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Pediatr Blood Cancer 2015;62:S514–S584

Psychosocial Follow-Up in Survivorship as a Standard of Care in Pediatric Oncology

E. Anne Lown, DrPH,1∗ Farya Phillips, PhD, CCLS,2 Lisa A. Schwartz, PhD,3 Abby R. Rosenberg, MD, MS,4,5

and Barbara Jones, PhD, MSW2

Childhood cancer survivors (CCS) have a high risk of medicallate effects following cancer therapy. Psychosocial late effects areless often recognized. Many CCS do not receive long-term follow-up(LTFU) care, and those who do are rarely screened for psychosociallate effects. An interdisciplinary team conducted a systematic reviewof qualitative and quantitative studies to assess social, educational,

vocational, psychological, and behavioral outcomes along with fac-tors related to receipt of LTFU care. We propose that psychosocialscreening be considered a standard of care in long-term follow-up care and that education be provided to promote the use LTFUcare starting early in the treatment trajectory. Pediatr Blood Cancer2015;62:S514–S584. C© 2015 Wiley Periodicals, Inc.

Key words: long-term follow-up care; survivorship; childhood cancer; psychosocial

INTRODUCTION

Rapid improvement in treatment for child and adolescentcancers has led to greatly increased survival with a growingpopulation of over 300,000 long-term childhood cancer sur-vivors (CCS) in the United States.[1] Sixty percent of CCSreport medical morbidities.[2–4] Long-term follow-up (LTFU)care is recommended and involves systematic assessment todetect and treat health problems related to childhood can-cer and its treatment.[5] However, late effects of childhoodcancer are not limited to physical health problems. Previousstudies describe CCS as having psychosocial difficulties im-pacting academic achievement, employment, social, and fam-ily relationships,[6–15] affective distress,[16–18] posttraumaticstress symptoms,[19–21] suicidality,[22] and tobacco and heavyalcohol use.[23,24] Few survivors receive dedicated LTFUcare,[25–29] and even fewer receive a comprehensive psychoso-cial assessment.[30]

The Children’s Oncology Group (COG) has outlined LTFUguidelines that provide recommendations for regular surveil-lance and care for those 2+ years from end of treatment basedon specific treatment exposures.[31,32] The COG LTFU guide-lines are updated periodically using systematic reviews of pub-lished scientific literature. While guidelines primarily pertainto physical late effects, recommendations also include screen-ing for psychological, social, and behavioral difficulties.[31] Thismanuscript builds on the COG recommendations and providesan additional, updated review of the recent literature focusingon the psychosocial sequelae from childhood cancer and the psy-chosocial factors influencing uptake of LTFU care. The goal ofthe review is to identify and summarize the evidence so thatscreening can target the most relevant psychosocial domains.Screening for distress among cancer survivors has been recom-mended starting at cancer diagnosis and at appropriate intervalsthereafter.[33–35] The provision of screening supports patients’wishes since psychological well-being has been described byCCSas more important than physical quality of life (QoL) dimen-sions.[36]

Psychosocial Standard of Care

• Long-term survivors of child and adolescent cancersshould receive yearly psychosocial screening for: (1a) adverseeducational and/or vocational progress, social and relation-ship difficulties; (1b) distress, anxiety, and depression; and(1c) risky health behaviors.

• (2) Adolescent and young adult survivors and theirparents should receive anticipatory guidance on the needfor life-long follow-up care by the time treatment ends, andrepeated at each follow-up visit.

METHODS

This review was performed as part of the collaborative Stan-dards for Psychosocial Care of Children with Cancer and TheirFamilies effort. For a full description of the methods used

Abbreviations: CCS, childhood cancer survivors; CNS, central ner-vous system; COG, Children’s Oncology Group; HRQoL, health-related quality of life; LTFU, long-term follow-up; PTSD, post-traumatic stress disorder; QoL, quality of life1Department of Social and Behavioral Sciences, School of Nursing,University of California, San Francisco, California; 2School of So-cial Work, The University of Texas at Austin, Austin, Texas; 3TheChildren’s Hospital of Philadelphia and The Perelman School ofMedicine at the University of Pennsylvania, Philadelphia, Pennsyl-vania; 4Cancer and BloodDisorders Center, Seattle Children’s Hos-pital, Seattle,Washington; 5Department of Pediatrics, University ofWashington School of Medicine, Seattle, Washington

Conflict of Interest: Nothing to declare.∗Correspondence to: E. Anne Lown, Department of Social and Be-havioral Sciences, School of Nursing, University of California, SanFrancisco, CA 94143-0612. E-mail: [email protected]

Received 30 June 2015; Accepted 10 September 2015

C© 2015 Wiley Periodicals, Inc.DOI 10.1002/pbc.25783Published online in Wiley Online Library(wileyonlinelibrary.com).

Psychosocial Follow-Up in Survivorship S515

to develop each standard, please refer to Wiener et al.[37]Search terms specific to this manuscript included “education,”“vocation,” “depression,” “anxiety,” “tobacco,” “alcohol,” or“long-term follow-up.” (The full list of search terms is avail-able in Supplemental Table I.) The search identified 813 arti-cles of which 93 met inclusion criteria and were reviewed. (SeeSupplemental Figure I, PRISMA.) These articles included sixsystematic reviews, three narrative reviews, one case-control,67 cross-sectional/cohort or retrospective chart reviews, 10qualitative and four mixed methods studies, one opinion piece,and one randomized trial. Studies were published January 2011to April 2015, supplementing the COG LTFU guidelines, Ver-sion 4.[31] Inclusion criteria were: CCS (i) diagnosed betweenages 0–18; (ii) completed treatment for initial cancer diagnosis;and (iii) psychosocial issues were key outcomemeasures. Studieswere excludedwhenCCSdatawere aggregatedwith adult cancersurvivors, main outcomes were focused on measurement valida-tion or interventions, except where unique data on psychosocialfactors was provided. Additional articles were identified throughreferences in the included articles, and by group consensus. Stan-dards were developed following a lengthy procedure as outlinedin Wiener et al.[37] adhering to suggested methods for guidelinedevelopment in the existing literature.[38,39] The goal of the pa-per was to document the type and extent of psychosocial issuesin CCS in order to develop recommendations that can be ap-plied across all cancer treatment centers and begin the processof addressing CCS psychosocial issues.

The study team includes epidemiologists (EAL and ARR),social workers (FP and BJ), a psychologist (LAS), an oncol-ogist (ARR), and a stakeholder (EAL). A nurse and a socialworker with CCS specialization externally reviewed drafts of themanuscript.

RESULTS

Table I summarizes findings from the literature review. Ingeneral, studies describe most CCS as well-adjusted; however,studies have described poorer psychosocial outcomes comparedwith the controls.

Social, Academic, and Vocational Difficulties

CCS may be at risk for social and relationship difficulties.For example, CCS who participated in the 2009 U.S. Behav-ioral Risk Factor Surveillance Study (BRFSS) were significantlymore likely to report poor social support compared with theirpeers.[40] Reports from the Italian, Swiss, and U.S. ChildhoodCancer Survivorship Studies (CCSS) described lower marriagerates among CCS compared with the population controls anddata from the U.S. cohort suggested CCS have poorer sexualhealth.[13–15,41]

Educational and vocational disadvantages are also reportedin CCS. Although some CCS report greater school satisfac-tion than controls,[42] CCS generally have lower educational at-tainment.[15,43–45] Likewise, they are less often in high skilledmanagerial or professional positions, less likely to work full-time, receive lower incomes than their gender-matched sib-lings,[46] and are more likely to be unemployed.[15,47] Sur-vivors of Wilms tumors are slightly less likely to go to collegeor obtain employment.[43] Brain tumor survivors are at riskfor poor vocational outcomes;[47] however, special education

programs can minimize these disparities.[15] Hence, early de-tection and referral for services has potential to improve pa-tient outcomes. Risk factors for social, academic, and vocationaldifficulties include diagnosis or treatment for central nervoussystem (CNS) tumors, premorbid learning or emotional difficul-ties, low income or education, hematopoietic cell transplant, andyounger age at diagnosis.[31]

Mental Health Concerns

Systematic and narrative reviews describe CCS as experi-encing lower psychological well-being, greater anxiety, moreproblem behaviors, and more PTSS.[48] Brain tumor survivorsreport greater depression, anxiety, suicidal ideation, and behav-ioral problems.[49] Studies of acute lymphoblastic leukemia sur-vivors report higher risk for adverse psychological outcomessuch as depression and somatic distress.[15]

Large, high-quality studies including the CCSS from theU.S. and Switzerland, the U.S. BRFSS, and the Danish Co-hort study provide evidence of greater mental health distress,[50]greater utilization of mental health care,[47,51] greater risk forneurodevelopmental, emotional, and behavioral disorders,[52]more psychoactive medication use,[53] suicidal ideation,[54] andhigher rate of posttraumatic stress in CCS compared with sib-ling controls.[55] In a study comparing CCS to healthy peers,CCS reported more days per month of poor mental health.[40]A longitudinal study noted worsening physical health predictedgreater depression, anxiety, and somatization.[56] Some largestudies report no differences in mental health outcomes be-tween CCS and siblings,[57,58] and no differences in anxiety anddepression scores between CCS and population controls.[59]Negative outcomes are generally associated with a diagnosisor treatment for CNS tumors, premorbid learning or emo-tional difficulties, perceived poor health, female gender, and lowsocioeconomic status.[31]

Risky Health Behaviors

Compared with a representative sample of matched peers,smoking is more common among adult CCS and use of smoke-less tobacco is more common among a sub-sample non-whitemen aged 35–49.[40,60] As a whole, CCS are less likely to en-gage in smokeless and dual tobacco use (smokeless and com-bustible).[60] Past month and binge drinking is not significantlydifferent between adult survivors and controls.[40] In adolescentCCS, tobacco and alcohol use is comparable to siblings thoughcurrent beer/wine consumption, binge drinking, and smokelesstobacco use in adolescent CCS.[61] Lower household incomeor education and older age at diagnosis increase risk for riskyhealth behaviors.[31]

Psychosocial Associates of Engagement in Long-TermFollow-Up Care

Our search methods did not identify evidence-based prac-tices to promote ongoing LTFU care for CCS or youthtransition to LTFU care in the adult system. Patient-providercommunication about health risks and follow-up care maybe important to sustain engagement in care and uptakeof recommended screening.[62] Cancer-related anxiety andperceived poor health status relates to the likelihood of

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S516 Lown et al.

TABLE I. Psychosocial Follow-Up in Survivorship-Summary of Literature

Standard Evidence summary Methodology Quality of evidenceStrength of

recommendation

1. Long-term survivors of child and adolescent cancers should receive yearly psychosocial screening for:(a) Adverse

educational and/orvocational progress,social andrelationshipdifficulties;

Subsets have impairedsocial relationships,lower educational andvocational attainment,and impaired QoL due topsychological distress,medical late effects, orfinancial hardship.Multiple studieshighlight identifiable andpossible modifiable riskfactors for poor QoL inCCS.

Cross-sectionalsurvey-based, descriptive,and qualitative studieswere most common;several large survivorshipcohort studies included.Few systematic reviewsof descriptive studies; noexperimental orquasi-experimentalstudies. Broad range ofselected variablesexamined QoL.

Moderate: consistentfindings from lowerlevel evidencestudies.

Strong: Recommendationapplies to most patientsin most circumstances,low risk and high benefitassociated with guidelinewith potential healthbenefit for CCS andfamily. Further researchneeded to increaseconfidence in theestimate of effect and toinform futureinterventions.

(b) Distress, anxiety,and depression;

Subsets of CCS are athigher risk for poormental health outcomes,especially survivors ofCNS tumors.

Systematic reviews,cross-sectionalsurvey-based, cohort,qualitative, and mixedmethods studies. Manylarge survivorship cohortstudies with controls areincluded of descriptivestudies.

High: consistentfindings frommultiple studieswith large cohorts.More longitudinalstudies are needed.

Strong: Recommendationapplies to all survivors,low risk and high benefitassociated with guidelineand potential healthbenefit for CCS. Futurelongitudinal researchcould better identifytrajectory of distress andcritical opportunities forintervention.

(c) Risky healthbehaviors.

Heavy alcohol use,smoking, smokelesstobacco and dualtobacco use are similaror lower in CCScompared with peers ornational norms. Some ofthe most medicallyvulnerable groups smokeand drink similarly topeers.

Five of the seven studieswere cross sectional,several with largesamples and controls.One case-control designand one systematicreview (COG) citingadditional studies withstrong methodology.

High-moderatequality of evidence.Studies identifiedsub-groups at risk.

Strong: Recommendationapplies to all survivors.Low risk associated withguideline, high potentialhealth benefit givenpossible synergistichealth risks for CCS.Brief screeners exist butfuture research needed totest them in CCSpopulation.

2. Adolescent andyoung adultsurvivors and theirparents shouldreceive anticipatoryguidance on theneed for life-longfollow-up care bythe time treatmentends, and repeatedat each follow-upvisit.

Psychosocial variablesimpact uptake offollow-up care andreadiness to transition toadult care. These includepatientknowledge/perception oflate effects, vulnerability,motivation to pursuefollow-up care, anddiseaseself-management/self-efficacy.

Cross-sectional cohort,qualitative (focus groupsand interviews), opinion

Low to moderate:evidence for criticaloutcomes, fromobservational andcross-sectionalstudies.

Strong: Recommendationapplies to most survivors.Future research shouldassess the impact oftransition readiness andreceipt of LTFU care onlong-term outcomes ofCCS.

CCS, childhood cancer survivors; PTSD, post-traumatic stress disorder; CNS, central nervous system; HRQoL, health related; COG,Children’s Oncology Group; LTFU, long-term follow-up.

having conversations about risk-based care and screening.[62]Hypothesized psychosocial factors that impact uptake offollow-up care and readiness to transition to adult care in-clude patient knowledge/perception of late-effects, feelingsof health vulnerability, motivation to pursue follow-up care,and disease self-management.[63–66] Cancer identity andemotional components such as fear, gratitude, and gaining per-

spective positively influenced likelihood of transition to adultcare.[67]

DISCUSSION

While results from the systematic review show that manyCCS are able to adjust and move beyond their cancer



experience, psychosocial difficulties are also widely described.Findings from the present systematic review are consistent withprevious studies. Our review supported prior reports that CCShave lower educational and vocational attainment comparedwith the controls.[2] Screening for needed educational supportduring and after cancer treatment may minimize this dispar-ity.[15] A pattern of greater psychosocial distress,[2,17,68,69](but not greater psychopathology [70]) in CCS compared withcontrols was also supported in this review.

Reports that PTSD is more common among CCS may bepartially explained bymethodological differences.[71–73] For in-stance, lower rates of PTSD are reported when authors employstricter criteria for diagnosis, or direct the focus on the canceras the sole traumatic event.[71,74] Full coverage of the PTSDdebate falls outside the scope of the present review. However,because considerable debate remains in the field about whetherthere is additional risk for PTSD among CCS, the authors havenot included such screening in the proposed standards. As moredefinitive studies clarify the traumatic impact of childhood can-cer, screening recommendations should be revisited. Previousstudies described tobacco or heavy alcohol use as comparableor slightly lower among adult and adolescent CCS comparedto peers or siblings.[23,24,75–77] Unfortunately, tobacco andheavy alcohol use is not lower in the most medically vulnerableCCS.

To combat underrecognition and undertreatment of psycho-logical problems in CCS, a first step involves systematic screen-ing to accurately identify those who most need support.[31,35,78–80] To be effective, screening must be paired with referralfor support, education, and treatment as appropriate. Evidence-based interventions to address psychosocial late effects havebeen described elsewhere.[81,82] CCS with risky health behav-iors rarely receive risk-based medical care.[83]

A recent systematic review described psychosocial screeningtools for CCS such as those to assess overall distress,[86] de-pression, anxiety, and suicidality.[84,87–90] Strong recommen-dations exist for the use of brief screening tools to identify sub-stance use in primary care settings for healthy adults and adoles-cents.[93,95] Use of these tools has been shown to be effective inreducing problematic drinking and tobacco use when combinedwith brief interventions in healthy populations.[76,96,98–100]It is recommended that substance use screening occur in theLTFU setting, in addition to primary care, given synergistichealth risks for CCS related to treatment exposures. Providersof LTFU care are likely more attuned to these specific healthrisks. Delivery of interventions that employ survivor focusedcounseling have been shown to be more effective in reducingsmoking among CCS though substance use treatment remainschallenging for survivors, as for other populations.[101,102]

With the development of more effective treatments the pop-ulation of CCS has grown and so too has the number ofsurvivors suffering from psychosocial sequelae. Psychosocialscreening in LTFU settings is effective in identifying distressand CCS report minimal burden and high acceptance.[103,104] In the absence of data on the most effective screeningschedule, practical considerations influence the recommenda-tion that screening should be administered according to exist-ing COG LTFU schedules for care (usually yearly based onexposures) and performed for all survivors, regardless of diag-nosis or exposure.[31] CCS who consistently screen negative for

substance use could receive reduced screening over time consis-tent with healthy population data showing declining initiationof substance use with age.[105] Larger studies are needed to de-scribe the implementation and adequacy of specific psychosocialscreening instruments in a variety of LTFU care setting [84] andthus future research should identify appropriate, sensitive, andacceptable brief instruments for CCS.

Some authors have questioned the utility of screening andsuggested that energies could be put to more productive usein treating distress.[106–110] Screening may improve patient-provider communication,[111,112] but there is not clear con-sistent evidence that it improves survivor well-being.[113–116]Questions remain on what should be screened, how screeningshould be implemented (on-line, in-person, nurse vs. doctor),whether to assess felt need or contextual need, and what to dowith the results.[117] The addition of information on the contextof the distress may reveal need for concrete support rather thanpsychosocial support. Certainly, screening is unlikely to be effec-tive unless is leads to a response, whether that is further clinicalassessment, treatment, or just an acknowledgement of the dis-tress. More research is needed to discern the best methods forscreening.[117]

Many survivors are not worried about their health,[118] un-derestimate their health risks,[63,64,119] know few details oftheir treatment history,[119] and few engage in detailed discus-sions about their cancer history with a provider or receive reg-ular cancer specific follow-up care [118] creating a barrier topsychosocial screening.[31,120] Less than 20% of adult CCSreported follow-up care that included advice about risk reduc-tion, or screening tests for physical late effects.[26,121] Patientand parent education that starts early in the treatment trajec-tory and emphasizes the importance of LTFU is needed. Fur-thermore, primary care providers and other adult health careproviders may need focused education about both the physi-cal and psychosocial sequelae of childhood cancer, and pub-lished guidelines must emphasize both realms of whole-patientcare.[122]

Certain barriers have been identified and include lack offinancial or personnel resources, lack of health insurance re-imbursement or psychosocial providers, or low motivation forscreening. These barriers may be addressed by use of brief stan-dardized instruments, development of hospital and communityreferrals, and provider education. Future research must focuson the selection, timing, and efficacy of such screening tools inCCS.[123]

A number of limitations exist in the manuscript. We choseto target specific negative psychosocial late effects most of-ten identified in the literature. We did not include studies as-sessing global or abstract constructs such as QoL, neurologi-cal, or cognitive late effects (addressed within this special issue[124]), or positive outcomes, though promoting such outcomesmay contribute to survivor well-being and QoL.[125,126] A fullreview of assessment instruments and effective interventionsfor each outcome was beyond the scope of the project and isreviewed elsewhere.[81,82] Finally, given the considerable pres-ence of psychological late effects in CCS, the authors recom-mend screening while recognizing that future research is neededto determine whether screening lessens this morbidity.

In summary, the burden of chronic health problems amongCCS is profound in both prevalence and severity.[127] Receipt


S518 Lown et al.

of LTFU care that addresses both physical and mental healthsequelae of childhood cancer is critical to supporting longevityand well-being.[128] In the face of late medical health effects,some of which are not reversible, health care providers can stillattend to the human cost of cancer by asking the patient abouthis or her experience and listening to the answer.[128]

ACKNOWLEDGMENT

Authors would like to thank stakeholder groups who con-ducted external reviews of this work.

Author Contributions

This work was conducted collaboratively as part of theStandards for Psychosocial Care of Children with Cancer andtheir Families Workgroup. E.A.L. and B.J. were responsiblefor the conception and design of the proposed standards inthis manuscript. F.P. was responsible for the initial literaturesearch and collection and assembly of data. E.A.L., F.P., L.A.S.,and A.R.R. conducted supplementary searches. E.A.L., F.P.,L.A.S., and A.R.R. wrote sections related to each standard andE.A.L., A.R.R., and B.J. did final editing including final ap-proval of data analysis, interpretation, and presentation of data,and completed critical revisions for important intellectual con-tent. All authors approved of the final version of thismanuscriptand take public responsibility for the content presented in thisarticle.

Financial Disclosure

The authors have no financial relationships relevant to thisarticle to disclose.

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SUPPLEMENTARY INFORMATION

SUPPLEMENTAL TABLE I. Psychosocial Follow-up in Survivorship–Methods and Search Terms

The search strategy for this manuscript used electronic databases including PubMed, PsychINFO, Google Scholar, and Academic SearchComplete.

Baseline search terms used: Childhood Cancer, Pediatric Cancer, Cancer Survivor, Survivorship, Oncology, Cancer, Intrathecalchemotherapy, Methotrexate, Radiotherapy, Cranial radiation, Antineoplastic, Neoplasms, Leukemia, CNS tumors, and Brain tumors.

Search terms specific to psychosocial issues for long-term survivors include: Depression/Global Distress included baseline terms and:depression, low mood, flat affect, sad, sadness, mood disorder, guilt, uncertainty, isolation, poor self-esteem, poor body image, suicidalideation, grief, bereavement, distress, global distress, mental health, emotional functioning, psychological outcomes, psychosocialoutcomes, psychosocial late effects, somatic complaints, somatization, and pain.Search terms used for the Anxiety category included baseline terms and: anxiety, stress, post traumatic stress symptoms, posttraumatic stress disorder, psychological distress, worry, fear, and phobia.



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Trecipients

interviewed

11–12years

postdx

.

�Ofallthe

survivors,674

(71.5%

)had

atleast1

late

effect,with

theris

kbeing5.0

times

high

erfor

tran

s-plan

tatio

nsurvivors.

�Com

paredwith

norm

s,the

survivor

grou

prepo

rted

asig

nifican

tlylower

mental

compo

sitescore.

�HSC

T,repo

rted

alower

level

ofQoL

forthe

dimensio

ns(physic

alfunctio

ning

,bod

ilypa

in,g

eneralhealth

perceptio

ns),with

significan

teff

ectsizes

upto

.48forthe

physicalcompo

sitescore.

Mod

erate-largesamplesiz

e,high

respon

serate

(85%

),compa

rison

sweremad

ebetw

eentreatm

entg

roup

san

dFr

ench

norm

swere

also

used

forc

ompa

rison

,Datacollection

approp

riate

tostud

ymetho

dallowstrong

conclusio

nsab

out

diffe

rencein

QoL

outcom

esbetw

een

treatm

entg

roup

s;ap

prop

riate

analysis;

evidence

deriv

edfrom

high

quality

coho

rtstud

y;repo

rtingcomprehensiv

e,clearly

describ

ed.U

seof

norm

edda

taprov

ides

additio

nalinformation

butsam

plediffe

rences

canlim

itconclusio

ns.**

4x

Berbis,2015

Coh

ortP

rofile:

The

French

Childho

odCan

cer

Survivor

Stud

yFo

rLeuka

emia

(LEA

Coh

ort)[5]

Prospective

coho

rtstud

yN

=1545

child

hood

leuk

emia

survivors

(AML24

mon

thsa

fter

dx.o

rALL

48mon

ths

afterd

x.)

�Lon

gaftertreatmentw

ascompleted,childho

odleuk

emia

survivorsr

eported

that

effectson

psycho

logical

well-b

eing

aremore

impo

rtan

ttha

nthey

areon

physicalQoL

dimensio

ns

Large

sample,follo

wed

CCS

for1

0+yearsd

ata

collectione/2years.da

tacollectionap

prop

riate

tostud

ymetho

d;ap

prop

riate

analysis;

evidence

deriv

edfrom

high

quality

coho

rtstud

y;repo

rtingcomprehensiv

e,clearly

describ

ed;issues

with

follo

w-upor

miss

ing

data

clearly

describ

ed**

4x

(Contin

ued)


S524 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Brie

r,2011

Profi

leso

fhealth

competence

beliefsam

ong

youn

gad

ult

survivorso

fchild

hood

cancer.[6

]

Cross

sectiona

lsecond

ary

analysisof

existingda

ta

N=

119yo

ung

adultC

CSof

leuk

emia,

(N=

51)

lymph

oma

(N=

24),an

dsolid

tumors

(N=

44.

Current

age

rang

e18–29

years.

�Three

distinct

profi

leso

rclusters

ofhealth

competencebeliefswere

describ

edam

ongyo

ung

adultC

CS:

Ada

ptive

(n=

54),Low

Auton

omy

(n=

25),an

dVulnerable

(n=

40).

�Ada

ptivesurvivorsh

adpo

sitivebeliefs,low

distress,

andminim

alhealth

prob

lems.

�Low

Auton

omysurvivors

weresim

ilartotheAda

ptive

clustere

xcepttheyha

dlow

autono

mybeliefs.

The

majority

repo

rted

livingwith

theirp

arents.

�Vulnerableclusterh

admore

negativ

ebeliefs,the

most

medicalprob

lems,an

dthe

high

estlevelso

fdistress.

�Health

competencebelief

profi

lesidentified

unique

subsetso

fYA

survivorso

fpediatric

cancer

that

have

potentially

distinct

risk

factors.

�Categorizingsurvivorsb

yhealth

beliefpa

tterns

may

help

healthcare

prov

iders

treata

ndeducatetheir

patie

ntstailoredto

individu

alsurvivors’needs

andris

ks.

Mod

eratesamplesiz

e;da

tacollectionlim

itedto

one

clinic;app

ropriate

analysis;

repo

rting

comprehensiv

e,clearly

describ

ed;

6x

x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Brin

kman

&Liptak,

2013,

Suicide

ideatio

nin

pediatric

and

adultsurvivo

rsof

child

hood

brain

tumors.[7]

Retrospectiv

echart

review

-coh

ort

N=

319ad

ult

survivorso

fchild

hood

braintumors

�Nearly

12%

ofsurvivors

(11.7%,n

=37)reported

suicidalideatio

n(SI)*.

�Fivesurvivorsh

addo

cu-

mentedsuicideattempts,

thou

ghno

newerefatal.

�Adjustin

gfors

exan

dage,

historyof

depressio

n,psycho

activ

emedication

treatm

ent,ob

servationor

surgeryon

lytreatm

ent,an

dseizures

weresig

nifican

tlyassociated

with

SIin

survivors.

�Su

rvivorso

fpediatric

brain

tumorsa

ppeartobe

atris

kfore

xperiencingSI

Large

samplesiz

e;da

tacollectionfrom

chart

review

,stig

marelatedto

SImight

resultin

under-repo

rtingof

SIto

health

care

prov

iders

biasingresults,

approp

riate

analysis;

6x

Brin

kman

,2013

Lon

gitudina

lpa

tterns

ofpsycho

logical

distress

inad

ult

survivorso

fchild

hood

cancer

[8]

Prospective

coho

rtstud

yof

adultC

CS

with

3waves

ofda

ta

N=

4569

adult

survivorso

fchild

hood

cancers

�Thiss

tudy

describ

edlong

itudina

lpatternso

fdistress

inad

ultC

CS.

�Mostsurvivo

rsrepo

rted

few

orno

symptom

sofdistress

over

time,althou

ghsubsets

ofsurvivorsr

eported

persistently

elevated

(depression:

8.9%

;anx

iety:

4.8%

;som

atization:

7.2%

)or

significan

tincreases

indistress

symptom

soverthe

follo

w-upperio

d(depression:

10.2%;a

nxiety:

11.8%;som

atization:

13.0%).

�Increasin

gdistress

symptom

swerepredictedby

survivor

perceptio

nof

worsening

physicalhealth

over

time(depression:

OR

=3.3;

95%

CI=

2.4–4.5;

anxiety:

OR

=3.0;

95%

CI=

2.2–4.0;

somatization:

OR

=5.3;

95%

CI=

3.9–7.4).

�Pe

rsistentd

istress

symptom

swerealso

predictedby

worsening

pain

andending

analgesic

use.

largesamplesiz

e;2

follo

w-ups

over

long

follo

w-upperio

d,da

tacollectionap

prop

riate

tostud

ymetho

d;strong

analysismetho

dology;

evidence

deriv

edfrom

high

quality

coho

rtstud

ies;

repo

rtingcomprehensiv

e,clearly

describ

ed;**

4x

(Contin

ued)


S526 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Brin

kman

,Li,

2013,

Restricted

access

tothe

environm

ent

andqu

ality

oflifein

adult

survivorso

fchild

hood

brain

tumors.[9]

Cross

sectiona

lsurvey

swith

matched

controls.

Stud

yused

En-

vironm

ental

Ana

lysis

ofMob

ility

Questionn

aire

N=

78long

-term

braintumor

survivorsa

ndN

=78

popu

latio

n-ba

sed

controls

matched

onage,sex,

and

zip-code.

Mean

age

=22

y

�Su

rvivorsa

voided

physical

activ

ityclim

bing

stairs,

walking

onun

even

surfaces,

travelingalon

e,an

dtraveling

innewplaces.

�Overall,

survivors,compa

red

tocontrolswere4.8tim

esmorelik

elyto

avoidactiv

ity.

�Low

activ

itylevelswere

associated

with

redu

ced

physicalfunctio

ning

,poo

rer

generalh

ealth

,poo

rers

ocial

functio

ning

,and

redu

ced

HRQoL

.

Mod

eratesamplewith

matchingsib

lingcontrols,

approp

riate

multiv

ariate

statisticaltechniqu

es,

impo

rtan

tfind

ings,s

tron

gstud

ydesig

n.**

4x

Brin

kman

,Zha

ng,2

013

Prevalence

and

predictors

ofprescriptio

npsycho

activ

emedicationuse

inad

ult

survivorso

fchild

hood

cancer.[1

0]

Coh

ortstudy

N=

10,378

child

hood

cancer

survivors

N=

3,206

siblin

gs

�Su

rvivorsw

eresig

nifican

tlymorelik

elyto

repo

rtba

selin

e(22vs.1

5%,

p<

0.001)

andnewon

set(31

vs.2

5%,p

<0.001)

psycho

activ

emedicationuse

compa

redto

siblin

gs,a

swell

asuseof

multip

lemedications

(p<

0.001).

�Fe

malesurvivorsw

ere

significan

tlymorelik

elyto

repo

rtba

selin

ean

dnew

onsetu

seof

antid

epressan

tsan

dmultip

lemedications

�Antidepressan

tswere

associated

with

impa

irment

across

alld

omains

ofHRQOL,w

iththeexception

ofph

ysicalfunctio

n.

largesamplesiz

e;sib

ling

controls,

data

collection

approp

riate;a

ppropriate

analysis;

evidence

deriv

edfrom

high

quality

coho

rt;

repo

rtingcomprehensiv

e.**

4x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Brin

kman

,Zha

ng,2

014

Suicide

Ideatio

nan

dAssociated

Mortalityin

Adu

ltSu

rvivorso

fChildho

odCan

cer.[11]

U.S.C

CSS

coho

rtstud

ytracking

suicideris

kov

er3waves

ofda

taspan

ning

upto

15years.

N=

9128

survivors

N=

3028

siblin

gs

�Su

rvivorsw

eresig

nifican

tlymorelik

elyto

repo

rtlate

(1+

yearsa

fter

baselin

ewith

noSI)(od

dsratio

OR

=1.9,)

andrecurrentsuicide

ideatio

n(SI)(O

R=

2.6)

compa

redto

siblin

gs.

�Po

orph

ysicalhealth

status

was

significan

tlyassociated

with

increasedris

kof

suicide

ideatio

nin

survivors(late

repo

rt:O

R=

1.9;

recurrent:

OR

=1.9).

�Su

icideideatio

nwas

associated

with

increased

riskfora

ll-causemortality

(hazardratio

=1.3)

and

deathby

externalcauses

(hazardratio

=2.4).

Large

samplesiz

e;sib

ling

controls,

multip

lewaves

ofda

ta,m

easure

used

for

SIda

tacollectionweak

buta

dequ

ateforthe

purposes

ofthestud

y;ap

prop

riate

analysis;

evidence

deriv

edfrom

high

quality

coho

rt;

strong

analysismetho

ds,

repo

rtingcomprehensiv

e,clearly

describ

ed.S

tron

gstud

ydesig

n.**

4x

Calam

inus,2

014,

Qua

lityof

life

inlong

-term

survivors

follo

wing

treatm

entfor

Hod

gkin’s

diseasedu

ring

child

hood

and

adolescencein

theGerman

multic

entre

stud

iesb

etween

1978

and

2002.[1

2]

Cross-sectio

nal

questio

n-na

iresu

sing

coho

rtda

tafrom

CCS

from

the

German

-Austrian

consecutive

multic

entre

trailsof

CCS.

N=

725

Hod

gkin’s

disease

survivors,

N=

659age

adjusted

German

reference

samplefrom

theEurop

ean

Organ

ization

forR

esearch

and

Treatm

ento

fCan

cer

(EORTC

)da

tacollected

inface-to-face

interviews.

�Su

rvivors’meanscores

were

morethan

10po

intslower

ontheQol

scales

“Emotiona

l”an

d“S

ocial

Fun

ctioning

”.�

Survivorsh

adhigh

ermean

scores,exceeding

10po

ints,

forthe

scales

“Fatigue”an

d“S

leep”.

�A

gend

ereff

ectsho

wed

lower

functio

ning

andhigh

ersymptom

levelsin

wom

en,

mostp

rominently

inthe

grou

pof

youn

gwom

en(21–25

years).

Mod

eratesamplesiz

ean

drelativ

elylargeford

isease

specificsample;strong

rand

omly

selected,

age-ad

justed

popu

latio

ncompa

rison

,data

collectionap

prop

riate

tostud

ymetho

d;ap

prop

riate

analysis;

repo

rtingcomprehensiv

e,clearly

describ

ed;**

4x

(Contin

ued)


S528 Lown et al.SU

PPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Cha

n,2014

Health

-related

quality

-of-life

and

psycho

logical

distress

ofyo

ungad

ult

survivorso

fchild

hood

cancer

inHon

gKon

g.[13]

Cross-sectio

nal

teleph

one

survey

N=

614yo

ung

adultC

CS

andN

=208

nearestinage

siblin

gs

�HRQoL

andpsycho

logical

distress

was

describ

edam

ongyo

ungad

ultC

CSin

Hon

gKon

g.�

CCSrepo

rted

significan

tlylower

meanscores

inph

ysicalrolean

dfunctio

ning

;mental,social,

andpsycho

logicalw

ell-b

eing

was

simila

rtothat

oftheir

siblin

gcontrols.

�Being

female,oldera

ge,

long

ersurvivaltim

e,an

dspecificcancer

diagno

ses

werethefactorsa

ssociated

with

poorer

physicalan

dmentala

daptation.

�HRQOLwas

negativ

ely

correlated

with

psycho

logicald

istress

Mod

erate-Large

samplesiz

ewith

siblin

gcontrols;

teleph

onead

ministratio

nof

somesurveys(eg.,

SF-36)

hasn

otbeen

valid

ated;a

ppropriate

analysis;

Reportin

gcomprehensiv

e,clearly

describ

ed.

4x

x

Cherven,2

014

Kno

wledg

ean

dris

kperceptio

nof

late

effects

amon

gchild

hood

cancer

survivorsa

ndpa

rentsb

efore

andafter

visitinga

child

hood

cancer

survivor

clinic.[1

4]

Lon

gitudina

lcoho

rtstud

yassessing

know

ledg

ean

dperceptio

nsof

riskforlate

effectsbefore

andaftera

survivor

clinic

visit

N=

65yo

ung

adult

survivors

�16

yearsa

tba

selin

ean

dn

=50

who

completed

baselin

ean

dfollo

w-up

�CCSrepo

rted

lowperceived

likelihoo

dof

developing

alate

effecto

fcancer

therap

yan

dha

dman

yincorrect

perceptio

nsof

riskfor

individu

allate

effects.

�Low

know

ledg

ebefore

clinic

(odd

sratio

=9.6;

95%

confi

denceinterval,1

.7–92.8;

P=

.02)

andlowperceived

likelihoo

dof

developing

alate

effect(od

dsratio

=18.7;

95%

confi

denceinterval,

2.7–242.3;

P=

.01)

was

foun

dto

predictlow

know

ledg

eof

late

effectrisk

atfollo

w-up.

�Thiss

uggeststha

tperceived

likelihoo

dof

developing

alate

effectisa

nim

portan

tfactor

intheindividu

als’

ability

tolearnab

outtheir

riskan

dshou

ldbe

addressed

before

initiationof

education.

Smallstudy,d

atacollection

approp

riate

tostud

ymetho

d;ap

prop

riate

pre

andpo

stclinicvisit

analysis;

repo

rtingclearly

describ

ed;issuesw

ithfollo

w-upor

miss

ingda

taclearly

describ

ed.

4x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Chu

ng,2

012

Predisp

osing

Factorstothe

Qua

lityof

Life

ofChildho

odCan

cer

Survivors.[15]

Cross

sectiona

lstud

yof

CCS

receiving

medical

follo

w-upin

outpatient

clinic,single

site.

N=

153CCS

(ages9

–16)

�Morethan

halfof

the

participan

tspresentedwith

depressiv

esymptom

sas

measuredby

theCES-DC

�The

meandepressiv

esymptom

scores

for

child

hood

cancer

survivors

(16.75)w

erefoun

dto

berelativ

elyhigh

erthan

those

forc

hildrenwith

outc

ancer

(13.16)

�The

meanself-esteem

scores

forthe

survivors(25.69)

was

lower

than

fors

imila

raged

scho

olchild

ren(27.89)

�Depressivesymptom

sare

astrong

predictoro

fqu

ality

oflifein

child

hood

cancer

survivorsa

ndthat

system

atic

screeningof

thispo

pulatio

nisim

portan

t.

mod

eratesamplesiz

e;no

controls,

CCSselectionat

follo

w-upvisit

couldbias

self-reportifthose

follo

wingup

weresic

ker

orha

dmorecomplex

medicaliss

ues.da

tacollectionap

prop

riate

tostud

ymetho

d;ap

prop

riate

analysis;

repo

rtingcomprehensiv

e,clearly

describ

ed;

4x

Cizek

Sajko,

2012,S

uicide

amon

gchild

hood

cancer

survivorsin

Slov

enia

[16]

Retrospectiv

ecoho

rtstud

ywith

participan

tschosen

from

thegeneral

popu

latio

nof

Slov

enia,

matched

bysex,

year

and

ageto

CCS

from

Can

cer

Registry

N=

1647

child

hood

cancer

survivors

�The

compa

rison

ofthe

observed

(3CCS)

and

expected

prob

ability

(3.16)

show

edthat

therewas

nostatistically

significan

tdiffe

rencein

thesuiciderate

betw

eenchild

hood

cancer

survivorsa

ndthegeneral

popu

latio

nof

Slov

enia.

Large

samplesiz

ewith

matched

popu

latio

ncontrols;

data

collectionap

prop

riate

tostud

ymetho

d;ap

prop

riate

analysis;

repo

rtingcomprehensiv

e,clearly

describ

ed.**

4x

(Contin

ued)


S530 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

COG,2

013

Children’s

Oncolog

yGroup

.Lon

g-Te

rmFo

llow-U

pGuidelin

esfor

Survivorso

fChildho

od,

Ado

lescenta

ndYo

ungAdu

ltCan

cers,(2013)

Version4.0.

Mon

rovia,

CA:

Children’s

Oncolog

yGroup

;Octob

er2013.[1

7]

System

atic

review

.37

stud

ies

publish

edbetw

een2003

and2011

with

apsycho

social

focusw

ere

includ

ed.

�These

risk-ba

sed,

expo

sure-related

clinical

practic

egu

idelines

prov

ide

recommenda

tions

for

screeningan

dman

agem

ent

oflate

effects(in

clud

ing

psycho

sociallate

effects)in

survivorso

fpediatric

maligna

ncies.Sp

ecific

guidelines

areba

sedon

specifictherap

eutic

expo

sures.

�The

guidelines

areintend

edforu

seam

onglong

-term

CCSwho

are

<=2

years

from

theendof

treatm

ent.

�Psycho

socialgu

idelines

describ

ead

verse

psycho

social/qua

lityof

life

effects,m

entalh

ealth

disorders,ris

kybehaviors,

psycho

socialdisabilitydu

eto

pain,fatigue

andba

rriers

tohealth

care

andinsurance

access.T

hegu

idelines

recommendyearly

psycho

socialassessmentfor

each

domain.

The

stud

yrig

orishigh

.Cho

iceof

papers,

inclusionan

dexclusion

crite

riawas

carefully

documented,

review

swerestan

dardized

using

Nationa

lCom

prehensiv

eCan

cerN

etwork

Categorieso

fconsensus

system

toassess

quality

ofevidence.**

5x

xx

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Cox

,2014Non

-cancer-related

mortalityris

ksin

adult

survivorso

fpediatric

maligna

ncies:

thechild

hood

cancer

survivor

stud

y.[18]

Casecontrol

desig

nN

=445SC

Cs

who

died

from

non-cancer

causes

were

compa

redto

N=

7,162

surviving

participan

ts(m

atched

byprim

arydx

,age,tim

esin

cediagno

sisan

dtim

eat

risk.)

�Adjustin

gfore

ducatio

n,income,chem

otherapy

/radiationexpo

sures,an

dnu

mber/severityof

chronic

health

cond

ition

s,an

increasedris

kfora

ll-cause

mortalitywas

associated

with

exercisin

gfewer

than

3da

ys/week,

being

underw

eigh

t,increased

medicalcare

utilizatio

n(P

<0.001),a

ndself-reportedfairto

poor

health

(P<

0.001).

�Ph

ysicalactiv

itywas

associated

with

ahigh

erris

kof

deatham

ongmales

repo

rtingno

exercise

compa

redto

thosewho

exercised

�3tim

esperw

eek.

�Everc

onsumingalcoho

lwas

associated

with

aredu

ced

riskof

all-c

ause

andother

non-externalcauses

ofdeath.

�Con

cerns/worrie

sabo

utfuture

health

wereassociated

with

increasedall-c

ause

mortality.

Mod

erate-largesamplesiz

e;ap

prop

riate

compa

rison

grou

pforq

uestionasked,

strong

analysis;

evidence

deriv

edfrom

high

quality

coho

rtstud

ies;

repo

rtingcomprehensiv

e,clearly

describ

ed;

issuesw

ithfollo

w-upor

miss

ingda

taclearly

describ

ed.**

4x

(Contin

ued)


S532 Lown et al.SU

PPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

D’A

gostino,

2013

Psycho

social

Cha

lleng

esan

dResou

rce

Needs

ofYo

ungAdu

ltCan

cer

Survivors:

Implications

forP

rogram

Develop

-ment.[19]

Qua

litative

N=

22yo

ung

adult

survivors.The

4focus

grou

pswere:

Brain

tumor

dx<18dx

;dxw/

Brain

>18;

Non

brain

cancer

dx<age18;

Non

brain

Tumor

cancer

dx>age18.

�Thiss

tudy

describ

edpsycho

socialchalleng

esan

dresource

needsa

mon

gAY

ACCS.

�Com

mon

challeng

esacross

thegrou

psinclud

edph

ysical

appearan

ce,fertility

,late

effects,socialrelationships,

andchan

ging

priorities.

�Childho

odcancer

survivors

struggledwith

identity

form

ation,

socialiso

latio

n,an

dhealth

care

tran

sitions.

�Childho

odbraintumor

survivorss

trug

gled

with

cogn

itive

deficits,lim

ited

career

optio

ns,a

ndpo

orsocialskills.

�Allgrou

psdescrib

edsim

ilar

resource

needsincluding

peer

supp

ort,age-specific

inform

ation,

andhaving

health

care

prov

iders

proa

ctivelyraise

salient

issues.

research

questio

nclearly

stated;

qualita

tiveap

proa

chclearly

justified;

stud

ycontextc

learly

describ

ed;sam

pling

strategy

approp

riate

for

research

questio

n;metho

dof

data

analysis

clearly

describ

ed;a

nalysis

approp

riate

forr

esearch

questio

n

6x

Dou

kkali,2013

Ado

lescents’

andYo

ung

Adu

lts’

Exp

eriences

ofChildho

odCan

cer.[20]

Qua

litative

teleph

one

interviews

N=

59child

hood

cancer

survivors

�Three

grou

psof

inform

ants

wereidentifi

edaccordingto

theird

escriptio

nsof

the

influ

ence

ofcancer

treatm

ento

ntheird

aily

life:

‘‘feelin

glik

ean

yone

else’’

(inform

antswho

describ

edthat

thecancer

experie

nce

hadalmostn

oinflu

ence

oncurrentlife

)(49%),‘‘feelin

galmostlikeothers’’(tho

sewho

describ

edsome

influ

ence)(44%),an

d‘‘feelin

gdiffe

rent’’(tho

sedescrib

ingagreatinfl

uence

oncurrentlife

)(7%

).

research

questio

nclearly

stated;

qualita

tiveap

proa

chclearly

justified;

stud

ycontextc

learly

describ

ed;sam

pling

strategy

approp

riate

for

research

questio

n;metho

dof

data

analysis

clearly

describ

ed;

6x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Ford,2

013

Attenda

nceat

asurvivorship

clinic:impa

cton

know

ledg

ean

dpsycho

social

adjustment.[21]

Cross

sectiona

lqu

estio

nnaire

exam

ining

characteris

tics

ofCCSwho

attend

edvs.

didno

tattend

aLT

FU

clinic

forC

CS.

N=

102

survivorsw

hoha

dreceived

care

ata

LTFU

clinic

andN

=71

survivors

nevers

eenin

aLT

FU

clinic

�Mostc

ommon

reason

stha

tno

n-LT

FU

survivorsd

idno

tattend

theclinicwere“n

otaw

are”

(71%)o

r“no

tinterested”(16%).

�Su

rvivorsineach

grou

pwere

ableto

accurately

repo

rttheirc

ancerd

iagn

osis,

but

fewkn

ewspecifictreatm

ent

inform

ation.

�Bothgrou

psun

derestim

ated

theirh

ealth

risks.

�A

significan

tminority

ineach

grou

prepo

rted

psycho

logicalo

remotiona

lprob

lems(16–18%),

post-traum

aticstress

disorder

(4.2–6.9

%),an

d/or

psycho

logicald

istress

(7.8–19.7%)b

uttherewere

nodiffe

rences

byreceipto

fLT

FU

care.

�Risk

yhealth

behaviors

(alcoh

oluse,sunscreen&

physicalactiv

ity)b

etween

thosewho

have

attend

eda

LTFU

clinican

dthosewho

didno

twereno

tstatistic

ally

diffe

rent.

mod

eratesamplesiz

e;da

tacollectionap

prop

riate

tostud

ymetho

d;ap

prop

riate

analysis;

repo

rtingcomprehensiv

e,clearly

describ

ed;

4x

xx

Ford,2

014

Psycho

sexu

alFun

ctioning

Amon

gAdu

ltFe

male

Survivorso

fChildho

odCan

cer:A

ReportF

rom

theCCSS

.[22]

Cross

sectiona

lSu

rvey-based

N=

2178

female

adultC

CS,

N=

408female

siblin

gs

�Su

rvivorsr

eported

significan

tlylower

sexu

al,

lower

sexu

alinterest,low

ersexu

aldesir

e,lower

sexu

alarou

sal,lower

sexu

alsatisfaction,

andlower

sexu

alactiv

ity,com

pared

with

siblin

gs.

�Risk

factorsfor

poorer

psycho

sexu

alfunctio

ning

amon

gsurvivorsincluded

oldera

geat

assessment,

ovarianfailu

reat

ayo

unger

age,treatm

entw

ithcran

ial

radiation,

andcancer

diagno

sisdu

ring

adolescence.

Large

samplesiz

ewith

siblin

gcontrols;

data

collectionap

prop

riate

tostud

ymetho

d;measurementb

ias;

approp

riate

analysis;

evidence

deriv

edfrom

high

quality

coho

rtstud

ies;

repo

rtingcomprehensiv

e,clearly

describ

ed**

4x

(Contin

ued)


S534 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Foster,2

014Pe

eran

droman

ticrelatio

nships

amon

gad

olescent

and

youn

gad

ult

survivorso

fchild

hood

hematolog

ical

cancer:a

review

ofchalleng

esan

dpo

sitive

outcom

es.[2

3]

Narrativ

eReview

Stud

ieso

fAdo

lescent

andYo

ung

Adu

lt(AYA

)CCS

�Bothintensity

andlong

treatm

entm

ayresultin

atyp

icalsocialization

�AY

Asurvivorsa

lsorepo

rtbenefitso

ftheirc

ancer

experie

nces

such

asincreasedmaturity

,anab

ility

tocope

with

lifestressors,

andperceptio

nsthat

they

canan

dwill

have

theab

ility

tobe

good

roman

ticpa

rtners

andpa

rents

�Fa

ctorsa

ssociatedwith

the

developm

ento

fpeer

and

roman

ticrelatio

nships

amon

gAY

Asurvivorso

fchild

hood

hematolog

ical

cancersinclude:

�perceivedhealth

vulnerab

ilitie

s�bo

dyim

agefollo

wing

treatm

ent

�ho

wattachmenttopa

rents

relatestolaters

ocial

outcom

es�

theim

pact

offertility

concerns

onlater

relatio

nships

andidentity

developm

ent

Did

notd

escribe

metho

dology

fors

tudies

includ

ed,d

idno

tinclude

atableof

stud

ies,didno

tap

prop

riately

assess

for

quality

ofstud

ies.

Reasona

bleto

combine

results

inthisway;

Impo

rtan

toutcomes

considered.

5x

(Contin

ued)


Psychosocial Follow-Up in Survivorship S535SU

PPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

French,2

013

Scho

olAttenda

ncein

Childho

odCan

cer

Survivorsa

ndTheir

Siblings.[2

4]

Cross

sectiona

lsurvey-based

plus

review

ofscho

olrecords

N=

131

survivors

N=

77sib

lings

�Scho

olattend

ance

amon

gCCSan

dtheirs

iblin

gswas

describ

ed.

�Su

rvivorsa

ndsib

lings

miss

edsig

nifican

tlymore

scho

olda

ysthan

the

popu

latio

ncontrolg

roup

(p<

.0001).

�Amon

gmatched

survivor

siblin

gpa

irs(N

=77),there

was

nodiffe

rencein

absenteeism

�Absenteeism

insurvivors

was

significan

tlyassociated

with

alowPe

diatric

Qua

lity

ofLife

InventoryPh

ysical

Health

SummaryScore

(P=

.01).

�The

only

predictoro

fab

senteeism

insurvivorsis

poor

physicalqu

ality

ofhealth.

Relativelysm

allsam

plesiz

ewith

siblin

gcontrols;

data

collectionap

prop

riate

tostud

ymetho

d;ap

prop

riate

analysis;

repo

rtingcomprehensiv

e,clearly

describ

ed;

measurementissues;

issuesw

ithfollo

w-upor

miss

ingda

taclearly

describ

ed

4x

Freycon,

2014

Academic

difficulties

and

occupa

tiona

lou

tcom

esof

adultsurvivo

rsof

child

hood

leuk

emia

who

have

undergon

eallogeneic

hematop

oietic

stem

cell

tran

splantation

and

fractio

nated

totalb

ody

irrad

iatio

ncon-

ditio

ning

.[25]

Cross-sectio

nal

registry-based

Adu

ltsurvivors

ofchild

hood

leuk

emia

N=

59(H

SCT)

with

Allo

genic

Hem

atop

oi-

eticStem

Cell

Tran

splant

&TBI

N=

19(fTBI)

additio

nal

chem

oCom

paredto

General

French

Popu

latio

n

�Average

acad

emicdelayof

.98yearsa

mon

gHSC

T,sig

nifican

tlyhigh

erthan

delayof

.34yearsingeneral

popu

latio

n�

Delay

was

depend

anto

nage

atdiagno

sisbu

tnot

FTBI

�Delay

increasedto

1.32

years

byfin

alyear

ofsecond

ary

scho

olcompa

redto

.51

yearsingeneralp

opulation

(p=

.0002)

�Num

bero

fstud

entswho

received

theird

iploma

significan

tlydecreasedfor

boys

HSC

Tcompa

redto

the

generalp

opulation

smallsam

plesiz

ewith

popu

latio

ncontrols;

data

collectionmetho

dno

texplicitlystated:

approp

riate

tostud

ymetho

d;ap

prop

riate

analysis;

evidence

deriv

edfrom

high

quality

coho

rtstud

ies;repo

rting

comprehensiv

e,clearly

describ

ed.

4x

(Contin

ued)


S536 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Gianina

zzi,2014

Mental

health-care

utilizatio

nin

survivorso

fchild

hood

cancer

and

siblin

gs:the

Swiss

child

hood

cancer

survivor

stud

y.[26]

Cross

sectiona

lcoho

rtqu

estio

nnaire

N=

1602

survivors

N=

703sib

lings

�Overall,

160(10%)a

nd53

(8%),utilizedmental

health-carean

d203(14%)

and127(14%)w

ere

considered

distressed.

�69

(34%)survivo

rsan

d20

(24%)siblin

gsha

dutilized

mentalh

ealth

-care.

�Pa

rticipan

tswith

high

erdistress

weremorelik

elyto

utilize

mentalh

ealth

-care.

�Distressed

survivorsn

otutilizing

mentalh

ealth

-care

weremorelik

elyto

seea

medicalspecialisttha

nno

n-distressed.

�factorsa

ssociatedwith

utilizing

mentalh

ealth

-care

werehigh

erpsycho

logical

distress

andrepo

rtinglate

effects.

largesamplesiz

ewith

siblin

gcontrols;

approp

riate

analysis;

evidence

deriv

edfrom

high

quality

coho

rtstud

ies;

repo

rtingcomprehensiv

e,clearly

describ

ed;**

4x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Gordijn,2

013,

Sleep,

fatig

ue,

depressio

n,an

dqu

ality

oflife

insurvivorso

fchild

hood

acute

lymph

oblastic

leuk

emia.[2

7]

Cross-sectio

nal

survey-based

N=

62,

survivorso

fchild

hood

acute

lymph

oblastic

leuk

emia

from

the

Dutch

Childho

odOncolog

yGroup

(current

mean

age9.7years

(±3.2);

mediantim

esin

cetreatm

ent3

6mon

ths(IQ

R22–62),a

ndon

eof

their

parents(35

dyad

s,26

parent-only

surveys)

�Pa

rentsr

eportedsurvivors

tohave

moredisturbedsle

ep(ES0.67),morefatig

ue(ES

0.55),an

dpo

orer

emotiona

l/behavioralq

uality

oflifethan

norm

s(p

=0.006)

�Su

rvivorsr

eportedfewer

sleep

prob

lems(ES0.57

for

child

ren

<13

years-old,

ES

0.29

fora

dolescents),less

depressio

n(p

<0.001for

girls,p

=0.016forb

oys),

andbetter

psycho

social

quality

oflifethan

norm

s(p

=0.001)

�Highers

leep

disturba

nces

andgreaterfatigue

correlated

with

more

depressiv

esymptom

sand

worse

psycho

socialan

dph

ysicalqu

ality

oflife

(p<

0.01

fora

ll)

Smallsam

plesiz

e,no

controls,

data

collection

andan

alyses

approp

riate,

repo

rtingcomprehensiv

e

6x

x

How

ard,

2014

Trajectorie

sof

socialiso

latio

nin

adult

survivorso

fchild

hood

cancer.[2

8]

Qua

litative

N=

30survivors

�Exp

eriences

ofsocial

isolatio

nevolvedov

ertim

eas

survivorsm

oved

towards

youn

gad

ulthoo

d.�

11CCSnevere

xperienced

socialiso

latio

naftertheir

cancer

treatm

ent,no

rtothe

presentd

ay.

�So

cialiso

latio

nam

ong19

survivorsfollowed

oneof

threetrajectorie

s;(1)

diminish

ingsocialiso

latio

n:itgo

tsom

ewha

tbetter,(2)

persistentsocialisolatio

n:it

neverg

otbetter

or(3)

delayedsocialiso

latio

n:ithit

melatero

n�

Assessin

gan

dad

dressin

gsocialou

tcom

es,including

isolatio

n,might

prom

ote

comprehensiv

elong

-term

follo

w-upcare

forc

hildho

odcancer

survivors

research

questio

nclearly

stated;q

ualitative

approa

chclearly

justified;

stud

ycontextc

learly

describ

ed;roleof

the

researcher

clearly

describ

ed;

samplingstrategy

approp

riate

forr

esearch

questio

nalthou

ghlack

ofinform

ationon

race/ethnicity

isa

weakn

ess;an

alysis

approp

riate

forr

esearch

questio

n.So

cialiso

latio

ncanbe

strong

lyinflu

enced

bycultu

ralcon

text.T

heau

thorsd

idno

treport

inform

ationon

race/ethnicity

sogeneralizab

ility

isun

clear.

6x

(Contin

ued)


S538 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Hua

ng,2

013,

Associatio

nBetweenthe

Prevalence

ofSy

mptom

sand

Health

-Related

Qua

lityof

Life

inAdu

ltSu

rvivorso

fChildho

odCan

cer:A

ReportF

rom

theSt

Jude

Life

time

Coh

ort

Stud

y.[29]

Cross

sectiona

lsurvey-based

N=

1667

long

term

survivors

�Pa

ininvo

lvingsites

other

than

head

,neckan

dba

ck,

anddisfigu

rement

representedthemost

frequent

symptom

classes,

endo

rsed

by58.7%

and

56.3%

ofsurvivors,

respectiv

ely.

�App

roximately87%

ofsurvivorsr

eportedmultip

lesymptom

classes.

�Greater

symptom

prevalence

was

associated

with

poorer

HRQOL.

�In

multiv

ariablean

alysis,

symptom

classese

xplained

upto

60%

ofthevaria

ncein

PCS(physic

alcompo

nent)

and56%

ofthevaria

ncein

MCS(mentalcom

ponent)

�Lon

gertim

esin

cediagno

siswas

associated

with

high

ercumulativeprevalence

inall

symptom

classes.

�Pa

rticipan

tswith

high

ereducationlevelsha

dbetter

PCSan

dMCSthan

those

with

lower

education

Large

samplesiz

e;no

compa

rison

grou

pap

prop

riate

analysis;

evidence

deriv

edfrom

high

quality

coho

rtstud

ies;

repo

rtingcomprehensiv

e,clearly

describ

ed;

issuesw

ithfollo

w-upor

miss

ingda

taclearly

describ

ed,m

etho

dology

approp

riate

fora

ssessin

gpredictors

ofHRQoL

justam

ongCCS.

6x

(Contin

ued)



PPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Jervaeus,L

ampic,

2014,C

linical

significan

cein

self-rated

HRQoL

amon

gsurvivorsa

fter

child

hood

cancer

–demon

strated

by anchor-based

thresholds

[30]

Mixed

quan

titative

and

qualita

tive

metho

dswith

crosss

ectio

nal

survey

N=

63CCS,

(aged12–22)

andN

=257

compa

rison

grou

p(aged

11–23)

rand

omly

selected

from

Swedish

popu

latio

nregister.

�Effe

ctsiz

esbetw

eenthe

subg

roup

s“Fe

elinglik

ean

yone

else

”an

d“Fe

eling

almostlikeothers

”an

dthe

grou

p“Fe

elingdiffe

rent

”werelargefora

lldimensio

ns(1.04–2.07).

�The

multip

leregressio

nmod

elss

howed

that

beinga

survivor

was

significan

tlyassociated

with

Scho

olEnv

ironm

ent,where

survivorss

coredhigh

erHRQoL

.�

femalean

doldera

ge(17–23

years)sig

nifican

tlycontrib

uted

tolower

self-rated

HRQoL

.�

Conclusion.

Inclinical

practic

ethe

KID

SCREEN-27couldbe

auseful

screeningtool

toidentifysurvivorso

fchild

hood

cancer

inneed

ofextrasupp

ort,using

KID

SCREEN

dimensio

nmeanvalues

of45

orless

asthresholds

Smallsam

plesiz

e,sample

deriv

edfrom

larger

coho

rtstud

y;age-matched

popu

latio

ncontrolsused;d

ata

collectionap

prop

riate

tostud

ymetho

d;ap

prop

riate

analysis;

repo

rtingcomprehensiv

e,clearly

describ

ed;low

respon

seratesa

ndpo

ssibleselectionbias

4x

x

Jervaeus,

Sand

eberg,

2014,S

urvivo

rsof

child

hood

cancer

repo

rthigh

levelsof

independ

ence

fiveyearsa

fter

diagno

sis[31]

Cross

sectiona

lsurvey

based.

N=

63CCS,

(aged12–22)

andN

=257

compa

rison

grou

p(aged

11–23)

rand

omly

selected

from

Swedish

popu

latio

nregister.

(Sam

epo

pulatin

asreference[30])

�Su

rvivorsr

ated

their

independ

ence

significan

tlyhigh

er5yearsa

fter

diagno

sisthan

durin

ginitial

cancer

treatm

enta

ndhigh

erthan

thecompa

rison

grou

p.�

Neither

demog

raph

icno

rclinicalvaria

bles

(age,sex,

diagno

sis,initia

lcan

cer

treatm

ent)predicted

self-rated

independ

ence

5yearsp

ostd

iagn

osis.

�Fiveyearsa

fter

diagno

sis,

survivorso

fchild

hood

cancer

appear

tohave

reachedasatisfactorylevel

ofindepend

ence.

smallsam

plesiz

e;deriv

edfrom

larger

coho

rtstud

y;age-matched

popu

latio

ncontrolsused;d

ata

collectionap

prop

riate

tostud

ymetho

d;ap

prop

riate

analysis;

repo

rtingcomprehensiv

e,clearly

describ

ed;low

respon

seratesa

ndpo

ssibleselectionbias.

4x

(Contin

ued)


S540 Lown et al.SU

PPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Joha

nnsdottir,

2011,

Emotiona

lFun

ctioning

andScho

olCon

tentment

inAdo

lescent

Survivorso

fAcute

Myeloid

Leukemia,

Infratentoria

lAstrocytoma,

andWilm

sTu

mor

[32]

Cross-sectio

nal

survey-based

with

controls

from

aNorwegian

health

survey

N=

151Nordic

patie

nts

treatedfor

acutemyeloid

leuk

emia,

infratenorial

astrocytom

a,an

dWilm

stumor

inchild

hood

from

1985–2001,

aged

13–18.

Age

equivalent

grou

pcontrol

N=

7910

�Emotiona

lfun

ctioning

and

scho

olcontentm

entw

asdescrib

edby

adolescent

survivorso

fchild

hood

cancer;

�Reportedbetter

subjectiv

ewell-b

eing

(p=

0.004)

and

self-esteem

(p<

0.001)

�Had

fewer

prob

lemsin

scho

ol(p

=0.004)

�Scho

olcontentm

entw

ashigh

erthan

controls

�Su

bjectiv

ewell-b

eing

and

scho

olcontentm

entw

ere

positivelyinflu

encedby

self-esteem

�Reportedhigh

levelsof

psycho

logicald

istress

(p=

0.002),m

ostly

attributableto

general

worrying

�Medicalfollo

w-updu

ring

thisperio

dshou

ldinclud

escreeningforp

sychosocial

difficulties

inwell-b

eing

,scho

olperforman

ce,a

ndem

otiona

ldistress

toprov

ide

supp

orta

snecessary

Mod

eratesamplesiz

efor

CCS,

65%

respon

serate,

data

collection

approp

riate

tostud

ymetho

ds,a

ppropriate

analysis,

evidence

deriv

edfrom

high

quality

coho

rt.

Reportin

gcomprehensiv

e,clearly

describ

ed.

4x

x

Joha

nnsdottir,

2012,Increased

prevalence

ofchronicfatig

ueam

ong

survivorso

fchild

hood

cancers:a

popu

latio

n-ba

sed

stud

y.[33]

Cross-sectio

nal

survey

NordicSo

ciety

ofPe

diatric

Hem

atolog

yan

dOncolog

yregistry

n=

398Nordic

CCS(>

1year-old

atdiagno

sis,

currently

>13

years-old)

�Current

oldera

ge(>

18years)associated

with

high

erfatig

uecompa

redto

patie

nts

ages

13–18years(14%

vs.6

%with

chronicfatig

ue,

respectiv

ely,p

<0.05)

�Pa

tients>

18yearsw

ithchronicfatig

uerepo

rted

poorer

physicalhealth

(p<

0.05)b

utbetter

mental

health

(=0.001)

than

popu

latio

ncontrols

mod

eratesamplesiz

e,no

controlsda

tacollection

approp

riate,reportin

gcomprehensiv

e,miss

ing

data

describ

ed

6x

x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Jones,2011,

Ado

lescent

cancer

survivors:

identity

parado

xan

dtheneed

tobelong

[34]

Qua

litative

N=

12ad

olescent

cancer

survivors

betw

eenthe

ageof

12an

d21

attim

eof

interview,

post-

treatm

ent

�Ado

lescentc

ancers

urvivo

rsexperie

nced

both

riskan

dprotectiv

efactorsa

fter

cancer

treatm

ent.

�Ado

lescentsstruggledto

form

anidentitythat

includ

edbo

ththeirc

ancer

andtheirs

urvivo

rexp

erience

�Ado

lescentsattempted

tofin

daway

tobelong

and

receivesocialsupp

orttha

tprom

oted

theirh

ealth

.�

Participan

tsrepo

rted

finding

meaning

andpo

sitive

benefitsfrom

facing

their

disease.

Researchqu

estio

nclearly

stated;q

ualitative

approa

chclearly

justified;

stud

ycontextc

learly

describ

ed;m

etho

dof

data

collectionclearly

describ

ed;a

nalysis

approp

riate

forr

esearch

questio

n

6x

Kim

,2013

Psycho

logical

distress

inAY

Asurvivorso

fchild

hood

cancer

inKorea.[3

5]

Cross-sectio

nal

survey-based

stud

y

N=

223Korean

child

hood

cancer

survivors,

betw

een

15–39years

ofage.

�20%

ofpa

rticipan

tswere

classifi

edas

psycho

logically

distressed

�Sign

ificant

levelsof

psycho

logicald

istress

were

associated

with

age,

econ

omicstatus,a

ndtim

esin

cediagno

sis.

Mod

eratesamplesiz

e,no

compa

rison

popu

latio

n,da

tacollection

approp

riate,A

ppropriate

analysis,

repo

rtingclearly

describ

ed

4x

Kim

,2014Life

after

cancer.[3

6]

Cross-sectio

nal

survey-based.

Korean

adolescent

survivorso

fchild

hood

cancer

(n=

223,

diagno

sed

priortoage

19years,

currenta

ge15–29years),

recruited

from

websites

andad

vocacy

grou

ps

�Childho

odcancer

survivors

perceive

publicstigma

�Increasedperceptio

nsof

stigmaassociated

with

increasedpa

tient-reported

sham

ean

dself-blame,an

ddecreasedpa

tient-reported

socialsupp

orta

nddisclosure

ofcancer-history.

�Pa

tient

repo

rted

sham

e,self-blame,an

dpo

orsocial

supp

orta

ssociatedwith

psycho

logicald

istress.

Mod

eratesamplesiz

e,no

controlsam

ple,da

tacollectionan

dan

alyses

approp

riate,reportin

gclearly

describ

ed.

6x

x

(Contin

ued)


S542 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Kirc

hhoff

,2011,

Physical,

mental,an

dneurocog

nitiv

estatus

and

employ

ment

outcom

esin

thechild

hood

cancer

survivor

stud

ycoho

rt.[3

7]

Cross

sectiona

lstud

ydesig

nusingda

tafrom

the

second

wave

oftheUS

CCSS

coho

rtstud

y.

N=

3,763

child

hood

cancer

survivorso

ver

theageof

25at

timeof

survey

�Po

orph

ysicalhealth

was

associated

with

analmost

eigh

tfold

high

erris

kof

health-related

unem

ploy

ment(P

<0.001)

compa

redto

survivorsw

ithno

rmalph

ysicalhealth.

�Employ

edfemalesurvivors

with

task

efficiency,

emotiona

lregulation,

and

mem

orylim

itatio

nswere

13%

to20%

(P<

0.05

fora

ll)less

likelyto

workin

professio

nalo

rman

agerial

occupa

tions

than

norm

s.App

roximately35%

ofsurvivorsind

icatinghealth

relatedun

employ

mento

rseekingworkha

dpo

ormentalh

ealth

�Su

rvivorsu

nemploy

edbu

tseekingworkalso

had

depressio

n,somatization,

andneurocog

nitiv

edeficits

inlevelsab

ovetheno

rms.

Large

samplesiz

e;no

controls,

butstudy

questio

ndidno

trequire

controls.

Datacollection

approp

riate

tostud

ymetho

d;ap

prop

riate

analysis;

evidence

deriv

edfrom

high

quality

coho

rtstud

y;repo

rtingclearly

describ

ed;issuesw

ithmiss

ingda

taclearly

describ

ed.**

4x

x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Kirc

hhoff

,2014

Childho

odcancer

survivors’

prim

arycare

andfollo

w-up

experie

nces.[3

8]

Qua

litative-

cross-

sectiona

lusingsemi-

structured

teleph

one

interviews

N=

53ad

ult

CCS

rand

omly

selected

from

SEER

registry,(

>21

atdx

)

�Mostsurvivo

rsha

dacurrent

prim

arycare

physician

(PCP)

(83%

)�

Alm

osth

alfwereno

tworrie

dab

outh

ealth

.�

Detaileddiscussio

nsab

out

cancer

historywith

PCP

wererare

�Fe

wsurvivorsh

ada

follo

w-upcare

plan

buto

ver

halfthou

ghtS

urvivo

rship

CarePlan

(SCP)

could

empo

wer

theirm

edical

decisio

nmak

ing

�1/3wereskeptic

alab

outthe

usefulness

ofsurvivorship

care

plan

andsomewere

worrie

dab

outh

ealth

-care

cost

�Childho

odcancer

survivors

need

better

care

coordina

tion.

Man

ydidno

tdiscusstheircancer

history

with

theirc

urrent

PCPan

dmosth

aveno

SCP.

Researchqu

estio

nclearly

stated.Q

ualitative

approa

chclearly

justified.

Stud

ycontextc

learly

describ

ed.R

oleof

the

researcher

clearly

describ

ed.S

ampling

strategy

isap

prop

riate,

limita

tions

ofthisclearly

ackn

owledg

ed.M

etho

dof

data

collectionclearly

describ

edbu

ttheycould

elab

oratemoreon

the

specificqu

estio

nsasked.

6x

(Contin

ued)


S544 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Kirc

hhoff

,Krull,

2011

Occup

ationa

lou

tcom

esof

adult

child

hood

cancer

survivors:A

repo

rtfrom

the

child

hood

cancer

survivor

stud

y.[39]

Cross

sectiona

lstud

yusing

U.S.C

CSS

data

N=

4845

currently

employ

edsurvivors

aged

>25

years

N=

1727

siblin

gs

�Su

rvivorsw

ereless

oftenin

high

er-skilled

Man

agerial/P

rofessiona

loccupa

tions

(relativeris

k,0.93;9

5%confi

denceinterval

0.89-0.98)

than

theirs

iblin

gs.

�Su

rvivorsw

howereblack,

werediagno

sedat

ayo

unger

age,or

hadhigh

-dosecran

ial

radiationwereless

likelyto

hold

Professio

nal

occupa

tions

than

other

survivors.

�Fe

malesurvivors’lik

elihoo

dof

beingin

full-tim

eProfessio

nalo

ccup

ations

(27%

)was

lower

than

male

survivors(42%)a

ndfemale

(41%

)and

male(50%

)sib

lings.

�Su

rvivors’person

alincome

was

lower

than

siblin

gswith

ineach

ofthe3

occupa

tiona

lcategoriesin

mod

elsa

djustedfor

socio-demog

raph

ics

Large

samplewith

siblin

gcontrols;

data

collection

approp

riate

tostud

ymetho

d;ap

prop

riate

analysis;

evidence

deriv

edfrom

high

quality

coho

rtstud

ies;

repo

rtingiscomprehensiv

eclearly

describ

ed;issues

with

follo

w-upor

miss

ing

data

clearly

describ

ed.**

4x

(Contin

ued)



PPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Klassen,2

011

Identifying

determ

inan

tsof

quality

oflifeof

child

ren

with

cancer

andchild

hood

cancer

survivors:A

system

atic

review

.[40]

System

atic

Reviewof

descrip

tive

stud

ies

N=

58stud

ies

ofQOLin

child

hood

cancer

survivors

�Stud

iesd

escribed

239factors

(50un

ique

factors)aff

ectin

gQOL.

�Mostv

ariables

represent

medicalan

dtreatm

ent

factorsw

ithless

research

attentionpa

idto

child

and

family

factors.

�centraln

ervo

ussystem

(CNS)

orbraintumor

patie

ntso

ntreatm

enta

ndsurvivorsh

adpo

orer

QOL

compa

redwith

patie

ntsw

itheither

leuk

emia

orlymph

oma

�Childrenwho

experie

nced

arelapsewerefoun

dto

have

poorer

QOLdu

ring

treatm

ento

rsurvivo

rship

�Sy

mptom

sofan

xiety,

depressio

nan

dpsycho

logicald

istress,a

ndpa

rentalQOLwererelated

topo

orer

child

QOL.

Relevan

tstudies

includ

ed;

didno

tassessfor

quality

ofstud

ies;Reasona

bleto

combine

results

inthis

way;

Impo

rtan

toutcomes

considered.**

5x

Klosky,2012,

Risk

yhealth

behavior

amon

gad

olescentsin

theCCSS

coho

rt.[4

1]

Cross-sectio

nal

U.S.C

CSS

stud

y.

N=

307

Ado

lescent

survivorsa

ndN

=97

adolescent

siblin

gsof

CCS

survivors.

Participan

tswere

diagno

sed

betw

eenages

0–3.

�The

prevalence

ofris

kyhealth

behaviors(sexu

albehavior,tob

acco,alcoh

olor

illicitdrug

use)

amon

gad

olescent

survivorsw

ascompa

rableto

siblin

gbehaviorsu

singcontinuo

usda

ta.

�In

multiv

ariate

analyses,

survivorsw

ereless

likelyto

engage

insm

okelesstob

acco

andalcoho

luse

orto

engage

inbing

edrinking

.�

good

mentalh

ealth

was

protectiv

eforr

iskyhealth

behaviors.

�Aggressivehealth

education

effortsshou

ldtarget

survivors.

Mod

eratesamplesiz

ewith

siblin

gcontrols,

Stud

yis

generalizableto

survivors

diagno

sedat

avery

youn

gage.Siblingcontrols

couldresultin

underestim

ationof

survivor

risky

behavior

givenevidence

ofheavy

drinking

andsm

okingin

somesubg

roup

sof

siblin

gs.

4x

(Contin

ued)


S546 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Klosky,2013,

Smok

elessa

nddu

altoba

cco

useam

ong

males

surviving

child

hood

cancer:a

repo

rtfrom

the

Childho

odCan

cer

Survivor

Stud

y.[42]

Cross-sectio

nal

coho

rtstud

y(U

.S.C

CSS

)

N=

3378

CCS

males

from

theU.S.

CCSS

and

controlswere

chosen

from

theNationa

lSu

rvey

onDrugUse

and

Health

.

�Amon

gmalesurvivors:8.3%

werecurrentsmok

eless

toba

ccousersa

nd2.3%

were

currentd

ualtob

acco

users

�Su

rvivorsw

ereless

likely

than

popu

latio

nmales

torepo

rtsm

okelesstob

acco

use(SIR

=0.64,9

5%)o

rdu

alusetoba

ccouse

(SIR

=0.37)

�Non

-white

survivorsa

ged

35–49weremorelik

elyto

usesm

okelesstob

acco

(SIR

2.32)

�Sm

okelesstob

acco

use

was

associated

(p<

0.05)

with

youn

gera

geat

diagno

sis,low

ereducation,

beingmarrie

dor

divo

rced/separated

and

notlivingin

the

northeastern

US.

History

ofcardiovascular-a

nd/or

pulm

onarytoxic

treatm

entw

asprotectiv

e�Dua

ltob

acco

usewas

associated

with

youn

ger

ageat

diagno

sis,low

ereducation,

divo

rce/

sepa

ratio

n,high

psycho

logicald

istress.

Havingactiv

ehearto

rcirculatorycond

ition

swas

protectiv

e�Sm

okelesstob

acco

and

dualtoba

ccousewas

generally

lowam

ong

child

hood

cancer

survivor.

�Finding

ssug

gestthat

toba

ccousescreeningshou

ldbe

expa

nded

toinclud

esm

okelesstob

acco

usean

dthat

smok

elesstob

acco

educationan

dcessation

interventio

nshou

ldbe

prov

ided.

Large

samplesiz

e,da

tacollectionap

prop

riate,

strong

analysis,

evidence

deriv

edfrom

high

quality

coho

rtstud

y,repo

rting

comprehensiv

ean

dclearly

describ

ed.**

4x

(Contin

ued)



PPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Klosky,2014,

Risk

ysexu

albehavior

inad

olescent

survivorso

fchild

hood

cancer:a

repo

rtfrom

the

Childho

odCan

cer

Survivor

Stud

y.[43]

Cross-sectio

nal

coho

rtstud

y,U.S.C

CSS

N=

307

survivorso

fchild

hood

cancer

age

14–20an

dN

=97

siblin

gcontrols

�Risk

ysexu

albehavior

inad

olescentsC

CSis

associated

with

cancer

type,

timesin

cediagno

sis,

psycho

logicalh

ealth

,alcoh

oluse,an

dpeer

influ

ences.

Identifi

edris

kfactors

includ

e:�Diagn

osisof

central

nervou

ssystem

cancer

(p<

0.05)

�Nohistoryof

beer

orwine

consum

ption(p

=0.01)

�Fe

wer

negativ

epeer

influ

ences(p

=0.02)

associated

with

decreased

riskof

early

intercou

rse

�Goo

dpsycho

logicalh

ealth

(scores�

–1.5

SDon

the

CHIP-A

E)a

ssociatedwith

decreasedris

kof

multip

lelifetim

epa

rtners

(p=

0.01)

�Increasedtim

efrom

diagno

sis(p

=0.02)a

ndpsycho

logicalh

ealth

(p<

0.01)a

ssociatedwith

decreasedris

kof

unprotectedsexat

last

intercou

rse,bu

thigh

parent

education

associated

with

increased

risk(p

=0.01)

�Needforimplem

entin

gpsycho

-edu

catio

nal

interventio

nsearlier

inthe

cancer

trajectory

forthe

prom

otionof

safers

exua

lbehaviors,pa

rticularly

durin

gperio

dsof

elevated

health

vulnerab

ility.

Mod

eratesamplesiz

e,sib

lingcontrols,

data

collectionmetho

dap

prop

riate,a

ppropriate

analysis,

repo

rtingis

comprehensiv

e,iss

ues

clearly

describ

ed.

4x

(Contin

ued)


S548 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Kuehn

i,2012,

Edu

catio

nal

achievem

entin

Swiss

child

hood

cancer

survivors

compa

redwith

thegeneral

popu

latio

n.[44]

Cross

sectiona

lpo

stalsurvey,

Swiss

CCSS

N=

961CCS

aged

20–40,

CCSwere

<age16

atdx

,were5+

years

from

dx.

Con

trols,ages

20–40,

were

selected

from

respon

dents

totheSw

issHealth

Survey,a

natio

nally

representativ

eteleph

one

survey

of30,179.

�One-third

ofsurvivors

encoun

terededucationa

lprob

lemsd

uringscho

oling

(30%

repeated

1year,a

nd35%

received

supp

ortiv

etutorin

g).

�Moresurvivorstha

ncontrolsachieved

compu

lsory

scho

olingon

ly(8.7%

vs5.2%

)and

fewer

acqu

iredaun

iversitydegree

(7.3%

vs11%),bu

tmore

survivorstha

ncontrols

achieved

anup

pers

econ

dary

education(36.1vs

24.1%).

�In

thoseaged

>27

years,

diffe

rences

incompu

lsory

scho

olingan

dun

iversity

educationlargely

disapp

eared.

�In

survivorsa

ndcontrols,

sex,

natio

nality,lang

uage

region

,and

migratio

nba

ckgrou

ndwerestrong

predictors

ofachievem

ent.

�Su

rvivorso

fcentraln

ervo

ussystem

tumorso

rtho

sewho

hadarelapseha

dpo

orer

outcom

es(P

<.05).

�With

theexceptionof

patie

ntsw

hoha

dcentral

nervou

ssystem

tumorsa

ndthosewho

experie

nced

arelapse,thefin

aleducationa

lachievem

entinsurvivorso

fchild

cancer

was

compa

rable

tothat

ofthegeneral

popu

latio

n.

Large

samplesiz

ewith

representativ

epo

pulatio

ncontrols;

data

collection

metho

ddiffe

redfor

compa

rison

grou

p;ap

prop

riate

analysis;

evidence

deriv

edfrom

high

quality

coho

rtstud

y;repo

rtingcomprehensiv

e,clearly

describ

ed.**

4x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Kurtz,2

011

Psychiatric

aspectso

fpediatric

cancer.[4

5]

Narrativ

ereview

Not

repo

rted

�Su

rvivorsr

eport

occurrence

ofavoida

nce,

hyper-arou

sal,an

dintrusivethou

ghtsan

dpo

sttrau

maticstress

symptom

atolog

y�

Sign

ificantly

increased

lifetim

eris

kof

suicidal

ideatio

nin

child

hood

cancer

survivorsc

ompa

red

with

siblin

gcontrols.

�Brain

tumor

survivors

show

edincreaseddistress

anddepressio

ncompa

red

with

siblin

gs.

�Su

rvivorso

favarie

tyof

child

hood

cancersW

ere

foun

dto

have

increased

depressio

n,somatization,

anddistress

compa

redwith

siblin

gs

Nometho

dology

isinclud

ed.Impo

rtan

tou

tcom

esconsidered

5x

x

Kwak

,2013,

Prevalence

and

predictors

ofpo

st-traum

atic

stress

symptom

sin

adolescent

and

youn

gad

ult

cancer

survivors:a

1-year

follo

w-up

stud

y[46]

Prospective

coho

rtstud

ywith

data

collected

with

in4mo

ofdx

,and

follo

w-upat

6an

d12

mon

ths.

Patie

ntsw

ere

recruitedfrom

5tertiary

care

acad

emic

medical

centers.

N=

151AY

Awith

cancer,

ages

15–39with

N=

111

baselin

ean

dN

=87

atfollo

w-upfor

thosediagno

sed

atages

14–19.

�At6

mon

ths3

9%of

all

participan

tsrepo

rted

mod

erateto

severe

post-traum

aticstress

symptom

s(PT

SS).

�There

wereno

chan

gesin

levelo

fPT

SSscao

res

betw

een6-mon

than

d12

mon

thfollo

w-upfor

thoseaged

14–19at

diagno

sis.

�In

multiv

ariate

analysis,

having

cancer

asachild

was

nota

significiant

predictorfor

PTSS

atfollo

w-up.

Smallsam

plesiz

e,2follo

w-upwaves,d

ata

collectionap

prop

riate,

approp

riate

analysisbu

tlargenu

mbero

fco-variatesm

ight

increasesr

iskfortyp

eII

error.Evidencederiv

edfrom

high

quality

coho

rtstud

y,repo

rting

comprehensiv

ean

dclearly

describ

edbu

tmultiv

ariate

sub-an

alysis

notp

erform

edforthe

child

hood

cancer

survivorss

eparately.

4x

(Contin

ued)


S550 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Li,2012

Adescrip

tive

stud

yof

the

psycho

social

well-b

eing

and

quality

oflife

ofchild

hood

cancer

survivorsin

Hon

gKon

g.[47]

Cross-sectio

nal

survey-based

N=

137Hon

gKon

gChinese

CCSaged

9–16

years

�52.6%

ofCCSrepo

rted

low

self-esteem

andhigh

levels

ofdepressio

n�

Greater

symptom

sof

depressio

nin

CCSwere

associated

with

high

erstate

anxiety,lower

self-esteem,

andpo

orer

QoL

.�

Cop

ing:

41.6%

reliedon

emotionfocused;

36.5%

used

mixed

strategies;

21.9%

reliedon

prob

lem-fo

cused

�App

ropriate

andeff

ectiv

epsycho

socialinterventio

nsshou

ldconsider

issueso

fself-esteem

andcoping

.

Mod

eratesamplesiz

ewith

nocontrols,

data

collectionap

prop

riate,

repo

rtingcomprehensiv

ean

dclearly

describ

ed,

6x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Li,2013,T

heim

pact

ofcancer

onthe

physical,

psycho

logical

andsocial

well-b

eing

ofchild

hood

cancer

survivors.[48]

Mixed

Metho

ds,

crosss

ectio

nal

survey

with

qualita

tive

interviews

compa

redto

popu

latio

nno

rms,

N=

137Hon

gKon

gCCSaged

9–16

years,

receiving

medical

follo

w-up

procedures

atou

t-pa

tient

clinic.E

ach

filledou

tstan

dardized

measureso

ndepressio

nan

dself-esteem.

N=

15(ofthe

137)

selected

for

semi-structured

interview;

Forc

ompa

rison

purposes,

participan

tsfrom

aprevious

survey

were

used:h

ealth

ychild

renn

=245ages

9–12

andn

=1555

ages

12–16)

used

from

prior

coho

rts

�Morethan

halfof

participan

tspresented

depressiv

esymptom

s�

Meandepressiv

esymptom

scores

forc

hildho

odcancer

survivorsw

erestatistically

significan

thighertha

nthoseof

scho

olchild

ren

with

outc

ancer(p

=0.01)

�Meanself-esteem

scores

forthe

survivorsw

ere

statistically

significan

tlower

(p<

0.01)

�Qua

litativeinterviews

indicatedthat

cancer

and

itstreatm

entshave

great

impa

cton

daily

lives

ofchild

hood

cancer

survivors

�Musth

elpsurvivors

developapo

sitiveview

oftheim

pact

that

thecancer

experie

nceha

dha

dtheir

lives

Mod

eratesamplesiz

e,po

pulatio

nda

taused

ascontrols(but

nomatching

andda

tawas

not

merged),d

atacollection

approp

riate,a

ppropriate

analysis,

evidence

deriv

edfrom

high

quality

coho

rtstud

y,repo

rting

comprehensiv

ean

dclearly

describ

ed.C

hoice

ofCCSou

tpatients

receivingafollo

w-up

procedurecouldbias

results

towards

greater

distress.S

tudy

context

clearly

describ

ed

4x

x

(Contin

ued)


S552 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Lie,

2015

Prov

iding

inform

ation

abou

tlate

effectsafter

child

hood

cancer:

Lymph

oma

survivors’

preferencesfor

wha

t,ho

wan

dwhen.[49]

Qua

litative,

Survivorso

fchild

hood

lymph

oma

[n=

34),mean

ageat

diagno

sis=

13,

meancurrent

age37

enrolled

in5focus

grou

ps

�Pa

tientsw

antedto

know

abou

tpossib

lelate

effects,

butinformationshou

ldbe

specificfore

achpa

tient,

commun

icated

inperson

with

writtenfollo

w-up.

Learningab

outlateeff

ects

atage25

was

better

than

hearingab

outittoo

soon

aftere

ndof

treatm

ent.

�In

additio

nto

patie

nt-reportedpriorities

regardingrepo

rting

inform

ationform

edical

late

effects,p

atients

endo

rseneed

for

coun

selin

gregarding:

�Finan

cialcoun

selin

g�So

cialsecuritybenefits

�Medicalinsurance

�Pa

tientsr

eportsignifican

tsuffe

ringfrom

econ

omic

hardship

Focusg

roup

participan

tswereoldera

nddiagno

sed

earlier

compa

redto

non-pa

rticipan

ts.Low

respon

serate

tooriginal

stud

y(58%

)and

tofocus

grou

pstud

y(50%

);pa

rticipan

tsfrom

aprevious

stud

ymay

under-representthe

sickestan

dhealthiest

survivors.Streng

ths

includ

eun

iversala

ccess

tocare

(inNorway)a

ndthe25

year

averagesin

cediagno

sisallowsfor

abreath

ofexperie

nce.

6x

x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Lun

d,2011,A

system

atic

review

ofstud

ieso

npsycho

social

late

effectsof

child

hood

cancer:

Structures

ofsocietyan

dmetho

dological

pitfallsmay

challeng

ethe

conclu-

sions.[5

0]

System

atic

Reviewof

descrip

tive

stud

ies

N=

41descrip

tive

stud

iesr

elated

topsycho

-social

late

effects

�Su

rvivorsd

escribeHRQoL

asno

rmalor

better

than

controls.

How

ever,m

osta

lldiagno

sticsubg

roup

srepo

rtpsycho

social

impa

irment.

�Centralnervou

ssystem

tumor

survivorsh

ave

significan

tpsychosocial

prob

lemsinpsycho

logical

andsociallate

effects

compa

redto

otherc

ancer

typesa

ndpeers.

�Negativeou

tcom

esinclud

edhigh

erris

kfor

unem

ploy

ment,high

errate

ofdepressio

n,an

dlow

HRQoL

.Negative

outcom

eswereassociated

with

cran

ialrad

iatio

ntherap

y,femalegend

er,a

ndyo

ungageat

diagno

sis.

�Metho

dologicalw

eakn

esses

incurrentstudies

hamper

know

ledg

eof

CCS.

Impo

rtan

t,relevant

stud

ies

includ

ed;a

ppropriately

assessed

forq

ualityof

stud

ies;reason

ableto

combine

results

inthis

way;impo

rtan

toutcomes

considered.**

5x

xx

(Contin

ued)


S554 Lown et al.SU

PPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Lun

d,2013,

Hospital

contactfor

mental

disordersin

survivorso

fchild

hood

cancer

and

theirs

iblin

gsin

Denmark:

apo

pulatio

n-ba

sedcoho

rtstud

y.[51]

Cross-sectio

nal

popu

latio

n-ba

sedcoho

rtstud

y

N=

7,085Dan

ishchild

rentreated

forc

ancerb

ycontem

porary

protocol

betw

een

1975–2010.

Con

trolsw

ere

CCSsib

lings-

N=

13,105

�Su

rvivorso

fchild

hood

cancer

wereat

increased

riskof

hospita

lcon

tact

for

mentald

isordersw

ithha

zard

ratio

sof1.50

(95%

1.32–1.69)

form

ales

and

1.26

(1.10–1.44)for

females.

�Children

<10

atdiagno

sisha

dthehigh

estrisk

�Increasedris

kswereseem

insurvivorso

fCNS

tumors,hematolog

ical

maligna

nciesa

ndsolid

tumors.

�Su

rvivorsh

adhigh

erris

kof

neurod

evelop

-mental,

emotiona

land

behavioral

disorderstha

npo

pulatio

nba

sedcompa

rison

sand

siblin

gs.

�Malesurvivorsh

adhigh

erris

kforu

nipo

lar

depressio

n.�

Siblings

hadno

excess

risk

form

entald

isorders.

�Siblings

who

wereyo

ungat

thetim

eof

cancer

diagno

sisof

thesurvivor

wereat

increasedris

kfor

mentald

isorders,older

than

15yearsa

tdiagn

osis

wereat

lower

riskthan

generalp

opulation

�CCSshou

ldbe

follo

wed

upform

entalh

ealth

late

effects,especially

those

diagno

sedat

ayo

ungage

�Clin

icians

shou

ldbe

aware

that

siblin

gswho

were

youn

gat

thetim

eof

cancer

diagno

sismight

beat

increasedris

kform

ental

health

disorders

Large

samplesiz

ewith

siblin

gcontrols,

data

collectionap

prop

riate,

approp

riate

analysis,

evidence

deriv

edfrom

high

quality

coho

rtstud

y,repo

rtingcomprehensiv

ean

dclearly

describ

ed.**

4x

(Contin

ued)



PPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Mau

rice-Stam

,2011

[52]

Cross

sectiona

lsurvey-based

N=

77Dutch

survivorsa

ged

8–18

�Burdenwas

associated

with

HRQoL

(−),an

xiety(+

),po

sttrau

maticstress

symptom

s(+)

and

behavioralprob

lems.

�Benefitd

idno

tcorrelate

with

thepsycho

logical

outcom

es.

�The

oldera

geat

stud

yan

dat

diagno

sis,the

high

erbenefit

thechild

repo

rted;

r=0.27,p

<0.05

and

r=0.31,p

<0.01

respectiv

ely.

�Su

bsequently,the

more

timeelap

sedsin

cetheend

oftreatm

ent,thelower

benefit

andbu

rden

were

experie

nced

(p<

0.05):

<1year

aftertreatment

benefit

M=

36.2

(SD

=6.6)

andbu

rden

M=

18.4

(SD

=5.6)

versus

�1year

after

treatm

entb

enefitM

=30.7

(SD

=8.5)

andbu

rden

M=

15.5

(SD

=5.1).

�Brain

tumor

survivors

repo

rted

high

erlevelsof

burden

than

child

renwith

adiffe

rent

cancer

diagno

sis.

�These

results

suggesttha

tthelevelo

fperceived

burden

ispo

ssibly

abetter

predictoro

fdistress

than

theam

ount

ofbenefit

the

child

experie

nces.

�Po

sitiveexperie

nces

dono

tsim

plyim

plyan

absenceof

distress

orha

rmfuleffe

cts

smallsam

plesiz

e;da

tacollectionap

prop

riate

tostud

ymetho

d;ap

prop

riate

analysis;

repo

rtingcomprehensiv

e,clearly

describ

ed;

4x

(Contin

ued)


S556 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Mila

m,2

015,

Can

cer-related

follo

w-upcare

amon

gHisp

anican

dno

n-Hisp

anic

child

hood

cancer

survivors:The

Project

Forw

ard

stud

y.[53]

Cross-sectio

nal

survey

-based

N=

193Los

Ang

eles

coun

tyCCSrand

omly

selected

from

SEER

registry.

CCSweredx

betw

een

2000–2007,

54%

areHisp

anic.

Nocontrols.

�73%

repo

rted

acancer

follo

w-upwith

inthe2

previous

years,po

sitively

associated

with

having

health

insurance,white

ethn

icity

(vs.Hisp

anic),

youn

gera

gean

dgreater

treatm

entintensity

(p<

0.05)

�96%

repo

rted

anintent

toreceivefollo

w-upcare

inthenext

2years,po

sitively

associated

with

having

health

insurancean

dgreaters

elf-effi

cacy

(p<

0.05)

�Hisp

anicsa

ndolder

child

hood

cancer

survivors

weremorelik

elyto

lack

previous

follo

w-upcare

�Interventio

nstargeting

improv

edself-e

fficacy

may

help

increase

intent

toreceivefollo

w-upcare

for

thispo

pulatio

n

Mod

eratesamplesiz

e,no

controls,

butc

ompa

rison

sweremad

ebetw

eenwhite,

Hisp

anican

dother

sub-grou

psprov

iding

impo

rtan

tdataon

understudied

popu

latio

n.App

ropriate

analysis,

evidence

deriv

edfrom

high

quality

stud

y,repo

rtingcomprehensiv

ean

dclearly

describ

ed.

4x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Natha

n,2011

Criticaliss

ues

intran

sition

and

survivorship

fora

dolescents

andyo

ung

adultswith

cancers.[54]

Opinion

Descriptio

nof

issue,srelatedto

typical

experie

nces

oftran

sitionfrom

dxthroug

hstages

oftx

and

long

-term

follo

w-upcare

byAY

As,

mod

elso

fsurvivorship

care

forA

YAarepresented,

currentsystem

(Can

ada)

isdescrib

edan

dop

portun

ities

forr

esearchare

presented.

�Tran

sitiona

lservicestha

tshou

ldbe

available

throug

hout

thisjourney

includ

ehealth-related

education,

health

surveilla

ncean

dscreening,

man

agem

ento

fcancer-related

complications,a

ndpsycho

socialsupp

ort

relevant

totheir

developm

entaln

eeds.

�Su

rvivorsr

equire

lifelon

gcare

that

focusesn

oton

lyon

themedicalris

ksarising

from

theirc

ancertherapy,

buta

lsothepsycho

social,

educationa

l,an

dvo

catio

nal

implications

ofsurviving

cancer.

�Becau

seman

ycommun

ityhealth

care

prov

iderslack

familiarity

with

thehealth

risks

associated

with

child

hood

orad

olescent/you

ngad

ult

cancer,survivo

rsmusth

ave

sufficienth

ealth

know

ledg

eto

advo

cate

forr

isk-based

cancer-related

follo

w-up;

theprov

ision

ofa

treatm

ent

Com

prehensiv

ereview

oftran

sitioniss

uesfaced

byad

olescentsa

ndyo

ung

adults.

Thisisa

thorou

ghreview

oftheiss

ues

ending

with

clear

recommenda

tions.

7x

(Contin

ued)


S558 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Nilsson,

2014,

‘Will

Ibeable

tohave

aba

by?’Results

from

onlin

efocusg

roup

discussio

nswith

child

hood

cancer

survivorsin

Sweden

[55]

Cross-sectio

nal

coho

rtstud

ywhere

qualita

tive

data

were

collected

throug

h39

onlin

efocus

grou

pdiscussio

ns

N=

133cancer

survivors1

6–24

yearso

ld,

�5yearsa

fter

diagno

sis

�Risk

ofinfertility

was

describ

edas

having

anegativ

eim

pact

onwell-b

eing

andintim

ate

relatio

nships

�Pa

rticipan

tsdescrib

edhesitationab

outb

ecom

ing

apa

rent

dueto

perceived

oran

ticipated

physicalan

dpsycho

logicalcon

sequ

ences

ofhaving

hadcancer

�Achieving

parentho

od,

whether

orno

twith

biolog

icalchild

ren,

isan

area

that

needstobe

addressedby

health

care

services

Mod

eratesamplesiz

e,no

controls,

research

questio

nclearly

stated,

qualita

tiveap

proa

chjustified,roleof

researcher

clearly

describ

ed.S

ampling

strategy

approp

riate

for

research

questio

n.Metho

dof

data

collectionclearly

describ

ed.

6

Ottaviani,2

013

Socioo

ccup

a-tio

nala

ndph

ysical

outcom

esmore

than

20years

afterthe

diagno

sisof

osteosarcoma

inchild

renan

dad

olescents:

limbsalvage

versus

ampu

ta-

tion.[56]

Cross-sectio

nal

survey-based.

N=

38child

hood

osteosarcoma

CCSw/lim

bam

putatio

n;an

dN

=19

CCSw/lim

bsalvagesurgery,

20+

yearsfrom

dx(m

eanage,

38yrs.).S

iblin

gcontrols

�Su

rvivorsw

itham

putatio

nvs.lim

bsalvagesurgerydid

notd

iffer

byeducation,

employ

ment,marita

lstatus,h

ealth

-related

quality

oflife,an

dhealth

insurance.According

toself-report,survivorsd

idno

tdiffer

from

their

siblin

gsby

education,

health

insurance,

employ

menta

ndmarita

lstatus.

�Su

rvivorsw

ithan

ampu

tatio

nsuffe

red

significan

tlymoremental

health

distress

compa

redto

survivorsw

ithlim

bsalvage.

(p<

.05)

Smallsam

plesiz

e,compa

rison

swere

prim

arily

betw

eentw

oCCS.

Siblings

were

describ

edas

controls,

but

siblin

ginform

ationwas

deriv

edfrom

CCSrepo

rton

ly.Siblingda

tawas

not

show

n.44%

oforiginal

coho

rtlostto

follo

w-up

raising

issueso

fbias

intheremaining

sample;

6x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Ozono

,2014,

GeneralHealth

Status

andLate

Effe

ctsA

mon

gAdo

lescenta

ndYo

ungAdu

ltSu

rvivorso

fChildho

odCan

cerin

Japa

n.[57]

Cross

sectiona

lsurvey-based.

CCSan

dsib

lings:

(i)N

=185

CCSs

(mean

age23.6);dx

with

cancer

age

<18;w

ere

>5

yearss

ince

dx(m

ean15.3

yrs

since

dx);an

din

remiss

ion

>1year.

Con

trols

N=

72sib

lings

andN

=1000

from

general

popu

latio

nwho

weresim

ilarb

yagean

dgend

er.

�Allcatego

rieso

fqu

ality

oflife(Q

oL)(difficulties

inda

ilylife,ph

ysical

prob

lems,psycho

logical

stress,a

ndsocial

adap

tatio

n)were

significan

tlyworse

insurvivorsc

ompa

redto

siblin

gs.P

hysic

alprob

lems

andpsycho

logicalstress

weremuchgreaterin

survivors(p

<.01)

compa

redto

popu

latio

ncontrols.

Survivorsa

lsorepo

rted

worse

QoL

fora

lldo

mains

with

theexception

ofsocialad

aptatio

ncompa

redto

popu

latio

ncontrols.

Whilethey

measuredillicitdrug

use,

results

wereno

treported.

Mod

eratesamplesiz

e,controlsselected

from

larger

stud

yan

dmatched

byman

ykey

demog

raph

icfactors,

detailedda

tacollection

approp

riate

tostud

yqu

estio

ns.

approp

riate,b

asican

alysis

metho

dsgivenlim

ited

samplesiz

e;evidence

deriv

edfrom

high

quality

stud

y

4x

(Contin

ued)


S560 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Perez-

Cam

pepa

dros,

Type

oftumou

r,gend

eran

dtim

esin

cediagno

sisaff

ect

diffe

rently

health-related

quality

oflife

inad

olescent

survivors.

2014

[58]

Cross-sectio

nal

survey-based

78survivors

(12-20

years),

>=1

year

free

ofon

cology

treatm

ent

�HRQoL

meanscores

ofCNStumor

survivorsw

ere

lower

incompa

rison

with

non-CNStumor

inph

ysical

well-b

eing

andsocial

supp

orta

ndpeers

dimensio

ns.

�Fe

malegend

er-related

tolower

HRQoL

scores

for

both

typeso

ftumorsin

physicalwell-b

eing

and

autono

mydimensio

ns.

�Scores

onpsycho

logical

well-b

eing

,socialsup

port

andpeers,pa

rent

relatio

ns,

andho

melifean

dscho

olenvironm

entd

imensio

nsdecrease

with

leng

thof

timefrom

diagno

sis.

�Overall,

diagno

sisof

CNS

tumor

andgend

erwere

relatedto

lower

HRQoL

amon

gsurvivorsinsome

dimensio

ns.

�Tim

efrom

diagno

siswas

relatedto

impa

ired

HRQoL

inotherfeatures.

Smallsam

plesiz

e,no

healthycontrols,

descrip

tive,compa

rison

betw

eenCNStumor

survivorsa

ndotherC

CSs.

6x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Phillips-Sa

limi,

2012

Physical

andmental

health

status

andhealth

behaviorso

fchild

hood

cancer

survivors:

Finding

sfrom

the2009

BRFSS

survey.[5

9]

Cross-sectio

nal

survey-based

N=

651

child

hood

cancer

survivors

N=

142,932

non-cancer

peer

controlsfrom

the2009

BehavioralR

iskFa

ctor

and

Surveilla

nce

System

Survey

�Com

paredto

natio

nal

controlsan

dcontrolling

for

diffe

rences

inage,sex,

and

minority

status,C

CSha

dsig

nifican

tly(p

�0.001)

�po

orer

socioecono

mic

outcom

es,

�moreco-m

orbid

cond

ition

s,�lower

lifesatisfaction,

�less

socialan

dem

otiona

lsupp

ort,

�po

orer

generalh

ealth

,an

d�repo

rted

moreda

ysper

mon

thof

poor

physical

andmentalh

ealth

�Su

rvivorsw

eremore

likelyto

repo

rtbeinga

currentsmok

er

Large

samplesiz

e;po

pulatio

ncontrols;

approp

riate

analysis;

repo

rtingcomprehensiv

e,clearly

describ

ed.**

4x

Phillips,2014

Und

erstan

ding

theliv

edexperie

nceof

Latino

adolescent

and

youn

gad

ult

survivorso

fchild

hood

cancer

[60]

Qua

litative

N=

14survivors

�Fo

urthem

esdescrib

ethe

LatinoAY

Aexperie

nce:

borrow

edstreng

thof

family

andho

spita

lstaff;

sustainedpo

sitiveattitud

e;perceivedvu

lnerab

ility;

bran

dedacancer

survivor.

�Allsurvivorsr

eportedfears

andan

xietyab

outrelap

sean

don

goinghealth

concerns

Smallq

ualitativestud

y.research

questio

nclearly

stated;

qualita

tiveap

proa

chis

justified;

stud

ycontextc

learly

describ

ed;roleof

the

researcher

clearly

describ

ed;m

etho

dof

data

collectionmetho

ds,

andan

alysisclearly

describ

ed.Inclusio

nof

underrepresented

sub-grou

p.

6x

(Contin

ued)


S562 Lown et al.SU

PPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Phillips,2015

Survivorso

fchild

hood

cancer

inthe

UnitedStates:

Prevalence

and

burden

ofmorbidity.[6

1]

Cross

sectiona

lsurvey-based

stud

yusing

SEER

data

Datafrom

US

Surveilla

nce

Epidemiology

andEnd

Results

Prog

ram

(SEER),

N=

388,501

CCS

�Thiss

tudy

estim

ated

morbidity

forC

CSby

extrap

olatingfrom

US

CCSS

data

toUSSE

ER

data

toestim

atebu

rden

ofchroniccond

ition

s,neuro-

cogn

itive

dysfun

ction,

HRQoL

,and

health

status

indicators

�There

arean

estim

ated

388,501CCSin

theUSas

of1/1/11.

�Estim

ated

prevalence

for

comprom

isedph

ysical

(PCS)

andmental(MCS)

HRQOLscores

insurvivors

20to

49yearso

fagewas

16%

and18%,respectively.

�The

prop

ortio

nof

survivorsw

ithMCSscores

indicativ

eof

emotiona

lprob

lemsw

asrelativ

ely

consistentb

ytim

esin

cediagno

sis(18%

–19%

)and

agecatego

ry(16%

–20%

).�

Incontrastwith

PCS,

the

prevalence

ofcomprom

ised

MCSdeclined

with

increasin

gage.

�Su

rvivorsr

eportedpa

in(12%

),an

dan

xiety/fear

(13%

),pa

inincreasedby

agerang

ingfrom

11%-17%

.�

The

overallb

urdenon

the

health

care

system

andon

CCSisprofou

ndin

extent

andin

severity.The

complex

man

agem

ent

needsfor

multip

lemorbiditie

swill

taxhealth

care

deliv

erysystem

s.

Large

samplesiz

e;complex

andcreativ

ean

alysis

prov

ides

impo

rtan

tdata

forh

ealth

services

plan

ning

.Finding

sare

clearly

describ

ed;v

ery

high

quality

stud

ywith

unique

data.**

4x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Pivetta,

2011

Marria

gean

dpa

rentho

odam

ongCCS:

Arepo

rtfrom

the

ItalianAIE

OP

off-therapy

registry.[6

2]

Coh

ortstudy,

survey-based,

follo

wing

CCSup

to40

years

N=

6,044Italian

child

hood

cancer

survivors

aged

>18

years

compa

redto

Italian

popu

latio

nda

taprevalence

onkeyou

tcom

es.

�CCSwereless

likelyto

marry

andto

have

child

ren

compa

redto

thegeneral

popu

latio

n.�

CNSsurvivorsa

releast

likelyto

bemarrie

d.�

The

inclusionof

coun

selin

gin

thestrategies

ofman

agem

enta

ndlong

-term

surveilla

nceof

child

hood

cancer

patie

nts

couldbe

beneficialto

survivorsa

stheyap

proa

chad

ulthoo

d.

Large

samplesiz

e;long

follo

w-upperio

d;ap

prop

riate

analysisto

calculatecumulative

prob

abilitie

s;evidence

deriv

edfrom

high

quality

coho

rtstud

y;repo

rting

comprehensiv

e,clearly

describ

ed**

4x

Quinn

,2013

Miss

ing

contentfrom

health-related

quality

oflife

instruments:

interviewsw

ithyo

ungad

ult

survivorso

fchild

hood

cancer.[6

3]

Qua

litative

interview

follo

wing

stan

dardized

questio

n-na

ireso

nHRQoL

.Interviews

were

completed

usingfocus

grou

psor

face-to-face

Con

tent

analysis

performed.

N=

30yo

ung

adultC

CS(dx

<18

yearso

fage)

asub-grou

pof

alarger

grou

pof

151from

aph

onesurvey

onQoL

inlong

-term

CCS.

�The

purposeof

thestud

ywas

tobetter

identifyiss

ues

relatedto

HRQoL

amon

gyo

ungad

ultC

CSan

dto

assess

therelevancean

daccuracy

ofcurrent

stan

dardized

HRQoL

instrumentsin

this

popu

latio

n.�

Currently

used

stan

dardized

questio

nnairesfailto

includ

evitalinformation

from

survivors’perspective,

(e.g.,perceivedsenseof

self

andidentify,no

rmalcy,

relatio

nships,a

ndpa

rentho

od,a

ndfeelings

ofloss

dueto

physicalan

dpsycho

logicallim

itatio

ns).

Recruitm

ente

nded

when

saturatio

nof

them

eswas

achieved.R

esearch

questio

ns–clearly

stated;

Qua

litativeap

proa

ch,study

context,roleof

researcher,sam

pling

strategy

and

metho

dology

ford

ata

collectionallclearly

justified;w

hite,m

alean

dcollege

educationsample

limits

generalizab

ility

toallC

CS.

6x

(Contin

ued)


S564 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Rhee,2014

Impa

ctof

psycho

logical

and

cancer-related

factorso

nHRQoL

for

Korean

child

hood

cancer

survivors.[64]

Cross-sectio

nal

survey-based

Childho

odcancer

survivorss

een

inlong

-term

follo

w-upclinic

(n=

110,

mediancurrent

age11

yrs,

rang

e8–18;all

<18

year

atdiagno

sis.);

theirp

arents;

and

age-matched

healthycontrols

recruitedfrom

localschoo

ls.

�Su

rvivorsr

eportedlower

psycho

socialan

dph

ysical

HRQo.

�Amon

gsurvivors,

demog

raph

ic,treatment,

currenth

ealth

status,a

ndpsycho

logicalv

ariables

explainedmorethan

50%

ofvaria

nceforb

othQoL

sub-scales.

�Highers

elf-perceptio

nsof

appearan

ce,a

cademic

functio

n,an

dinterpersona

lrelatio

nships

(measuredby

Self-C

oncept

Inventory)

independ

ently

andlin

early

relatedto

high

erpsycho

socialqu

ality

oflife

(adjustedbeta

=0.518,

p<

0.0001).

Mod

eratesamplesiz

ean

dpeer

controls.

Data

collectionan

dan

alyses

approp

riate,reportin

gcomprehensiv

e,iss

ues

with

follo

w-upan

dmiss

ingda

tadescrib

ed.

4x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Rob

ison,

2011

Lateeff

ectsof

acute

lymph

oblastic

leuk

emia

therap

yin

patie

nts

diagno

sedat

0–20

yearso

fage.[65]

Narrativ

eReview

N=

5,760ALL

survivors

�Su

rvivorso

fchild

hood

ALLareat

increasedris

kfora

dverse

psycho

logical

outcom

esinclud

inglower

cogn

itive

functio

ning

,executivefunctio

n,depressio

nan

dsomatic

distress

�Treatm

entrelated

impa

irmentresultedin

decreasededucationa

lattainment

�Tho

seALLsurvivorsw

howereprov

ided

with

special

educationa

lservicesh

adcompa

rableeducationa

lattainmenttosib

lings,

whereas

thoseno

trepo

rtinguseof

special

educationha

dlower

educationa

lattainm

ent.

�ALLsurvivorsw

ere

significan

tlymorelik

elyto

repo

rtbeingun

employ

edcompa

redwith

siblin

gs�

Inan

alyses

stratifi

edfor

sex,

rateso

fcollege

grad

uatio

n,marria

ge,a

ndhaving

health

insurance

weresig

nifican

tlylower

amon

gALLsurvivorstha

ntheirs

iblin

gcoun

terparts.

�Low

errateso

fmarria

ge,

educationa

lattainm

ent,

andhaving

health

insuranceareassociated

with

historyof

cran

ial

radiation.

Finding

sare

basedon

stud

iesu

singlargesample

sizes

andman

ypu

blish

edstud

iesfrom

theU.S.

CCSS

.Evidencederiv

edfrom

high

quality

coho

rtstud

ies.*

*

5x

x

(Contin

ued)


S566 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Rueegg,

2013

Health

-related

quality

oflife

insurvivorso

fchild

hood

cancer:the

role

ofchronic

health

prob

lems[66]

Cross

sectiona

l,survey-based

N=

1,593

survivorsa

ndN

=695

siblin

gsfrom

theSw

issCCSS

.Meansurvivor

&sib

age

=25

yrs.Meantim

esin

cedx

is17

years.

�Allhealth

prob

lems

decreasedHRQoL

scores.

Health

prob

lemsh

adthe

biggestimpa

cton

physical

functio

ning

,generalhealth,

andenergy

andvitality.

�Onthementalh

ealth

scales,

generalh

ealth

perceptio

nwas

worse

amon

gsurvivors

compa

redto

siblin

gs.

Overallmentalh

ealth

,socialfunctio

ning

and

emotiona

lrolelim

itatio

nswereno

tdifferentb

etween

Low

erscorein

thePh

ysical

Com

ponent

Summary

was

associated

with

dxof

CNStumor,

retin

oblastom

aor

bone

tumor,h

avingsurgery,

cran

io-spina

lirrad

iatio

n,or

bone

marrow

tran

splantation,

and

oldera

ge.su

rvivorsa

ndsib

lings.

Recom

menda

tions:S

tart

focusin

gon

tailo

red

interventio

nsto

improv

ehealth

outcom

es(i.e.

cogn

itive

training

orph

ysicalactiv

ityan

dexercises)

Large

samplesiz

e;sib

ling

controls,

data

collection

approp

riate

tostud

ymetho

d;ap

prop

riate

analysis;

evidence

deriv

edfrom

high

quality

stud

y;repo

rting

clearly

describ

ed;

issuesw

ithfollo

w-upor

miss

ingda

taclearly

describ

ed.**

4x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Saha

,2014Late

effectsin

survivorso

fchild

hood

CNS

tumorstreated

onHeadStartI

andII

protocols.[67]

Cross-sectio

nal

survey-based

compa

redto

popu

latio

nno

rms.,

Survivorso

fchild

hood

brain

tumors(n

=22,

medianageat

dx0.2–7years,

mediantim

eat

stud

y15.3

years).

�Meanscores

onbehavioral

assessment(BA

SC-2)a

ndqu

ality

oflife(C

hildren’s

Health

Questionn

aire,

CHQ-PF50)sim

ilarto

popu

latio

nno

rmsa

ndwith

inaveragerang

e.

Smallsam

ple,no

controls,

data

collectionfrom

singleinstitu

tion,

basic

analyses

approp

riate

tosm

allN

,reportin

gcomprehensiv

e

4x

Schw

artz,2

011A

social-

ecolog

ical

mod

elof

read

inessfor

tran

sitionto

adult-oriented

care

for

adolescents

andyo

ung

adultswith

chronichealth

cond

ition

s.Child:C

are,

Health

andDe-

velopm

ent[68]

Cross-sectio

nal

coho

rtstud

yan

dop

inion

(mod

eldevelopm

ent),

SMARTmod

eldevelopm

ent

was

inform

edby

related

theorie

s,literature,

expert

opinionan

dpilotd

ata

collection

2prov

iders

repo

rted

ontran

sition

read

inesso

f100

consecutive

long

-term

survivorsa

ges

16+

seen

insurvivorship

clinic

�Extan

tlite

rature,exp

ert

opinion,

andpilotd

ata

collectionsupp

ortthe

relevanceof

SMART

compo

nentsa

nda

social-ecological

conceptualizationof

tran

sition.

�Prov

ider

repo

rtrevealed

that

man

ycompo

nents,

representin

gmorethan

age,

diseasekn

owledg

ean

dskills,relatedto

prov

ider

plan

sfor

tran

sferrin

gpa

tients.

�Resultssupp

ortS

MART’s

broa

dened

conceptualizationof

tran

sitionread

inessa

ndneed

fora

ssessm

ento

fmultip

lestakeholders’

perspectives

ofpa

tient

tran

sitionread

iness.

Mod

eratesamplesiz

e;ap

prop

riate

analysis;

repo

rtingcomprehensiv

e,clearly

describ

ed;issues

with

follo

w-upor

miss

ing

data

clearly

describ

ed.

4,7

x

(Contin

ued)


S568 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Schw

artz,2

012

The

roleof

beliefsin

the

relatio

nship

betw

eenhealth

prob

lemsa

ndpo

sttrau

matic

stress

inad

olescent

and

youn

gad

ult

cancer

survivors.[69]

Descriptiv

e-long

itudina

l,2tim

epo

ints

N=

140CCS

�Beliefs,a

smeasuredby

scales

oftheHealth

Com

petenceBeliefs

Inventory(H

CBI),

negativ

elyrelatedto

PTSS

whilehealth

prob

lems

positivelyrelatedto

PTSS

.�

Three

scales

ofthe

HCBI-health

perceptio

ns,

satisfactionwith

healthcare

andcogn

itive

competence—

were

significan

tmod

erators.

�The

relatio

nshipbetw

een

health

prob

lemsa

ndPT

SSwas

strong

erin

the

presence

ofless

adap

tive

beliefs.

�These

beliefsrepresent

potentially

malleable

interventio

ntargetsfor

redu

cing

PTSS

inchild

hood

cancer

survivors.

Mod

eratesamplesiz

e,ho

mog

enou

ssam

ple,da

tacollectionap

prop

riate

tostud

ymetho

d;measures

lacked

varia

nce;

approp

riate

analysis;

Reportin

gcomprehensiv

e,clearly

describ

ed

6x

x

(Contin

ued)



PPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Schw

artz,2

013

Stakeholder

valid

ationof

amod

elof

read

inessfor

tran

sitionto

adultc

are.[70]

Mixed

metho

ds:

cross-

sectiona

land

qualita

tive

interviews

andfocus

grou

ps

Ado

lescenta

ndyo

ungad

ult

CCS(n

=14),

parents

(n=

18),an

dpediatric

prov

iders

(n=

10).

�Va

lidity

oftheSM

ART

mod

elto

supp

orttransition

tocare

was

assessed

3ways:

(1)ratings

onim

portan

ceof

SMARTcompo

nents

fortransition

read

iness

usinga5-po

intscale(0–4;

ratin

gs>2supp

ort

valid

ity),(2)n

ominations

of3“m

ostimpo

rtan

t”compo

nents,an

d(3)

directed

contenta

nalysis

offocusg

roup

/interview

tran

scrip

ts.Qua

litative

data

supp

ortedthevalid

ityof

SMART,

with

minor

mod

ificatio

nsto

defin

ition

sof

compo

nents.

Qua

ntita

tiveratin

gsmet

crite

riaforv

alidity

;stakeholders

endo

rsed

all

compo

nentso

fSM

ARTas

impo

rtan

tfor

tran

sition.

Noad

ditio

nalS

MART

varia

bles

weresuggestedby

stakeholders

andthe“m

ost

impo

rtan

t”compo

nents

varie

dby

stakeholders,thu

ssupp

ortin

gthe

comprehensiv

enesso

fSM

ARTan

dneed

toinvo

lvemultip

leperspectives.S

MART

representsacomprehensiv

ean

dem

piric

ally

valid

ated

fram

eworkfortransition

research

andprog

ram

plan

ning

,sup

ported

bysurvivorso

fchild

hood

cancer,p

arents,a

ndpediatric

prov

iders.Future

research

shou

ldvalid

ate

SMARTam

ongother

popu

latio

nswith

special

health

care

needs.

Researchqu

estio

nclearly

stated;q

ualitative

approa

chclearly

justified;

stud

ycontextc

learly

describ

ed;roleof

the

researcher

clearly

describ

ed;sam

pling

strategy

approp

riate

for

research

questio

n;metho

dof

data

collection

clearly

describ

ed;m

etho

dof

data

analysisclearly

describ

ed;issuesw

ithfollo

w-upor

miss

ingda

taclearly

describ

ed

4,6

x

(Contin

ued)


S570 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Shah

,2015

Lon

g-term

psychiatric

outcom

esin

pediatric

brain

tumor

survivors.

Child’snervous

system

:ChN

S:offi

cial

journal

ofthe

International

Societyfor

PediatricNeu-

rosurgery.[71]

System

atic

review

.A

PubM

edMeSH

search

and

additio

nal

onlin

eda

taba

sesearches

includ

edpertinent

stud

ieso

npsycho

logical

deficits

inchild

hood

braincancer

survivors.

Atotalo

f17

papers

with

5320

pediatric

braintumor

patie

ntsw

ere

includ

ed.

(Meanageat

dx=

8.13

years,

meanfollo

w-up

time

=9.98

years)

�Pe

diatric

braincancer

survivorsr

eportedhigh

erIncidences

ofdepressio

n(19%

),an

xiety(20%

),suicidalideatio

n(10.9%

),schizoph

reniaan

dits

relatedpsycho

ses(9.8%

),an

dbehavioralprob

lem

(28.7%

)com

paredto

non-cancer

popu

latio

ns.

�Craniospina

lrad

iotherap

yan

d/or

surgerywas

associated

with

adverse

deficits.

�Astrocytomas

orotherg

lial

tumorsw

erelin

kedto

poorer

outcom

es.

�CONCLU

SION:

Physicians

treatin

gpediatric

braintumor

patie

ntss

houldbe

awareof

thementalh

ealth

consequences

oftreatm

ent.

Psychiatric

mon

itorin

gis

recommendedfors

urvivo

rsof

pediatric

braintumors.

Add

ition

alresearch

needs

tobe

done

toelucidatelate

outcom

esregardingtumor

type

andlocatio

n.

The

stud

iesincludedwere

subjectedto

data

extractio

nto

quan

tify

relevant

inform

ationfor

furthera

nalysis.

Right

typeso

fpa

pers

includ

ed;

Impo

rtan

t,relevant

stud

ies

includ

ed;

App

ropriately

assessed

for

quality

ofstud

ies;

Reasona

bleto

combine

results

inthisway;

Impo

rtan

toutcomes

considered.**

1x

(Contin

ued)



PPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Steele,

2013,

Predictors

ofris

k-ba

sed

medical

follo

w-up:

arepo

rtfrom

the

CCSS

[72]

RCT,

2tim

epo

ints

N=

5661

survivorsa

ges

25an

dolder

from

U.S.C

CSS

who

were

catego

rized

asat-risk

forh

eart

disease,breast

cancer,

osteop

orosis,

orno

increased

risk.

�Su

rvivorsw

ererand

omized

toreceiveinform

ationa

lpa

mph

leta

bout

general

health

risks

oramore

detailedpa

mph

letw

ithspecifichealth

riskan

dgu

idelines

inform

ation.

Regressionmod

elstested

uptake

ofrecommended

surveilla

ncean

ddiscussio

nof

risks

with

prov

ider

approx

imately24

mon

ths

later.

�There

was

noeff

ecto

fthe

writteninform

ationon

uptake

ofnecessary

screening.

�Amon

gthosewho

visited

ado

ctor

inprior2

4mon

ths,

discussin

ghealth

risks

with

doctor

was

asig

nifican

tpredictoro

fup

take

ofscreening.

�Can

cer-relatedan

xietyan

dperceivedhealth

status,

amon

gother

non-psycho

socialvaria

bles,

relatedto

engagementin

discussio

nof

health

risks

with

prov

ider.

Large

samplesiz

e;self

repo

rt&

selectionbias

possible;a

ppropriate

analysis;

miss

ingda

tadescrib

ed,evidence

deriv

edfrom

high

quality

coho

rtstud

y,repo

rting

comprehensiv

e,clearly

describ

ed.**

2,6

x

Strauser,2

012,

Enh

ancing

psycho

social

outcom

esfor

youn

gad

ult

child

hood

CNS

cancer

survivors:

impo

rtan

ceof

addressin

gvo

catio

nal

identityan

dcommun

ityintegration[73]

Cross

sectiona

lsurvey-based

45CNSsurvivors

aged

18–30

yearso

ld,m

ean

ageat

dxws8

.8years.

�Life

satisfactionwas

significan

tlycorrelated

with

positiveaff

ect,

commun

ityintegrationan

dvo

catio

nalidentity.

Smallsam

plesiz

e,useof

4stan

dardized

instruments

makefin

ding

scom

parable

tootherp

opulations,n

ewda

tato

betested

infuture

larger

stud

ies.

4x

(Contin

ued)


S572 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Strauser,2

015,

Career

read

inessin

adultsurvivo

rsof

child

hood

cancer:a

repo

rtfrom

theSt.

Jude

Life

time

Coh

ort

Stud

y.[74]

cross-sectiona

lsurvey-based

385ad

ultC

CS,

>10

yearsfrom

dx.(42.1

%male,median

age38

years

(21-62),sample

from

St.Jud

eLife

time

Coh

ortS

tudy,

selectingCCS

who

repo

rted

ever

having

been

employ

ed(fullo

rpart

time).

�17

.4%

ofCCSwere

catego

rized

ashaving

low

career

read

iness.

�There

wereno

significan

tcrosss

ectio

nalp

redictors

forc

ancer

treatm

ent-relatedfactors

andcareer

read

iness.

�lowcareer

read

inessw

asgreaterfor

CCSwho

were

unem

ploy

ed,n

oncollege

grad

uates,having

noperson

alincome.

�In

structuralequa

tion

mod

eling,

theassociations

betw

eentreatm

ent

intensity

,physic

alhealth,

ageat

diagno

sis,a

ndcareer

read

inessw

eremediatedby

emotiona

lhealth

and

vocatio

nalidentity.

�Con

clusion:

Add

ressing

career

read

inessm

aybe

impo

rtan

ttoim

prov

eem

ploy

mento

utcomes

for

adultC

CS.

Mod

eratesamplesiz

e,no

compa

rison

grou

p;sin

gle

institu

tion,

prim

arily

white

sample.

comprehensiv

eda

tacollection;

approp

riate

analysis;

evidence

deriv

edfrom

high

quality

coho

rtstud

y;samplerecruitm

ent&

respon

seclearly

describ

ed.E

xclusio

nof

nevere

mploy

edCCSan

dlowrepresentatio

nof

non-whiteslim

itsgeneralizab

ility

toall

survivors.Lackof

siblin

gor

peer

controlsmakes

itdifficultto

interpret

whether

finding

sare

unique

toCCS.

4,6

x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Stub

er,2

011,

Defining

medical

posttrau

matic

stress

amon

gyo

ungad

ult

survivorsinthe

child

hood

cancer

survivor

stud

y.[75]

Cross

sectiona

lsurvey-based

N=

6542

survivors

N=

374sib

lings

�Thiss

tudy

catego

rized

diffe

rent

levelsof

PTSD

andno

testha

tthe

prevalence

ofPT

Sin

CCS

compa

redto

siblin

gsdiffe

rsaccordingto

which

defin

ition

isused

rang

ing

from

OR

=4.2whenthe

defin

ition

meetsthefull

crite

riaplus

functio

nal

impa

irmentto1.42

when

partialsxareconsidered

alon

gwith

functio

nal

impa

irment.

�Whenexam

iningfactors

associated

with

PTSD

,the

authorsn

otethat

marita

lstatus

andem

ploy

ment

wereno

tequ

ally

associated

with

PTSD

depend

ingon

thedefin

ition

used.

�Sing

leCCSha

dgreaterr

isk(90%

greater)of

having

full

symptom

splusimpa

irment

�Unemploy

edsurvivorsh

adatw

ofoldincreasedrate

offullPT

SDwith

impa

irment.

Large

sampleof

CCSan

dmod

eratenu

mbero

fsib

lingcontrols,

approp

riate

analysis;

evidence

deriv

edfrom

high

quality

coho

rtstud

y;repo

rtingcomprehensiv

e,clearly

describ

ed.**

4x

(Contin

ued)


S574 Lown et al.SU

PPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Taylor,2

012,

Needfor

psycho

logical

follo

w-up

amon

gyo

ung

adultsurvivo

rsof

child

hood

cancer

[76]

Cross

sectiona

lsurvey-based

N=

108survivors

intheUK

�Prevalence

ofclinical

PTSD

(13.9%

)was

compa

rablewith

US

popu

latio

n.�

Risk

factorsfor

both

PTSS

andPT

SDinclud

edbeing

femalean

dhaving

more

late

effects.

�PT

SSwas

unrelatedto

diagno

sisor

treatm

ent.

�Autho

rsrecommend

routinepsycho

logical

screeningfora

llCCS.

Small-m

oderatesamplesiz

e;no

controlg

roup

,low

respon

serate

(49.5%

)ap

prop

riate

analysis;

evidence

deriv

edfrom

high

quality

coho

rtstud

ies;

repo

rtingcomprehensiv

e,clearly

describ

ed

4x

Teal,2

013

Psycho

logical

resiliencein

adolescent

and

youn

gad

ult

survivorso

flower

extrem

itybo

netumors.[77]

Cross-sectio

nal

survey-based

28CCShaving

hadlim

bsalvageor

ampu

tatio

nfor

lower

extrem

itybo

netumor.

Participan

tswereage18–32,

meanageof

25yrs,5+

yrsfrom

dx.S

ample

draw

nfrom

3pediatric

cancer

centers.

�Com

paredto

norm

ative

values,survivo

rsrepo

rted

significan

tlyless

depressiv

esymptom

sand

high

erself-evaluations

ofintellectua

lcap

abilitie

s.�

Nosig

nifican

tdifferences

insocialsupp

ort(SS

)and

benefit

finding

(BF)w

ere

foun

dbetw

eensurgicalan

dagegrou

ps.

�Males

perceived

significan

tlyhigh

erSS

than

females.S

ignifican

tpositive

correlations

betw

eenSS

andsexu

alfunctio

ning

,sexu

alexperie

nces,a

ndsatisfactionwith

sexu

alrelatio

nships.

�Negativecorrelation

betw

eenglob

alSS

and

depressio

nscores.

�BFwas

significan

tlypo

sitivelycorrelated

with

SSbu

tnot

otherv

ariables.

�Con

clusion:

socialsupp

ort

isprotectiv

efors

urvivo

rpsycho

logicala

ndsexu

alfunctio

ning

.

Smallsam

plesiz

e,no

inform

ationsupp

liedon

avgyearss

ince

dx.b

utyo

ungageindicatestha

tthesearerelativ

elyearly

stageLT

survivors.

norm

ativevalues

forp

sych

outcom

esused,h

us,n

odirect

statistical

compa

rison

sweremad

e.Sm

allsam

plesiz

elim

ited

statisticalpo

wer

andno

multiv

ariate

statistics

couldbe

performed.

6x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Term

uhlen,

2011

Twenty-five

year

follo

w-up

ofchild

hood

Wilm

stum

or:

Arepo

rtfrom

theCCSS

.[78]

Cross-sectio

nal

survey-based

stud

y

N=

1256

Wilm

sTu

mor

CCS

from

U.S.C

CSS

andcontrols,

N=

4023

siblin

gsalso

from

US

CCSS

�A

sligh

tlyhigh

erprop

ortio

nof

siblin

gsgrad

uatedfrom

college

and

hadheld

ajob;

the

diffe

rences

weremargina

llystatistically

significan

t.�

Nodiffe

rences

inmarita

lstatus,incom

e,insurance

coverage,socioecon

omic

status

andmentalh

ealth

betw

eenCCSS

andsib

lings.

Large

samplesiz

ewith

siblin

gcontrols;

selfrepo

rt&

selectionbias

possible;a

ppropriate

analysis;

evidence

deriv

edfrom

high

quality

coho

rtstud

y,repo

rting

comprehensiv

e,clearly

describ

ed.**

4x

x

Tho

mpson

,2013

Impa

ctof

child

hood

cancer

onem

erging

adult

survivors’

roman

ticrelatio

nships:a

qualita

tive

accoun

t.[79]

Qua

litative

N=

18female

CCS,

ages

18–25,

2+years

offtreatm

ent.

(CCSof

CNS

tumorsw

ere

exclud

ed.)

�Themes

that

emerged

includ

ed:redefinedlife

prioritiesa

ndperspective;

concerns

with

disclosure

ofcancer

historyan

dem

otions;n

egativebo

dyim

ageas

aresultof

illness

andtreatm

entsideeff

ects;

andworrie

sabo

utfertility

andhealth

offuture

child

ren.

�Con

clusion:

CCSdescrib

dchalleng

esin

mov

ing

towards

intim

acyin

relatio

nships.

�Con

structionof

new

survey

measuresw

asrecommended.

Researchqu

estio

nwas

clearly

stated

andit

addressesa

gapin

understand

ingan

dmeasurement;

stud

ycontextw

asclearly

describ

ed;

roleof

allco-au

thorsw

asclearly

describ

ed;

thesamplingstrategy,

metho

dology,a

ndan

alysiswas

approp

riate

forr

esearchqu

estio

n

6x

(Contin

ued)


S576 Lown et al.SU

PPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Toug

as,2015,The

potentialrole

ofbenefit

and

burden

finding

inscho

olengagemento

fyo

ung

leuk

emia

survivors:An

exploratory

stud

y.[80]

Mixed

metho

dswith

Cross

sectiona

lsurvey-based

N=

49leuk

emia

survivors

�CCSmentio

nedbenefits

from

having

hadcancer,

particularly

interpersona

lbenefits.

�Halfof

thepa

rticipan

tsmentio

nedbu

rdens,

(dom

inan

tlyph

ysicalan

dpsycho

logical).

�olders

urvivo

rsweremore

likelyto

repo

rtbenefitsin

term

sofqu

alities

and

streng

thso

fcharacter.

�Greater

elap

sedtim

esin

cedx

was

associated

with

morepsycho

logicaltyp

esof

burdens.

�A

maineff

ectind

icated

that

scho

olengagement

was

greaterfor

survivors

who

perceivedthepresence

ofbenefits.

�Aninteractioneff

ect

revealed

that

theperceptio

nof

both

benefitsa

ndbu

rdensp

redictsthe

high

estscoreso

fscho

olengagement.

Smallsam

plesiz

efors

urvey

portionof

thestud

y;no

controlg

roup

,data

collectionap

prop

riate

tostud

ymetho

d;ap

prop

riate

analysis;

repo

rtingcomprehensiv

e,clearly

describ

ed;m

ixed

metho

dology

enric

hes

finding

s.

6x

VanderG

eest,

2013,

Emotiona

ldistress

in652

Dutch

very

long

-term

survivorso

fchild

hood

cancer,u

sing

theho

spita

lan

xietyan

ddepressio

nscale

(HADS)[81]

Cross

sectiona

lstud

ymeasurin

gan

xietyan

ddepressio

n(H

ADS)

inCCS.

N=

652CCS

(medianage23

y)median

follo

w-uptim

e15

y.Po

pulatio

ncontrols

N=

440(m

ean

age51

y).

�Meanan

xiety-depressio

nscorein

CCSwas

not

diffe

rent

from

controls.

�Su

rvivorsw

ithatreatm

ent

historyinvo

lvingCNS

radiationha

dsig

nifican

tlyhigh

erHospitalA

nxiety

andDepressionScorethan

thecontrol,an

dthan

other

survivors.

Large

samplesiz

ewith

popu

latio

ncontrols.

Strong

metho

dology

includ

inglargesample

size,po

pulatio

n-ba

sed

controls,

stan

dardized

instrument,an

duseof

approp

riate

(multiv

ariate)

statisticaltechniqu

es.

Con

trolsw

eremucholder

than

survivorsb

utau

thorsn

otethat

greater

ageisno

trelated

togreaterd

istress

thus

redu

cing

thisbias.**

4x

(Contin

ued)



PPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Wakefield,

2010

The

psycho

social

impa

ctof

completing

child

hood

cancer

treatm

ent:a

system

atic

review

ofthe

literature.[82]

System

atic

Review

N=

19stud

ies,

both

qualita

tive

and

quan

tita-tiv

e,of

CCSwho

completed

cancer

treatm

ent<

5year

�po

sitivepsycho

social

outcom

esrepo

rted

attreatm

entc

ompletion,

includ

inghigh

self-w

orth,

good

behavioralcond

uct,

andim

prov

edmental

health

andsocialbehavior.

�Sign

ificant

negativ

eou

tcom

eswerealso

repo

rted

afterthe

endof

treatm

entincluding

decreasedpsycho

logical

well-b

eing

,moo

d,liv

eliness,self-esteem,a

ndincreasedan

xietyan

dprob

lem

behaviors.

�Neither

diagno

sisno

rtreatm

enttyp

ewererelated

toem

otiona

ldistress

�Reviewcitedfrequent

use

ofun

valid

ated

instruments,

lack

ofcontrols,

lack

ofmultiv

ariate

statistical

analysis,

lack

ofrelevant,

metho

dologically

rigorou

sstud

iesinthearea

(1978-2008)

Right

typeso

fpa

pers

includ

ed;A

ppropriately

assessed

forq

ualityof

stud

ies;Reasona

bleto

combine

results

inthis

way.**

5x

x

Wengenroth,

2014,L

ifepa

rtnerships

inchild

hood

cancer

survivors,their

siblin

gs,a

ndthegeneral

popu

latio

n.[83]

Cross-sectio

nal

survey

Swiss

CCSS

,with

CCS(n

=1096,

ages

<16

atdiagno

sisan

d�5years

post-therapy

),theirs

iblin

gs(n

=500),a

ndpo

pulatio

ncontrols

(n=

5593)

�Life

partnerships

less

prevalentinsurvivorstha

ncontrols(47%

and16%

ofsurvivorsw

ithpa

rtners

marrie

dvs.6

1%an

d26%

ofsib

lings,respectively)

�Current

oldera

gean

dfemalesexassociated

with

high

erod

dsof

partnership

�Historyof

priorr

adiatio

ntherap

y,HSC

T,or

CNS

tumor

associated

with

lower

odds

ofpa

rtnership

Large

samplesiz

e,bo

thsib

lingan

dpo

pulatio

ncontrols,

data

collection

andan

alysisap

prop

riate,

evidence

deriv

edfrom

high

quality

coho

rtstud

y,repo

rtingcomprehensiv

e,iss

uesw

ithmiss

ingda

taclearly

describ

ed.S

tron

gstud

ydesig

nan

dan

alysis

metho

dology.

4x

(Contin

ued)


S578 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Wengenroth,

2015

Health

-related

quality

oflife

inyo

ung

survivorso

fchild

hood

cancer.[8

4]

Cross-sectio

nal

survey-based

CCSfrom

the

Swiss

CCSS

n=

425,

ages

8–16

yearsa

nd�5years

post-therapy

;dy

ads)

compa

redto

stan

dardized

popu

latio

nno

rms

�Pa

tient-reported

psycho

logical,socialan

dscho

ol-related

well-b

eing

high

erthan

stan

dardized

popu

latio

nno

rms(ph

ysical

well-b

eing

simila

r)�

Parent-reportedqu

ality

oflifesim

ilartopo

pulatio

nno

rms,except

scho

olhigh

er(&

physical

well-b

eing

lower)

�Pa

rent-reported

Mod

eratesamplesiz

e,use

ofpo

pulatio

nno

rms,

data

collectionan

dan

alysisap

prop

riate,

evidence

deriv

edfrom

high

quality

coho

rtstud

y,repo

rtingcomprehensiv

e,iss

uesw

ithmiss

ingda

taclearly

describ

ed.

4x

Wenning

er,2

013,

Cop

ingin

long

-term

survivorso

fchild

hood

cancer:

relatio

nsto

psycho

logical

distress.[8

5]

Cross-sectio

nal

survey-based

N=

164CCS

(current

mean

age28.9

years,

meanageat

diagno

sis9

years,

�7years

post-therapy

).Excluded

patie

ntsw

ithHSC

Tor

CNS

tumors

�Fe

malesex,

currentlackof

intim

aterelatio

nshipan

dpresence

oflate

medical

effectsindepend

ently

associated

with

increased

psycho

logicald

istress

(these

varia

bles

explained

12%

ofvaria

nce)

�Su

ppressingnegativ

ethou

ghtsan

dlowlevelsof

optim

ismidentifi

edas

coping

mecha

nism

sassociated

with

worse

distress

(add

ition

ofcoping

varia

bles

explained50%

ofvaria

nce)

Mod

eratesamplesiz

e,no

compa

rison

popu

latio

n,da

tacollectionan

dan

alysisap

prop

riate,

evidence

deriv

edfrom

high

quality

coho

rtstud

y,repo

rtingcomprehensiv

e,iss

uesw

ithmiss

ingda

taclearly

describ

ed.

6x

x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Williams,2013

Screeningfor

psycho

logical

well-b

eing

inchild

hood

cancer

survivors:a

prelim

inary

assessmento

fthefeasibility

ofthestreng

than

ddifficulties

questio

nnaire

asa

parent-proxy

repo

rt.[8

6]

Cross-sectio

nal

survey

ofpa

rentso

fCCSan

dad

olescents.

Mothers

ofCCS

(n=

35;

survivor’smean

ageat

dx=

6yrs(SD

3.7),

meancurrent

age

=11

(SD

3.4),m

eanyears

post-

therap

y=

3.9

(SD

0.76)],

plus

adolescent

survivors

(n=

14,age

�15)

�50%,2

9%,2

1%,a

nd14%

ofad

olescent

survivors

repo

rted

abno

rmal

emotiona

lsym

ptom

s,cond

uctp

roblem

s,hyperactivity

,and

peer

relatio

nships

prob

lems,

respectiv

ely.

�Amon

gpa

rents,52%,2

3%,

48%

and57%

repo

rtthe

abov

e4prob

lemsintheir

child

ren,

respectiv

ely.

�Con

cordan

cepo

orbetw

een

adolescentsa

ndpa

rents

(Kap

pa−0

.13to

0.32,all

p>

0.10).

Smallsam

plesiz

e,conveniencesample,

mixed

parentsa

ndad

olescent

repo

rtwhich

was

approp

riate

for

developm

entala

ge;rates

repo

rted

sepa

rately

for

each

grou

p;Data

collectionan

dan

alysis

approp

riate,reportin

gcomprehensiv

e.

4x

Winterling

,2015,

Perceptio

nsof

Scho

olAmon

gChildho

odCan

cer

Survivors:A

Com

paris

onWith

Peers[87]

Mixed

metho

ds;

Cross-

sectiona

l,Qua

ntita

tive

survey

and

qualita

tive

semi-

structured

in-person

interviews

N=

48,C

CSfrom

Swedish

natio

nalcoh

ort

ofCCS,

(current

age

12–21,

median

5years

post-therapy,

HSC

Tpa

tients

exclud

ed),an

dN

=47

matched

peers.

�90%

ofsurvivorsr

eport

high

levelsof

well-b

eing

inscho

ol�

60%

repo

rtno

difficulties

achievingeducationa

lgoa

ls�

Survivorsm

oresatisfied

with

scho

olenvironm

ent

compa

redto

peers(92%

vs.

46%,p

=0.003)

�Trends

suggestsurvivo

rsmoresatisfiedwith

acad

emicperforman

ce(71%

vs.5

3%,p

=0.076)

andless

satisfiedwith

friend

satschoo

l(76%

vs.

91%)c

ompa

redto

peers

Smallsam

plesiz

e,strong

matched

peer

compa

rison

grou

p,clearr

eported

finding

sand

analysis

approp

riate

fors

mall

sample.

4x

(Contin

ued)


S580 Lown et al.

SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Yagci-K

üpeli,

2013

Edu

catio

nal

achievem

ent,

employ

ment,

smok

ing,

marita

l,an

dinsurance

statuses

inlong

-term

survivorso

fchild

hood

maligna

ntsolid

tumors[88]

Cross-sectio

nal

survey-based

CCSin

remiss

ion

for3

+years,

(n=

201,

medianageat

diagno

sis10

(0-19),m

edian

currenta

ge23

(18-39);

compa

redwith

popu

latio

nno

rms

�56%

and23%

ofsurvivors

completed

high

scho

olan

dcollege,respectively,37%

unem

ploy

ed,2

6%liv

ing

independ

ently,3

0%marrie

d,8%

with

child

ren

�College

educationless

common

insurvivorso

fCNStumors

�Su

rvivorslesslikelyto

bemarrie

d,morelik

elyto

beun

employ

edthan

popu

latio

nno

rms

(p<

0.001)

Mod

eratesamplesiz

e,samplefrom

singlecenter;

popu

latio

nno

rmsw

ere

used

forc

ompa

rison

,da

tacollectionan

dan

alysisap

prop

riate,

repo

rtingcomprehensiv

e.Use

ofpo

pulatio

nno

rms

streng

then

rigor,b

utdemog

raph

icor

other

diffe

rences

betw

een

popu

latio

nan

dCCS

cann

otbe

addressed

whenda

taisno

tmerged.

4x

Yallo

p,2013,

Self-reported

psycho

social

wellbeing

ofad

olescent

child

hood

cancer

survivors[89]

Case-control,

survey

New

Zealand

natio

nal

registry

and

popu

latio

nhealth

coho

rtstud

ies

[Correction

addedafter

onlin

epu

blication

on15

Janu

ary

2016.Y

allop

2013

was

originally

misidentified

asan

Australian

stud

y.]

N=

170CCS

(meanageat

diagno

sis5.6

years,mean

currenta

ge15.3),historical

controls

(n=

9107)

�CCSpsycho

socialscores

mostly

norm

al(normal

rang

erepo

rted

for:

wellbeing

(89%

),an

xiety

(93%

),depressio

n(94%

),em

otiona

ldiffi

culties

(82%

)�

Survivorsn

omorelik

elyto

have

abno

rmalou

tcom

esthan

peers,an

dless

likely

torepo

rtab

norm

alpsycho

logicalw

ellbeing

(OR

0.44,p

=0.003).

�CNStumor,increased

age

atdiagno

sis,a

ndlower

socioecono

micstatus

all

associated

with

greater

degree

ofchalleng

eswith

insurvivor

popu

latio

n

mod

eratesamplesiz

e,da

tacollectionan

dan

alysis

approp

riate,reportin

gcomprehensiv

e.

4x

(Contin

ued)



SUPPLEMENTA

LTA

BLEII.(C

ontin

ued)

Stan

dard

Autho

rDesign

Sample

Finding

sStud

yRigor

Levelof

evidence

1a1b

1c2

Yi,2014,

Perceived

long

-term

and

physicalhealth

prob

lemsa

fter

cancer:

adolescent

and

youn

gad

ult

survivorso

fchild

hood

cancer

inKorea

[90]

Cross-sectio

nal

survey

Recruite

dfrom

websites

and

advo

cacy

grou

ps

Koreanad

olescent

survivorso

fchild

hood

cancer

(n=

225,

diagno

sedprior

toage19

years,

currenta

ge15–29years)

�73%

ofsurvivorsr

eport

chronichealth

prob

lems

includ

ingchronicfatig

ue(36%

)and

learning

/mem

oryprob

lems(26%)

�Su

rvivorsr

eportin

gfatig

uealso

repo

rted

lower

physicalan

dem

otiona

lqu

ality

oflifescores.

�Greater

numbers

ofhealth

prob

lemsw

ere

independ

ently

associated

with

lower

QoL

scores.

Mod

eratesamplesiz

e,no

controls,

data

collection

approp

riate

tostud

ymetho

d;ap

prop

riate

analysis;

evidence

deriv

edfrom

high

quality

coho

rtstud

ies;repo

rting

comprehensiv

e,clearly

describ

ed;issuesw

ithfollo

w-upor

miss

ingda

taclearly

describ

ed

6x

Yi,2014,

Postcancer

experie

nces

ofchild

hood

cancer

survivors:ho

wis po

sttrau

matic

stress

relatedto

posttrau

matic

grow

th?[9

1]

Cross-sectio

nal

survey-based

N=

225Korean

adolescent

CCS

(diagn

osed

priortoage19

years,current

age15–29

years)

�Meanpo

st-traum

atic

grow

thscores

increase

with

each

increasedyear

incurrentp

atient-age

(beta

=0.41,p

<0.001).

�Low

erpo

st-traum

atic

grow

thassociated

with

increasedtim

esin

cediagno

sis(beta

=−0

.42,

p<

0.001)

andincreased

post-traum

aticstress

(beta

=−0

.18,

p<

0.01).

Mod

eratesamplesiz

e,da

tacollectionan

dan

alysis

approp

riate,reportin

gcomprehensiv

e.

6x

Zad

a,2013

Prevalence

ofneuro-

behavioral,

social,a

ndem

otiona

ldy

sfun

ctionin

patie

ntstreated

forc

hildho

odcran

ioph

aryn

-giom

a:a

system

atic

literature

review

[92]

System

atic

Review

11stud

ies

review

ed.

Stud

ies

describ

edpsycho

social

outcom

esam

ongpa

tients

with

pediatric

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Abbreviations:InScientificr

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emia;A

ML

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leuk

emia;A

YA=

adolescent

youn

gad

ults;B

F=

benefit

finding

;CCS

=child

hood

cancer

survivor;C

CSS

=child

hood

cancer

sur-

vivo

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y;CES-DC

=center

forepidem

iologicalstudies-depressionscaleforchild

ren;

CI=

confi

denceinterval;C

NS

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ervo

ussystem

;EoL

=endof

life;ES

=eff

ectsize;

FTBI=

fractio

natedtotalb

odyirr

adiatio

n;HADS

=The

HospitalA

nxiety

andDepressionScale;HRQoL

=health

relatedqu

ality

oflife;HSC

T=

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atop

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celltran

splan-

tatio

n;LT

FU

=long

term

follo

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ompo

nent;M

INI

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tiona

lpsychiatric

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CCN

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lCom

prehensiv

eCan

cerNetwork;

OR

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dsratio

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=pediatric

braintumor

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CP

=prim

arycare

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PCS

=ph

ysicalcompo

nent;P

PI=

perceivedpo

sitiveim

pact;P

TG=

posttrau

maticgrow

th;

PTSD

=po

sttrau

matic

stress

disorder;P

TSS

=po

sttrau

matic

stress

symptom

s;QOL

=qu

ality

oflife;

SCP

=specialty

care

prov

ider;S

I=

suicideideatio

n;SS

=social

supp

ort;

TBI=

totalb

odyirr

adiatio

n;YA

=yo

ungad

ult

#.The

columns

titledStan

dard

indicatestheartic

lesthat

wereused

toform

ulateeach

stan

dard.S

omeartic

lespertainedto

morethan

onestan

dard.S

tand

ard1a

isabbreviatedQoL

,Stan

dard

1bisMH

(mentalh

ealth

),Stan

dard

1cisRHB(risk

yhealth

behavior)a

ndStan

dard

2refers

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sitionto

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arean

dlong

-term

follo

w-upcare.

Levelso

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quates

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Qua

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tyou

arer

eviewingan

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thes

tudy

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leaser

efer

tothed

ocum

ent“

Types

ofstudiesandlevelo

fevidence”foramapping

ofhowlevelo

fevidence

equatesto

atype

ofstudyperformed.Inthelastcolumnplaceacorrespo

ndingnu

mber(1-7)

tothetype

ofstud

yreview

ed.

1=

System

aticreview

ormeta-an

alysisof

controlledstud

ies,or

evidence-based

clinicalpractic

egu

idelines;

2=

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alexperim

entalstudies

(RCT);

3=

Qua

si-experim

entalstudies

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omized);

4=

Non

-exp

erim

entalstudies

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rt);

5=

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aticreview

sofdescrip

tiveor

qualita

tivestud

y;6

=Individu

aldescrip

tiveor

qualita

tivestud

y;7

=Opinion

sofrespectedau

thorities

andexpertcommittees.



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