health-related quality of life (hrqol). working group brad zebrack, phd, msw, mph, co-chair...

Health-Related Quality of Life (HRQOL)

Working GroupBrad Zebrack, PhD, MSW, MPH, Co-Chair• University of Michigan School of Social

Work

Barbara Jones, PhD, MSW• University of Texas School of Social Work

Anne Kirchhoff, PhD, MPH• Huntsman Cancer Institute, University of

Utah

Erin Kent, PhD• NCI

Kelly Trevino, PhD• Rowan University

Lynne Wagner, PhD, Co-Chair• Northwestern University, Robert H. Lurie

Comprehensive Cancer Center

Sheila Santacroce, PhD, RN, APRN• UNC School of Nursing and Lineberger

Comprehensive Cancer Center

Nina Kadan-Lottick, MD, MSPH• Yale University School of Medicine

Ashley Wilder Smith, PhD, MPH• NCI

Sarah R. Arvey, PhD• LIVESTRONG Foundation

Objectives and Strategy

• To identify gaps and recommendations via a systematic review of HRQOL literature (since 2000)

• Define search terms ‘Adolescent,’ ‘Young adult,’ + (PHYSICAL, PSYCHOLOGICAL, SOCIAL, SPIRITUAL/EXISTENTIAL, MEASUREMENT, METHODOLOGICAL)– Google Scholar, PsychInfo, CINHAL

• Define parameters for inclusion– Inclusion (Liberal): aged 15-39 years; younger and older also

included; patients, survivors, survivors of childhood cancer– Inclusion (Conservative): diagnosis at age 15-39 years– Exclusion: sample includes subjects aged <12/13 years or >40

years

Results of Literature ReviewRecords identified through

database search

Records/Titles screened (Liberal inclusion)

Records excluded: Not HRQOL, not 15-39 years

Records/Titles screened(Conservative inclusion)

Records excluded: Not AYA

PhysicalPsych, Social,

Spiritual/ExistentialMeasurement

& Methodology Total

Liberal inclusion 184 253 68 505Conservative inclusion 26 105 23 154

HRQOL ContentPhysical Psychological Social Spiritual/Existential

FunctionPhysical activitySymptom burden• Fatigue• PainComorbiditiesHealth behaviorsLate effects

Physical Well-Being• AYAs report:

– Poorer physical functioning than healthy peers or siblings (CCSS)– Better physical functioning compared to older survivors

• YAs reported greater symptom burden compared to older adults with the same cancer type– Breast: Moderate/severe drowsiness, hair loss, sx interference in

relationships– Colorectal: Moderate/severe pain, fatigue, nausea, distress, drowsiness,

shortness of breath, rash, and greater interference in general activity, mood, work, relationships and life enjoyment

• Diagnosis, type of treatment, age at treatment completion and time since treatment completion not correlated with HRQL

• AYAs on treatment have greater symptom burden than those post-treatment, though fatigue persists for years

• Fatigue and pain negatively affect HRQL

• AYAs report higher rate of comorbidities (24%) than non-cancer controls (14%), including cardiovascular disease, hypertension, asthma, and disability

Physical Well-Being

• AYAs report levels of physical activity comparable to controls, below recommended guidelines

• High proportion of AYAs report being overweight (20%) or obese (15%) with higher rate of obesity among AYAs (31%) than controls (27%)

• Rates of cigarette use among AYAs estimated at 16% and 26%– One study estimated use higher than non-cancer controls (18%)– One study found higher rate among age-related peers (25%)

and lower rate among older cancer survivors (4%)

Physical Well-Being

HRQOL GapsPhysical Psychological Social Spiritual/Existential


GAPSOther symptoms (e.g., sleep, neuropathy, ADLs)Late effectsBiopsychosocial risk factors



Psychiatric symptomsBenefit-finding, growthCopingDevelopmental tasks• Identity

development• Sexuality• Peer relations

GAPSOther symptoms (e.g., sleep, neuropathy, ADLs)Late effectsRisk factors

Psychological Well-Being

• AYAs report higher prevalence of psychiatric symptoms (compared to normative data, non-cancer controls, older cancer patients)– 6%-41% distress– Study findings mixed with regard to identifiable risk

factors• age, time since diagnosis, education, employment status,

relationship status, cancer type/severity, treatment type, symptom burden, needs of daily living, fertility concerns, information needs, insurance status, health system characteristics


• Coping strategies employed– Acceptance, problem-solving– Support seeking– Emotional expression (through writing, blogs)– Seeking normalcy– Physical activity

• Benefit finding, meaning-making associated with positive outcomes

• Evidence of low levels of receipt/use of psychosocial care


• Existing interventions: promote achievement of developmental tasks– Identity development, sexuality, peer relationships

• Intervention modalities reported– Expressive therapy through arts, music, video-

making, writing, physical activity






GAPSRisk/resilience factors





NormalcySocial networksStigmaWork/school and socioeconomic statusRelationships



Social Well-Being

• AYAs compare selves to peers– Fertility concerns compromise sense of normalcy

• Social networks– Friends help– …but offer few opportunities to ask questions,

receive information, process feelings, develop coping strategies

Social Well-Being

• Stigma and unfair treatment– From peers, employers, government agencies

• Challenges in returning to work/school

• Low SES contributes to poor HRQOL

• AYAs less likely to be married/partnered; more likely to divorce.








GAPSRisk/resilience factorsFamily distress/impactSexual functionBody image/appearanceFinancial well-beingEducation



Psychiatric symptomsBenefit-finding, growthDevelopmental tasks• Identity



UncertaintyHope and gratitude




Spiritual/Existential Well-Being

• Coping with Uncertainty

• Expressions of Hope and Gratitude









GAPSRisk/resilience factorsFamily distress/impactSexual functionBody image/appearance Financial well-beingEducation

GAPSSpiritualityReligiosity: Development of faith, practice

Methodology and Measurement

• Lower rates of AYA study participation and retention as compared to older survivors

• Recruitment strategies vary in effectiveness (as per response rate)– Clinic-based recruitment, mailings, social media, population-

based (SEER)– Online approaches and registries for study recruitment have

mixed results re study accrual

• Study retention increased with use of peer participants, collateral contacts, and parental awareness of participation


• Peer outreach (peer-to-peer recruitment) increased retention in health care

• Online technology effective for intervention delivery– Use of social media outlets (e.g., Facebook) for

collecting PROs

• Evidence of higher response bias in reporting inflated levels of socio-emotional functioning


• Few HRQOL-specific measures with reported psychometric data– Minneapolis-Manchester QOL– PedsQOL– Cancer Needs Questionnaire

• Few specific content areas covered by use of standardized measures– Fatigue, Pain, Sleep– Depression, Distress, Neurocognitive function

Summary HRQOL Content & GapsPhysical Psychological Social Spiritual/

ExistentialFunctionPhysical activitySymptom burden• Fatigue• PainComorbiditiesHealth behaviorsLate effects








GAPSSpiritualityReligiosity: Development of faith, practice

Recommendations• Rigorous designs

– Comparison groups, disease- and treatment-specific sub-groups– Longitudinal studies w/repeated measures -- Important given relatively rapid

psychosocial & cognitive development– Comparative effectiveness evaluations of non-traditional interventions (e.g.,

videogames, movies, creative arts, social networking) compared to conventional interventions (e.g., psychotherapy, support groups)

• Instrumentation– Deeper evaluation of function, performance, coverage of content, validity,

reliability– Use of standardized measures and – Biomarkers with established AYA reference ranges or community norms

• Health disparities– Identify disparities in symptom burden (physical and psychosocial), and access to

supportive care services• By AYA characteristics: race/ethnicity, age sub-group, SES, language

Recommendations

• Intervention studies – Reduce symptom burden– Promote positive adaptation and coping– Target self-efficacy/self-management (symptoms,

surveillance of late effects & 2nd malignancies)– Involve friends, family, peers– Better understanding of role and potential of

social networking/social media

health-related quality of life (hrqol). working group brad zebrack, phd, msw, mph, co-chair...

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