Download - A Systematic Review of Internet-based Self-Management Interventions for Youth with Health Conditions
A Systematic Review of Internet-based Self-Management Interventionsfor Youth with Health Conditions
Jennifer Stinson,1,3,5 RN, PHD, CPNP, Rita Wilson,2 RN, BSCN, MEd, MN, Navreet Gill,3 RN, BSCN,
Janet Yamada,3,4 RN, MSC, and Jessica Holt,5 BHSC
1Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, 2Ryerson University, 3Child Health Evaluative
Sciences, 4Centre for Nursing and Research Institute, and 5Department of Anesthesia and Pain Medicine,
The Hospital for Sick Children (SickKids)
Objective Critically appraise research evidence on effectiveness of internet self-management interventions on
health outcomes in youth with health conditions. Methods Published studies of internet interventions in
youth with health conditions were evaluated. Electronic searches were conducted in EBM Reviews-Cochrane
Central Register of Controlled Trials, Medline, EMBASE, CINAHL and PsychINFO. Two reviewers indepen-
dently selected articles for review and assessed methodological quality. Of 29 published articles on internet
interventions; only nine met the inclusion criteria and were included in analysis. Results While outcomes
varied greatly between studies, symptoms improved in internet interventions compared to control conditions
in seven of nine studies. There was conflicting evidence regarding disease-specific knowledge and quality of
life, and evidence was limited regarding decreases in health care utilization. Conclusions There are the
beginnings of an evidence base that self-management interventions delivered via the internet improve
selected outcomes in certain childhood illnesses.
Key words adolescent; child; chronic illness; internet; self-management.
It is estimated that 15–20% of children and adolescents
have significant ongoing health care needs related to a
subacute or chronic (lasting more than 3 months) health
condition (Newacheck et al., 1998). Chronic illness in
childhood can negatively impact all aspects of quality of
life (QOL) (Wallander & Varni, 1998; Yeo & Sawyer,
2005). Disease course can be unpredictable and children
commonly experience a myriad of symptoms that may
restrict physical and social interactions. Disease manage-
ment is often complex, involving diverse and multiple
therapies and requires constant monitoring. Older
school-aged children and adolescents are expected to
assume greater responsibility for disease management
than when they were younger due to their growing inde-
pendence and autonomy (Sawyer & Aroni, 2005).
However, adherence to disease management activities is
less than optimal (Fiese & Everhart, 2006; Yeo &
Sawyer, 2005). Poor adherence and inappropriate self-
management behaviors may reduce the potential benefits
of treatment. Furthermore, the vast majority of adolescents
do not receive comprehensive disease education linked
with self-management therapy due to (a) difficulty acces-
sing these services (e.g., long-wait times), (b) limited avail-
ability of trained professionals (e.g., psychologists)
especially in rural areas, and (c) costs (e.g., time off
work) associated with these therapies (Barlow & Ellard,
2004). Enhanced disease awareness and greater self-man-
agement may prevent or diminish illness exacerbation and
associated adverse health outcomes.
Self management can be defined as ‘‘the individual’s
ability to manage the symptoms, treatment, physical and
psychological consequences and life style changes inherent
in living with a chronic illness’’ (Barlow, Wright, Sheasby,
Turner, & Hainsworth, 2002). Self-management inter-
ventions typically encompass information-based material
and cognitive and/or behavioral strategies designed to
increase participants’ knowledge, self-efficacy and use of
self-management behaviors (Barlow et al., 2002; Sawyer &
All correspondence concerning this article should be addressed to Jennifer Stinson, Child Health Evaluative Sciences,Research Institute, SickKids, 555 University Avenue, Toronto, Ontario, M5G 1X8 Canada.E-mail: [email protected].
Journal of Pediatric Psychology 34(5) pp. 495–510, 2009
doi:10.1093/jpepsy/jsn115
Advance Access publication November 23, 2008
Journal of Pediatric Psychology vol. 34 no. 5 � The Author 2008. Published by Oxford University Press on behalf of the Society of Pediatric Psychology.All rights reserved. For permissions, please e-mail: [email protected]
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Aroni, 2005). Studies in both adult (Barlow et al., 2002;
Krishna, Balas, Spencer, Griffin, & Boren, 1997; Marks &
Allegrante, 2005; Murray, Burns, See, Lai, & Nazareth,
2005), and pediatric chronic illness (Barlow & Ellard,
2004; Elgar & McGrath, 2003; Last, Stam, Onland-van
Nieuwenhuizen, & Grootenhuis, 2007) have shown that
comprehensive interactive interventions that augment
medical treatments with self-management lead to better
health outcomes and improved QOL than care that is
strictly medically focused. Self-management interventions
are meant to augment and not replace the information and
support provided by health care professionals.
e-Health technologies offer an innovative approach to
improving the health service delivery and acceptability
of self-management interventions for youth with health
conditions. Murray and colleagues (2005) conducted a
Cochrane review of Interactive Health Communication
Applications (IHCA), which are computer-based interven-
tions that encompass health information plus at least one
of the following: social support, decision-making support,
and/or behavior change support. The most common mode
of delivering IHCAs is the internet; however, they can also
take the form of CD-ROMs, telehealth, personal digital
assistants, or computer games. Internet interventions are
treatments based on effective face-to-face interventions
(e.g., cognitive–behavioral therapies) that are operationa-
lized and transformed for delivery via the internet with
the goal of symptom improvement. Usually they are
highly structured, self-guided or partly self-guided (i.e.,
use of therapist or health coach), tailored to the user’s
needs, and are interactive. Interactivity is enhanced by
graphics, animations, audio and video clips, as well as
interactive and continuous self-monitoring (diaries), infor-
mation exchange (chat rooms), follow-up and feedback
(e.g., decision-making support through emails)
(Ritterband et al., 2003b).
The literature on internet interventions is rapidly
growing with studies on the feasibility and utility, as well
as some evidence of their efficacy and effectiveness in
improving symptom management (Cuijpers, van Straten,
& Andersson, 2008; Murray et al., 2005; Wantland,
Portillo, Holzemer, Slaughter, & McGhee, 2004). Murray
and colleagues (2005) in their Cochrane review of IHCAs
found they had largely positive effects on end-users in
terms of being more knowledgeable and feeling more
socially supported and that they may improve behavioral
and clinical outcomes as well as self-efficacy compared to
non-users. However, they were not able to determine their
effect on emotional and economic outcomes (Murray et al.,
2005). While the internet has emerged as one of this age
group’s main health information sources (Gray, Klein,
Noyce, Sesselberg, & Cantrill, 2005), few self-administered
multimedia internet programs for youth with health con-
ditions have been developed and validated compared to
those that exist for adults (Murray et al., 2005).
This article is a report of a systematic review on
internet-based interventions to promote self-management
in youth with health conditions. More specifically, in
this article we will: (a) describe the internet programs,
(b) describe study designs and evaluation methods,
(c) summarize their findings in terms of efficacy and effec-
tiveness of the internet interventions, (d) determine their
methodological quality, and (e) recommend future direc-
tion in the development and testing of internet-based
interventions.
MethodsData Sources
Electronic searches were conducted by a Library
Information Specialist (CN) familiar with the field. The
EBM Reviews—Cochrane Central Register of Controlled
Trials (First Quarter 2008), Medline (1950–January
Week 5, 2008), EMBASE (1980–January Week 5, 2008),
CINAHL (1982–December 2007), and PsychINFO (1967–
January Week 5, 2008) were searched. Subject headings
and MeSH terms included ‘‘chronic illness,’’ ‘‘chronic
mental illness,’’ ‘‘computer assisted instruction,’’ ‘‘elec-
tronic communication,’’ ‘‘computer software,’’ ‘‘internet,’’
and ‘‘web-based.’’ Other keywords such as ‘‘self-care
skills,’’ ‘‘health education,’’ ‘‘health knowledge,’’ ‘‘health
behavior,’’ ‘‘disease management,’’ and ‘‘self-help techni-
ques’’ were used to search for the ideal publication type.
We also included a broad list of common pediatric chronic
illnesses as search engines rarely index papers using gen-
eric terms such as chronic condition or disability. All
search titles and abstracts were independently rated for
relevance by two reviewers (J.S., R.W.). There was 100%
agreement on the selected review articles. Reference lists
from all identified appropriate papers and review papers
were examined and then hand searched for additional
relevant studies. No attempt was made to locate unpub-
lished material or contact researchers for unpublished
studies (e.g., dissertations or conference proceeding
abstracts).
Study Selection
To be eligible, articles had to meet the following criteria:
(1) The articles had been published in a peer-reviewed
journal during the past 15 years (1993–2008).
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(2) The intervention targeted school aged children
(6–12 years) and/or adolescents (13–18 years) with
subacute or chronic health conditions.
(3) The study evaluated an internet-based or enabled
self-management intervention. We excluded studies
that involved other forms of IHCAs including hand-
held computers, video or telehealth programs,
CD-ROMs, and video games as it may be difficult to
compare outcomes across these different modalities
and they vary in their degree of interactivity.
(4) The evaluation examined outcomes based on the
potential benefits of internet-based IHCAs includ-
ing: effects on patients in terms of knowledge,
social support, self-efficacy, emotions and health
behaviors; health outcomes; QOL; and resource
utilization (Murray et al., 2005).
(5) The study was a randomized controlled trial (RCT),
quasi-randomized trial, before-and-after design or
feasibility RCT study. Given the dearth of research
in this area, we broadened the typical inclusion
criteria for systematic reviews beyond RCTs to avoid
missing important or significant data that would
inform the development of this rapidly expanding
field of clinical research.
(6) The article was published in English due to addi-
tional costs related to translation.
Review Process
Two of the authors (J.S., R.W.) examined each computer
search to identify potentially eligible articles using the
inclusion criteria outlined above. They based their initial
judgment on titles and abstracts; subsequently, all articles
meeting the criteria were reviewed and eligibility was deter-
mined by consensus of all authors.
Data Extraction
A systematic approach to data extraction was used to pro-
duce a descriptive summary of participants, interventions
and study findings (see Tables I and II). The first reviewer
(R.W.) independently extracted the year of publication,
journal of publication, study participants, study focus
(e.g., type of internet intervention) and main results from
each study. Detailed data on the intervention (e.g., treat-
ment fidelity) and control groups were extracted as well as
whether a theory or conceptual framework was used to
guide the development and evaluation of the intervention.
Summaries of the main results regarding effects on self-
management outcomes were based on the text in the ori-
ginal manuscript, and focused on quantitative summaries
when available. A second reviewer (J.S.) checked the data
extraction. When data were missing from a study, no
attempt was made to contact authors for additional infor-
mation and we limited our review to the material included
in the peer-reviewed articles.
Methodology Quality
There are few validated tools available to rate the metho-
dological quality of RCTs, especially non-pharmacological
trials. We chose to use the CONSORT (Consolidated
Standards of Reporting Trials) checklist which has recently
been extended for trials of non-pharmacological treatments
(Boutron, Moher, Altman, Schulz, & Ravaud, 2008a,b).
The CONSORT statement was developed to improve the
quality of reporting of clinical trials (Moher, Schulz, &
Altman, 2001) and has more recently been used to rate
the methodological quality of randomized controlled trials
(Stinson, McGrath, & Yamada, 2003). A copy of the check-
list can be found at http://www.consort-statement.org/.
The checklist has 23-items and we arbitrarily (23items/3)
assigned a score of <8 as poor quality, 9–16 as fair, and a
score of >17 indicating good methodological quality. Two
reviewers independently assessed the methodological qual-
ity of each study using this quality assessment measure
(J.S., J.H.). All papers were blinded to the names of the
authors, institutions and journals. There was 91% agree-
ment between the two reviewers. Any disagreements in
ratings were resolved by consensus.
Data Synthesis
We initially attempted to report on effects in terms of
standardized mean difference (SMD) and confidence inter-
vals. However, given the heterogeneity of outcomes mea-
sures used across the studies, the author’s main qualitative
conclusions were reported instead.
Results
A total of 806 articles were identified from the electronic
searches. One hundred and seven articles were removed
after accounting for duplicates, leaving 699 articles for
further consideration. Of these, 673 articles were removed
as they were general or review articles or other non-internet
based IHCA interventions (5¼CD-ROMs, 7¼ gaming,
2¼ telehealth for symptom monitoring, and 1¼ chat
room for social support). From the 29 remaining inter-
net-based studies, a further 11 were excluded as they
were not targeting the population of interest, 1 internet
intervention provided only social support, and 8 were
excluded for design reasons leaving 9 studies (7 RCTs,
1 pilot RCT, and 1 quasi-experimental study) for
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Tab
leI.
Sam
ple
,M
eth
od
san
dR
esu
lts
for
Inte
rnet
Inte
rven
tio
ns
Refe
ren
ces,
Co
un
try
Part
icip
an
ts
(nu
mb
er,
sex,
age
gro
up
,
recr
uitm
en
t)
Health
con
ditio
n
Stu
dy
desi
gn
Inte
rven
tio
n
(N)
Co
mp
ari
son
Gro
up
(N)
Meth
od
olo
gic
al
qu
alit
y
ratin
ga
Tim
ing
of
ou
tco
me
ass
ess
men
t
Ou
tco
mes
measu
red
Eff
ect
b
Dro
po
uts
(%)
(1)
Ch
anet
al.
(2007),
Ch
ina
120
you
th
F¼
45;
M¼
75
6–1
7ye
ars
Com
mu
nit
y
Per
sist
ent
asth
ma
RC
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-hom
eIn
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et-
bas
edte
lem
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ine
syst
emfo
rsy
mp
tom
mon
itor
ing,
edu
cati
on
and
case
man
agem
ent
(th
ree
virt
ual
and
thre
ecl
inic
visi
ts)
(60)
Tra
dit
ion
alof
fice
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bas
edin
-per
son
edu
-
cati
onan
dca
sem
an-
agem
ent
(6cl
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visi
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(60)
14
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6
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and
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wee
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s
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and
McG
rath
(2006),
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47
you
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pro
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(25)
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(22)
15
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dat
1c
and
3d
mon
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ttre
atm
ent
Pai
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QO
L
þe
0
28
(3)
Jan
etal
.
(2007),
USA
164
child
ren
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Clin
ical
Per
sist
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elfo
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revi
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d
dat
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and
PE
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Tra
dit
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alas
thm
a
edu
cati
on(v
erbal
and
wri
tten
boo
klet
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di-
vid
ual
ized
asth
ma
self-
man
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acti
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pla
nan
das
thm
a
sym
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md
iary
(76)
16
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elin
ean
d
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sym
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dp
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17
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(4)
Jose
ph
et
al.
(2007),
USA
314
you
th
F¼
199;
M¼
115
5–1
9ye
ars
Sch
ool
Mild
,p
er-
sist
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asth
ma
sym
pto
ms
wit
h/w
ith
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out
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al
dia
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RC
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ased
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tailo
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pro
gram
and
pro
acti
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llow
-up
by
hea
lth
care
refe
rral
coor
din
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(162)
Reg
ula
ted
bro
wsi
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of
gen
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asth
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web
site
sco
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trol
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by
limit
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secu
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tim
elim
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ute
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dse
lf-i
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lth
care
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12
mon
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17
(5)
Kri
shn
aet
al.
(2003),
USA
228
child
ren
and
par
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F¼
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148
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aR
CT
Inte
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Mul
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Pro
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Ast
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and
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Dis
ease
outc
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(dec
reas
ed
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asth
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Hea
lth
serv
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li-
zati
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þ 0 þ þ
10
(6)
Rit
terb
and
etal
.
(2003
a ),
USA
24
child
ren
and
par
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F¼
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19
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Com
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En
cop
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sPilo
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Inte
rnet
-bas
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enh
ance
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trai
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ing
pro
gram
that
inco
rpor
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beh
av-
iora
lth
erap
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d
med
ical
man
agem
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(12)
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alca
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(12)
10
Pre
trea
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and
3w
eeks
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elh
abit
s(#
acci
-
den
ts)
Kn
owle
dge
Bow
elsp
ecific
pro
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ms
þ 0 0
0
(7)
Ru
nge
,
Lec
hel
er,
Hor
ns,
Tew
s,an
d
Sch
aefe
r
(2006),
Ger
man
y
438
you
th
F¼
5;
M¼
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6ye
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Clin
ical
and
com
mu
nit
y
Ast
hm
aQ
uas
i-
exp
eri-
men
tal
(non
-
stra
ti-
fied
)
Tw
oin
terv
enti
on
grou
ps:
(1)
Inte
rnet
-bas
ed
asth
ma
edu
cati
on
pro
gram
(IE
P)
in
add
itio
nto
SPM
P
(146)
(2)
SPM
P—
seri
esof
5
stan
dar
diz
eded
uca
-
tion
alse
ssio
ns
(127)
Usu
alca
re(w
ait-
list
con
trol
grou
pre
ceiv
ed
inte
rven
tion
at6
mon
ths)
(85)
12
Bas
elin
ean
d6
and
12
mon
ths
Cos
t-ben
efit
anal
ysis
Red
uct
ion
inas
thm
a-
rela
ted
emer
gen
cies
Sch
ool
abse
nte
eism
Res
cue
med
icat
ion
use
Lu
ng
fun
ctio
n
Hea
lth
care
reso
urc
e
uti
lizat
ion
QO
L
þf
þf
þf
þf
0 þf
þg
18%
inIE
P
þSP
MP
63%
in
SPM
P
Con
tin
ued
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Tab
leI.
Co
ntin
ued
Refe
ren
ces,
Co
un
try
Part
icip
an
ts
(nu
mb
er,
sex,
age
gro
up
,
recr
uitm
en
t)
Health
con
ditio
n
Stu
dy
desi
gn
Inte
rven
tio
n
(N)
Co
mp
ari
son
Gro
up
(N)
Meth
od
olo
gic
al
qu
alit
y
ratin
ga
Tim
ing
of
ou
tco
me
ass
ess
men
t
Ou
tco
mes
measu
red
Eff
ect
b
Dro
po
uts
(%)
(8)
Wad
e,
Car
ey,
and
Wol
fe
(2006),
USA
40
you
th
and
fam
ily
F¼
17;
M¼
23
5–1
6ye
ars
Clin
ical
Mod
erat
eor
seve
retr
au-
mat
icbra
in
inju
ry
RC
TIn
-hom
eIn
tern
et-
bas
edco
gnit
ive–
beh
a-
vior
alfa
mily
trea
tmen
t
pro
gram
wit
hw
eekl
y/
biw
eekl
ysy
nch
ron
ous
vid
eoco
nfe
ren
cin
gan
d
usu
alth
erap
y
(20)
Inte
rnet
reso
urc
es
com
par
ison
(IR
C)
grou
pre
ceiv
ing
usu
al
psy
chos
ocia
lca
re
(24)
15
Bas
elin
ean
d
follo
w-u
p
(tim
elin
en
ot
spec
ifie
d)
Ch
ildbeh
avio
rp
ro-
ble
ms
Soci
alco
mp
eten
ce
Self-m
anag
emen
t/
com
plia
nce
0 0 þ
0
(9)
Will
iam
son
etal
.
(2006),
USA
40
adol
esce
nt–
par
ent
dya
ds
F¼
40
11–1
5ye
ars
NR
Obes
ity
BM
I>85th
per
cen
tile
h
BM
I>30
i
RC
TIn
-hom
eIn
tern
et-
bas
edin
tera
ctiv
elif
e-
styl
ebeh
avio
rm
odifi-
cati
onp
rogr
am
(NR
)
Pas
sive
non
-in
tera
c-
tive
Inte
rnet
hea
lth
edu
cati
onp
rogr
am
(lin
ksto
hea
lth
ylif
e-
styl
ew
ebsi
tes)þ
face
-
to-f
ace
cou
nse
llin
g
sess
ion
s(N
R)
11
Bas
elin
ean
d
mon
ths
6,
12,
18
and
24
du
rin
gth
e
inte
rven
tion
Bod
yfa
t
Bod
yw
eigh
t
þj
þk
17.5
Not
e.F
,fe
mal
ean
dM
,m
ale.
PE
F,
pea
kex
pir
ator
yfl
ow;
LF
T,
lun
gfu
nct
ion
test
;E
D,
emer
gen
cyd
epar
tmen
t;IE
P,
inte
rnet
edu
cati
onp
rogr
am;
SPM
P,
stan
dar
diz
edp
atie
nt
man
agem
ent
pro
gram
;N
R,
not
rep
orte
d.
a CO
NSO
RT
Ch
eckl
ist
use
dto
rate
met
hod
olog
ical
qu
alit
y.bþ
,E
ffec
tre
fers
toa
stat
isti
cally
sign
ific
ant
chan
gein
the
outc
omes
mea
sure
dbet
wee
ngr
oup
s.b0
,N
osi
gnif
ican
td
iffe
ren
cein
outc
omes
mea
sure
dbet
wee
ngr
oup
s.c T
ime
2(T
2).
dT
ime
3(T
3).
e Dif
fere
nce
was
stat
isti
cally
sign
ific
ant
atT
2an
dT
3.
f Dif
fere
nce
was
stat
isti
cally
sign
ific
ant
for
IEP
com
par
edto
con
trol
and
SPM
Pgr
oup
s.g IE
Pan
dSP
MP
com
par
edto
con
trol
grou
p.
hM
easu
reof
obes
ity
use
dfo
rad
oles
cen
ts.
i Mea
sure
ofob
esit
yu
sed
for
par
ents
.j D
iffe
ren
cew
ason
lyst
atis
tica
llysi
gnif
ican
tat
T2
for
adol
esce
nts
.kD
iffe
ren
cew
ason
lyst
atis
tica
llysi
gnif
ican
tat
T2
for
par
ents
.
500 Stinson, Wilson, Gill, Yamada, and Holt
at Ball State U
niversity on Novem
ber 20, 2014http://jpepsy.oxfordjournals.org/
Dow
nloaded from
Tab
leII
.C
hara
cteri
stic
so
fIn
tern
et-
base
dIn
terv
en
tio
ns
Less
on
s/se
ssio
ns
Art
icle
Co
nte
nt
of
inte
rven
tio
n(p
lus
inte
rac-
tive
featu
res)
Co
nta
ctU
sage
Treatm
en
tin
tegri
tyN
um
ber
Len
gth
Du
ratio
n
(1)
Ch
an
etal
.(2
007)
�W
eb-b
ased
inte
ract
ive
asth
ma
edu
-
cati
on
�D
isea
sem
anag
emen
t
�A
sth
ma
in-h
ome
mon
itor
ing
usi
ng
dig
ital
vid
eoca
mer
ato
cap
ture
pea
k
flow
met
eran
din
hal
edm
edic
atio
n
tech
niq
ue
atp
resc
hed
ule
dti
mes
;
vid
eos
sen
tto
case
man
ager
wh
o
pro
vid
edfe
edbac
kon
tech
niq
ue
�W
eb-b
ased
dai
lyas
thm
ad
iary
Reg
ula
rw
eekl
y
con
tact
wit
hca
se
man
ager
2/w
eek
for
6w
eeks
then
wee
kly
Sign
ific
antl
y
grea
ter
dia
ry
adh
eren
cein
inte
rnet
grou
p
(p<
.01;
how
ever
no
dia
ryen
trie
s
wer
ere
cord
edfo
r
60–8
0%
ofd
ays.
Ele
ctro
nic
Pea
k
flow
was
only
one-
fou
rth
of
that
requ
ired
by
pro
toco
l
�N
Ra
for
rese
arch
team
(fou
rca
sem
an-
ager
s)
�C
ust
omiz
edp
arti
ci-
pan
ted
uca
tion
and
mon
itor
ing
bas
edon
a
clin
ical
pat
hw
ay
6 3in
-per
son
visi
tsan
d
3vi
rtu
al
visi
ts
NR
a52
wee
ks
(2)
Hic
ks
etal
.(2
006)
�Sy
mp
tom
trac
kin
g,id
enti
fyin
gtr
ig-
gers
,an
dov
ervi
ewof
pai
nre
du
ctio
n
met
hod
s
�In
form
atio
non
hea
dac
hes
,go
alse
t-
tin
g,d
eep
bre
ath
ing
�Ph
ysic
alp
ain
man
agem
ent
met
h-
ods
�R
elax
atio
nst
rate
gies
(plu
sp
erso
na-
lized
rela
xati
onta
pe)
�C
ogn
itiv
est
rate
gies
(ch
angi
ng
neg
a-
tive
thin
kin
g)in
clu
din
gth
ough
t
jou
rnal
�H
ealt
hy
lifes
tyle
choi
ces
�D
evel
opin
gp
lan
tom
anag
ep
ain
,
reco
gniz
ep
rogr
ess,
and
man
agin
gth
e
pro
gram
�T
wo
chap
ters
for
par
ents
onp
ro-
mot
ing
hea
lth
ybeh
avio
r
�Pap
eror
onlin
ep
ain
dia
ry(p
arti
ci-
pan
tch
oice
)
Em
ail
con
tact
(5
tim
es)þ
tele
ph
one
con
tact
(3ti
mes
)
NR
�N
Ra
for
rese
arch
team
�St
and
ard
ized
web
-
bas
edm
ater
ial
�St
and
ard
ize
sch
edu
le
for
emai
l/p
hon
e
con
tact
7O
ne
chap
-
ter
per
wee
k
7w
eeks
Con
tin
ued
Systematic Review of Internet Interventions for Youth with Health Conditions 501
at Ball State U
niversity on Novem
ber 20, 2014http://jpepsy.oxfordjournals.org/
Dow
nloaded from
Tab
leII
.C
on
tin
ued
Less
on
s/se
ssio
ns
Art
icle
Co
nte
nt
of
inte
rven
tio
n(p
lus
inte
rac-
tive
featu
res)
Co
nta
ctU
sage
Treatm
en
tin
tegri
tyN
um
ber
Len
gth
Du
ratio
n
(3)
Jan
etal
.
(2007)
Bas
icin
form
atio
non
asth
ma
self-
man
agem
ent
�A
ctio
np
lan
�E
lect
ron
icsy
mp
tom
dia
ry
�R
etri
eval
anal
ysis
syst
emto
revi
ew
accu
mu
late
dd
ata
onsy
mp
tom
san
d
PE
RF
vari
abili
ty
MD
feed
bac
k
rega
rdin
gch
ange
s
inm
edic
atio
ns
via
emai
lor
tele
ph
one
bas
edon
sym
p-
tom
sas
nee
ded
Dia
ryad
her
ence
was
sign
ific
antl
y
hig
her
inin
tern
et
grou
pbu
t
dec
lined
over
tim
e
inbot
hgr
oup
s
�N
Ra
for
rese
arch
team
/cas
em
anag
er
NR
aN
Ra
12
wee
ks
(4)
Jose
ph
et
al.
(2007)
�A
sth
ma
pat
hop
hys
iolo
gy
�T
rigg
erav
oid
ance
�Sy
mp
tom
man
agem
ent
(med
ica-
tion
s,co
ntr
olle
rm
edic
atio
nad
her
-
ence
,co
rrec
tu
seof
MD
I,et
c)
�Sm
okin
gce
ssat
ion
/red
uct
ion
�M
essa
ges
voic
edov
erto
acco
mm
o-
dat
elo
wlit
erac
y
Pro
acti
veco
nta
ct
by
refe
rral
coor
di-
nat
oras
nee
ded
Inte
rnet
stu
den
ts
mor
elik
ely
to
com
ple
teal
lfo
ur
sess
ion
sco
mp
ared
toco
ntr
olgr
oup
�N
Ra
for
rese
arch
team
4E
stim
ated
tim
eto
com
ple
te
each
ses-
sion
was
30
min
ute
s
180
day
s
pos
t
bas
elin
e
(5)
Kri
shn
a
etal
.(2
003)
�B
asic
pat
hop
hys
iolo
gyof
asth
ma
�E
nvi
ron
men
tal
trig
gers
�Sy
mp
tom
man
agem
ent
wit
hqu
ick-
relie
fan
dco
ntr
olm
edic
atio
ns
�St
rate
gies
toco
ntr
olan
dm
anag
e-
men
tas
thm
a
�Se
lf-m
anag
emen
tst
rate
gies
(dec
i-
sion
-mak
ing
skill
s,sy
mp
tom
reco
g-
nit
ion
,co
mm
un
icat
ing
wit
hm
edic
al
team
)
�A
nim
ated
and
real
-life
vign
ette
s
�Q
uiz
zes
aten
dof
each
sess
ion
NR
40–1
00%
ofp
ar-
ents
com
ple
ted
thre
ese
ssio
ns;
wh
ile7-
to17-y
ear
old
sw
ho
com
-
ple
ted
visi
t3
had
mas
tere
d48–
100%
ofm
ater
ial
and
com
ple
ted
58%
orm
ore
of
the
pro
gram
�N
Ra
for
rese
arch
team
44
En
tire
pro
-
gram
can
be
com
-
ple
ted
in
80
min
-
ute
s;
vari
ed
bas
edon
du
rati
onof
clin
icvi
sit.
12
mon
ths
(6)
Rit
terb
a-
nd
etal
.
(2003
a )
�T
hre
eco
rem
odu
les
(an
atom
y/p
hy-
siol
ogy,
med
icat
ion
,an
dbeh
avio
ral
trea
tmen
t)
�27
trea
tmen
t/ed
uca
tion
alm
odu
les
(e.g
.,fe
ars
ofto
ilet
use
;so
cial
isol
a-
tion
;ad
min
iste
rin
g,ad
just
ing,
and
tap
erin
gla
xati
ves;
die
t;h
ygie
ne;
and
pre
ven
tin
gre
lap
se)
�F
ollo
w-u
pm
odu
le
�A
ud
iofo
rte
xtp
rese
nte
d
�Pri
nta
ble
sum
mar
ies
aten
dof
each
sect
ion
and
qu
izze
s
�A
nim
atio
ns
Con
tact
ed3
tim
es
toan
swer
qu
es-
tion
sre
gard
ing
use
ofsi
te
Site
acce
ssed
aver
-
age
of14
tim
es
du
rin
g3
wee
k
per
iod
Tw
o
mod
ule
sw
ere
nev
erac
cess
edby
par
tici
pan
ts
�N
Ra
for
rese
arch
team
�B
oth
grou
ps
wer
e
calle
dat
regu
lar
inte
rval
s
3p
lus
add
i-
tion
alm
odu
les
bas
edon
ind
i-
vid
ual
nee
ds
60–9
0m
in
toco
m-
ple
teco
re
mod
ule
s;
5–1
0m
in
for
trea
t-
men
tm
od-
ule
s;
follo
w-u
p
sess
ion
s
com
ple
ted
1w
eek
afte
rco
re
mod
ule
s
3w
eeks
502 Stinson, Wilson, Gill, Yamada, and Holt
at Ball State U
niversity on Novem
ber 20, 2014http://jpepsy.oxfordjournals.org/
Dow
nloaded from
(7)
Ru
nge
etal
.(2
006)
SPM
P
�Pro
per
use
ofd
iffe
ren
tin
hal
er
dev
ices
,cl
assi
fica
tion
ofre
lieve
ran
d
con
trol
ler
med
icat
ion
s,av
oid
ance
of
asth
ma
trig
gers
,lim
itat
ion
ofal
lerg
en
exp
osu
re,
pea
kflow
mea
suri
ng,
and
its
inte
rpre
tati
onIE
P
�A
dd
itio
nal
asth
ma
mod
ule
wit
h
qu
iz
�In
tera
ctiv
ead
ven
ture
gam
e
�SP
MP
mat
eria
l
�M
edic
alm
odu
lein
clu
din
gin
div
i-
du
alm
edic
atio
np
lan
,sc
hed
ule
d
chat
sw
ith
asth
ma
exp
ert,
and
on-l
ine
pea
kflow
pro
toco
l
�C
hat
room
Abili
tyto
com
mu
-
nic
ate
wit
hh
ealt
h
care
pro
vid
ers
via
emai
l(n
ot
sch
edu
led
)
Log
ged
onan
aver
age
of2
h/
mon
th.
Pea
k
flow
pro
toco
l,ch
at
room
,an
dad
ven
-
ture
gam
ew
ere
mos
tw
idel
yu
sed
�N
Ra
for
rese
arch
team
�N
Ra
for
thos
e
adm
inis
teri
ng
SPM
P
SPM
P—
5IE
P—
1
add
itio
nal
mod
ule
SMPM
—2
hou
rs
IEP—
NR
a
NR
a
(8)
Wad
e
etal
.(2
006)
�O
verv
iew
and
goal
iden
tifica
tion
�Im
por
tan
ceof
atti
tud
e
�Pro
ble
mso
lvin
g
�C
ogn
itiv
ean
dbeh
avio
rch
ange
s
�C
omm
un
icat
ion
�C
risi
sm
anag
emen
t
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nn
ing
for
the
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re
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ress
and
ange
rm
anag
emen
t
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orki
ng
wit
hth
esc
hoo
l
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blin
gco
nce
rns
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nm
anag
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t
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arit
alco
mm
un
icat
ion
�V
ideo
clip
s,p
ract
ice
exer
cise
s
�C
hat
room
�vi
deo
con
fere
nci
ng
Reg
ula
rly
sch
ed-
ule
dvi
deo
con
fer-
ence
sw
ith
ther
apis
tev
ery
1–
2w
eeks
Tot
aln
um
ber
of
vid
eoco
nfe
ren
ces
ran
ged
from
0-1
2
(M¼
9.5
0,
SD¼
2.1
9).
Th
e
tota
ln
um
ber
of
sess
ion
sco
m-
ple
ted
ran
ged
from
1–2
4w
ith
fam
ilies
rece
ivin
g
onav
erag
etw
o
sup
ple
men
tal
sess
ion
s.
�E
xten
sive
trai
nin
gof
inte
rvie
wer
san
d
ther
apis
t
�In
terv
enti
onad
mi-
nis
tere
dby
sin
gle
ther
apis
t
�D
etai
led
trea
tmen
t
man
ual
�E
nd
ofse
ssio
n
chec
klis
ts
�W
eekl
ysu
per
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on
ofth
erap
ist
14
NR
aN
Ra
(9)
Will
iam
s-
onet
al.
(2006)
�N
utr
itio
ned
uca
tion
�C
oun
selli
ng
�Lifes
tyle
and
ph
ysic
alac
tivi
ty
�W
eigh
tan
dp
hys
ical
acti
vity
grap
hs
�T
elev
isio
nse
lf-m
onit
orin
g
�Pro
ble
mso
lvin
g
�B
ehav
iora
lco
ntr
acti
ng
�Lin
ksto
Afr
ican
-Am
eric
anh
ealt
h
web
site
s
�Lin
ksto
wom
en’s
hea
lth
web
site
s
�Q
uiz
zes,
goal
sett
ing,
and
food
mon
itor
ing
wit
hfe
edbac
kvi
aem
ail
from
cou
nse
llor
Inte
rnet
cou
nse
l-
ling
via
wee
kly
emai
lsþ
fou
rfa
ce-
to-f
ace
cou
nse
llin
g
sess
ion
s
Web
site
use
dec
reas
edov
er
tim
ew
ith
sign
ifi-
can
td
ecre
ase
in
year
2co
mp
ared
toye
ar1
�N
Ra
for
rese
arch
team
52
NR
a24
mon
ths
a NR
,n
otre
por
ted
.
Systematic Review of Internet Interventions for Youth with Health Conditions 503
at Ball State U
niversity on Novem
ber 20, 2014http://jpepsy.oxfordjournals.org/
Dow
nloaded from
assessment and methodological quality rating as outlined
in Fig. 1. A list of the excluded articles is available from the
first author on request.
Characteristics of Study Participants
Summary data for each study and details of internet inter-
ventions are summarized in Tables I and II, respectively.
Studies included children with asthma, recurrent pain,
encopresis, traumatic brain injury and obesity. The
number of participants ranged from 24 to 438 and
involved a total of 1415 children, adolescents and adults.
Four of the studies specifically targeted youth (Studies: 1,
3, 4, 7); while five interventions targeted youth and their
parents (Studies: 2, 5, 6, 8, 9), with one of those interven-
tions being geared to the entire family including siblings
(Study: 8). One study on weight loss specifically targeted
female adolescents (Study: 9). Two of the studies targeted
African-American participants (Studies: 4, 9), two studies
were comprised of mainly Caucasians (Studies: 5, 8), one
study was comprised of Taiwanese participants (Study: 3),
and the remaining studies did not describe the partici-
pants’ ethnicity (Studies: 1, 2, 6, 7).
Characteristics of Interventions
There was marked variability both in the content and pro-
cedural aspects of the interventions (i.e., therapist involve-
ment) as shown in Table II. The description of the
interventions in the publications themselves was extremely
varied with respect to details of both content and proce-
dure. The interventions also varied in length, duration, and
the number of sessions. The shortest intervention lasted
3 weeks and the longest was 2 years, with a mean of 36.53
weeks and a standard deviation of 35.93 weeks. Six were
solely in-home interventions (Studies: 2, 3, 6–9), while one
was a combination of clinic and home-based sessions
(Study: 1). In the remaining two studies, participants
accessed the intervention at school in one study (Study:
4) and during regular clinic visits in the other (Study: 5).
Participants in the control groups in three studies were
provided with internet restricted access to general illness
specific information in addition to standard medical care
(Studies: 4, 8, 9); while two were waitlist control groups
(Studies: 2, 7), three provided standard education and
medical care (Studies: 1, 3, 5), and one was a usual med-
ical care group (Study: 6).
All of the interventions were psycho-educational in
nature, involving combinations of information and skills
training modules targeting improved health outcomes.
Most skills training embraced self-management skills direc-
ted to a variety of issues, including symptom management
(recognizing symptoms, how to use medications, avoiding
triggers; Studies: 1–9), cognitive restructuring to reduce
pain and/or stress (Studies: 2, 5, 6, 8), and promote pro-
blem solving/decision-making and healthy lifestyle choices
(Studies: 2, 5, 6, 8, 9) as outlined in Table II. Specific
therapeutic techniques included cognitive (e.g., changing
negative thoughts, positive self-talk) and/or behavioral
therapy (e.g., modeling, reinforcement, and self-mastery)
and educational modules specific to the illness concerned.
Three of the interventions were described as behavioral
therapies (Studies: 5, 6, 9), two as Cognitive–Behavioral
Therapy (CBT) (Studies: 2, 8), while four interventions did
not describe the techniques used in detail (Studies: 1, 3, 4,
7). Parents were included in five of the nine studies as
active participants (Studies: 2, 5, 6, 8, 9). One study had
specific modules for parents (Study: 2) and in two studies
children and parents were asked to complete the sessions
together (Studies: 6, 8). Six of the nine studies included
electronic symptom monitoring (pain diary, asthma
attacks, weight monitoring) as part of the intervention
(Studies 1–3, 5, 7, 9). Two studies included chat rooms
as part of the intervention (Studies: 7, 8).
One of the benefits of internet-based interventions is
that they allow for standardization of the treatment.
However, the majority of these interventions also involved
the role of a health coach or therapist to help tailor the
information and cognitive–behavioral strategies to partici-
pant’s individual needs. Very few studies reported the mea-
sures that were taken to ensure treatment integrity
especially regarding therapist contact. Of those that did,
only one elaborated on the training that the interviewers
29 Internet-based articlesretrieved and assessed
for relevance
699 Articles assessedfor relevance
806 Articles identifiedand screened
107 Duplicates
673 Excluded based oninclusion/exclusion criteria
20 Internet-based articles excluded based on:Intervention• Primary prevention = 8 • Social support without education = 1 Population• Acute hospitalized children = 2 • Parents = 1 Design• Pilot RCTs of interventions included in review = 2 • RCTs (same subjects; Williamson et al., 2006) = 2 • Qualitative study = 1 • Usability testing = 2 • Pilot non-RCT = 1
9 Unique studies onInternet-based
self-management studies
Figure 1. Study selection.
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and therapist received to ensure implementation fidelity
(Study: 8). Three studies described the use of a standar-
dized protocol that was followed by the participants in the
intervention and control groups (Studies: 1, 2, 6), while
one study incorporated the use of specific treatment integ-
rity tests such as checklists or periodic observation by a
third party (Study: 8).
Outcomes of Studies
The studies included in this review evaluated a variety of
outcome measures as shown in Table I. Improving health
outcomes in terms of symptom management or disease
control were investigated in all of the studies using a
wide variety of outcomes (e.g., symptom free days, use of
medications, days of school missed, and activity restric-
tions). Seven of the nine studies demonstrated significant
improvements in health outcomes compared to the control
groups (Studies: 2–7, 9). Four of the nine studies exam-
ined the effects of treatment on disease related knowledge
(Studies: 1, 3, 5, 6); knowledge significantly increased
compared to the control group in two studies on asthma
(Studies: 3, 5) but not in a third asthma study (Study: 1)
and the encopresis study (Study: 6). Six of the nine studies
investigated the effect of the treatment on the participants’
QOL (Studies 1–4, 5, 7); two found a significant difference
from the control group (Studies: 3, 7).
Four of the nine studies, all involving asthma partici-
pants, reported on the use of health care resources
(Studies: 1, 4, 5, 7); two studies found significant
decreases in utilization of health care resources (i.e., emer-
gency room visits, physician consultations) (Studies: 5,7),
one found significant decreases in emergency room visits,
but not hospitalizations (Study: 4), and one found no sig-
nificant decreases in the utilization of services (Study: 1)
compared to control groups. None of the studies measured
outcomes on self-efficacy, social support, or emotional
well-being. Finally, timing of outcome measurement
varied greatly; four studies measured outcomes pre- and
post-intervention (Studies: 2, 3, 6, 8), four studies mea-
sured outcomes up to 1-year (Studies: 1, 4, 5, 7) and one
study assessed durability of treatment outcomes at regular
6-month intervals for 2 years (Study: 9). Interestingly, this
study revealed that the significant reductions in weight loss
at 6-months postintervention were not maintained over the
remaining 2-year follow-up period.
Four studies investigated the cost-effectiveness of the
intervention (Studies: 2, 3, 5, 7). However, none evaluated
cost-effectiveness from the participants’ perspective (i.e.,
travel time and/or time off work). Instead, cost-effectiveness
was appraised from the perspectives of labor costs,
resource utilization, health insurance, and societal costs.
In one study, the intervention was estimated to be 5.5
times more cost-effective than the traditional office-based
program with respect to resource utilization, specifically the
therapist’s time (Study: 2). Krishna and colleagues (2003)
found a reduction in emergency room visits resulting from
the intervention that translated into a savings of approxi-
mately $907.10 per child as opposed to the group receiving
solely traditional patient education who only realized a sav-
ings of $291.40 per child. One study looking at costs of
program delivery found an estimated labor cost of $6.66
per treatment student for a referral co-ordinator as the
students were provided access to computers in the
school setting (Study: 4). The study whose main focus
was the economic implications of an internet-based edu-
cation program (IEP), found that the cost-benefit ratio
improved from 0.55 to 0.79 when adding an IEP to a tradi-
tional education program (Study: 7). Runge and colleagues
(2006) also observed incremental morbidity cost savings,
with cost-benefit ratios of 1.07 and 1.42 for patients with
moderate or severe asthma, for standard education and
IEP, respectively. Although cost savings did not exceed
program costs in the entire study population, the signifi-
cant decline in morbidity costs indicates that IEPs may
yield further cost savings in the long term (Study: 7).
All of the studies reported on the feasibility of the
interventions. Most often, feasibility was discussed in
terms of treatment efficiency, access and compliance.
Two studies reported that the intervention might be
more suitable for certain patient populations (Studies: 8,
9). For example, an internet-based cognitive–behavioral
program was more effective for older children and those
of lower socio-economic status (SES) compared to younger
children and those with higher SES in children with trau-
matic brain injury (Study: 8). In another study, Williamson
et al. (2006) argued that internet interventions may over-
come obstacles to traditional face-to-face interventions and
be considered more feasible for African-Americans. Of the
six studies requiring participants to use a home computer,
three included internet access as one of their inclusion
criteria (Studies: 1–3), and three provided participants
with computers and free internet access (Studies: 6, 8,
9). The remaining studies required them to be able to
access it either at home, school or in a clinic setting
(Studies: 4, 5, 7). Compliance varied greatly across the
studies. One of three studies including an electronic
diary component showed very poor compliance in both
the intervention and control group with no diary entry
on 60% of study days (Study: 1). Furthermore, the two
studies having a duration of at least 1 year showed a steady
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decline in website usage throughout the study period
(Studies: 1, 9).
Five of the nine studies reported on the usability of the
intervention (Studies: 2, 3, 5, 6, 8). In one study, more
than 80% of the children rated the website and videocon-
ferencing as easy to use; however, 25% perceived that the
website was not as easy to use when compared to other
sites used for health information (Study: 8). Hicks and
colleagues (2006) found that participants identified the
treatment website as ‘‘one of the well-designed aspects of
the program’’ (p. 732). However, with respect to helpful-
ness, the therapist’s telephone calls were endorsed more
frequently than the website. One study measured the par-
ticipant’s attitude toward computers (i.e. enjoyment, satis-
faction and comfort with computers) at baseline; which
was found to positively correlate with greater website use
for parents in the behavioral group (Study: 9). Finally, few
studies reported on the usage of the internet interventions
(e.g., session time and site visits).
Methodologic Quality of Studies
Using the 23-item CONSORT statement checklist for non-
pharmacological RCTs (Boutron et al., 2008a), the studies
methodological quality ranged from a score of 10–16 out
of 23 with mean of 13.77 and standard deviation of 2.22 as
outlined in Table I. Given that all of the studies fell within
the fair quality range it was difficult to determine whether
outcomes differed by methodological quality scores.
However, it should be noted that the pilot RCT (Study:
6) and the quasi-experimental study design (Study: 7)
had lower quality scores than six of the seven RCTs. Two
of the nine studies provided precise details on: (a) inter-
ventions intended for each group, and how and when they
were administered; (b) how the interventions were stan-
dardized; (c) details on different components of the inter-
vention and how they were tailored to individual patients;
and (d) how adherence of care providers (health coach,
therapist) with protocol was assessed or enhanced (Stu-
dies: 3, 8). The majority of papers lacked details regarding
randomization procedures (Studies: 2, 3, 5, 6, 7, 9). As
with many psychological interventions, it usually is not
possible for researchers and participants to be blind to
the intervention a participant is receiving. Therefore,
there is a potential risk of reporting or scoring bias that
might mask a real intervention effect. Bias could be mini-
mized by the use of procedures such as blinding of coders
or using web-administered questionnaires as was done in
two of the studies (Studies: 5, 8). Five of the nine studies
did not report sample size calculations (Studies: 2, 4, 6–8).
However, five of the nine studies used an intention-to-treat
analysis that would indicate how the overall result was
affected by participant attrition (Studies: 1, 2, 4, 7, 8).
Finally, while monitoring for adverse effects in psychologi-
cal trials is not common practice, one of the nine studies
mentioned the method used to assess for adverse effects in
intervention and control groups (Study: 4).
Discussion
This study sought to critically appraise the research evi-
dence on the effectiveness of self-management interven-
tions delivered by the internet for youth with health
conditions. In the past 5 years, nine studies using rigorous
study designs (eight RCTs and one quasi-experimental)
have examined the effectiveness of the internet as a
medium for delivering self-management interventions to
youth with health conditions. Most of these were pub-
lished in the past 2 years and it can be expected that the
number of trials will continue to grow exponentially.
Overall, there is consistent evidence that they lead to
improvements in symptom or disease control in four of
the five health conditions. However, there is limited evi-
dence regarding their impact on health care utilization
(some evidence with asthma), knowledge and quality of
life outcomes. We were unable to determine the effective-
ness of internet interventions on self-efficacy, social sup-
port or emotional well-being.
Previous systematic reviews and meta-analyses of psy-
chological interventions for children with chronic illnesses
have found moderate-to-strong evidence for their effective-
ness (Bauman, Drotar, Leventhal, Perrin, & Pless, 1997;
Beale, 2006; Kibby, Tyc, & Mulhern, 1998). However, our
results are best interpreted in the context of findings from
other internet-based psychological intervention studies.
Several recent systematic reviews have found that internet
interventions have been effective in improving symptoms
in adults with mental and other chronic health conditions
(Cuijpers et al., 2008; Griffiths & Christensen, 2006;
Murray et al., 2005; Spek et al., 2007; Wantland et al.,
2004); however, the effects appear to differ across target
conditions (Cuijpers et al., 2008). For example, Cuijper
and colleagues (2008) found that internet interventions
targeting pain and headaches were comparable to face-to-
face treatments; however, they found that the effectiveness
differed across other target populations such as those with
chronic health conditions. In contrast to these findings, we
found improvements in symptoms in four of the five health
conditions. Finally, the studies included in our review did
not allow us to draw definite conclusions about whether
self-management interventions delivered through the
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internet are as effective as face-to-face therapies as most of
the studies used usual care or wait-list control comparison
groups.
Wantland and colleagues (2004) conducted a sys-
tematic review and meta-analysis of 22 studies that com-
pared web-based to non-web-based self-management
interventions in adults. They found substantial evidence
that use of internet interventions improved behavioral
change outcomes in terms of increased exercise time,
increased knowledge of nutritional status, increased
knowledge of asthma treatment, increased participation
in healthcare, slower health decline, improved body
shape perception, and 18-month weight loss maintenance
compared to non-web-based interventions across a wide
variety of chronic conditions. Those interventions that
directed the participant to relevant, individually tailored
materials reported longer internet usage (session time
and site visits). Additionally, those sites that incorporated
the use of a chat room demonstrated increased social sup-
port scores. Unfortunately, few studies in our review
reported on internet usage or utilized chat rooms. In keep-
ing with our review and others (Murray et al., 2005), they
were not able to determine the durability of treatment
effects or cost-effectiveness of internet therapies.
The internet interventions in our review varied in the
degree of interactivity that was provided through anima-
tions or games, video and audio clips, use of chat rooms
for social support, and feedback and decision-making sup-
port from a therapist. All of these additional features that
enhance interactivity may influence outcomes, dropout
rates, as well as compliance with and use of the internet
site (Wantland et al., 2004). Poor adherence is a significant
issue for most health interventions, including internet
interventions. Therefore, it would be important to identify
characteristics of the interventions as well as end-users
(cognitive development in children and youth) that affect
adherence to internet interventions. Nijland and colleagues
(Nijland, van Gemert-Pijnen, Boer, Steehouder, & Seydel,
2008) recently examined patients’ and caregivers’ percep-
tions of the user-friendliness of internet applications for
supporting self-care. They found that inadequate naviga-
tion structures, search options, and lack of feedback fea-
tures hindered the usability of the applications.
Furthermore, participants felt the information was not suf-
ficiently tailored to meet their individual information needs
and that the language/readability level of the information
provided appeared to be a barrier to using self-care advice.
In addition to conducting usability testing studies,
researchers should use the tools offered by this medium
to track the use of an internet site (visits to pages, dwell
time). Utilization patterns would help to determine what
dose and which components of the interventions are most
effective.
The main aim of these internet interventions was to
produce cognitive and behavior change that leads to symp-
tom improvement (Ritterband et al., 2006). A theory-driven
approach would further our understanding of how inter-
net interventions work. Theory should be used to guide
the development of these interventions as well as study
design and outcome measurement (Sidani & Braden,
1997). Models specific to internet interventions are
needed as there are obvious differences in treatment deliv-
ery from traditional interventions (Ritterband et al., 2006).
Murray and colleagues (2005) have recently developed
a pathway for change whereby internet self-management
interventions are hypothesized to work by combining
information with peer, decision-making, and behavioral
change supports to allow internalization and interpretation
of the information by the user. A combination of enhanced
self-efficacy with motivation and knowledge enables users
to change their health behaviors, leading to changes in
clinical outcomes. The use of a theoretical framework
would help standardize the essential ingredients of self-
management programs (i.e., information, skills training,
social support), interactive features (e.g., feedback), and
use of therapist or health coach as well as help to standar-
dize outcomes for internet interventions (Clarke, 2007).
Future Directions for Research
The present study also revealed areas for future research on
internet self-management interventions. First, more high
quality studies with adequate samples sizes, using both
clinical and community samples of children with a wide
range of health conditions are needed to confirm these
findings and to elucidate the best type and way to deliver
internet interventions, and to conduct cost-benefit analyses
comparing them to standard approaches (e.g., face-to-face,
group formats). Second, due to the cost of developing
internet interventions, it would be beneficial to develop
consensus on the steps to take in the development and
testing of internet interventions to ensure their usability
and feasibility. These steps are crucial to determine that
participants can be identified, recruited and maintained in
the project, that the intervention can be delivered consis-
tently, and that the end-users are satisfied with and recep-
tive to these modes of intervention delivery. Third, greater
uniformity of assessment intervals across studies is recom-
mended in order to more effectively evaluate the long-term
effects of these interventions. Finally, more research is
needed to elucidate the mechanism of action of internet
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self-management and how it differs from traditional meth-
ods of delivering self-management interventions.
Limitations
The present study has several limitations. First, because
few internet interventions targeting self-management in
youth with health conditions have been conducted over
the past 15 years, our findings are based on a very small
number of studies and five illnesses. Future independent
replications will be required to establish whether internet
treatment approaches are reliably efficacious for treating a
wide variety of acute and chronic illnesses. Due to the
limited data reported in the studies included in this
review, we were only able to provide a qualitative synthesis.
Furthermore, conducting systematic and meta-analytic
reviews on internet interventions is challenging due to
the wide variability in the treatment programs, as well as
differences in nature of health conditions and their treat-
ments. In addition, several factors may limit the general-
izability including limiting studies to English and that the
studies found were primarily conducted in North America.
Conclusions
The internet shows great promise as a mode of delivering
self-management interventions for youth with health con-
ditions. In the past, psychological interventions aimed at
promoting self-management in traditional formats (group
or individual formats) have been found to be effective.
Evidence from this review lends support to the delivery
of these types of interventions using the internet to
improve symptoms in youth with health conditions.
Further research is necessary to increase the scope of
these findings using rigorous study designs so we can har-
ness the full potential of the internet as a medium for
delivering self-management interventions.
Acknowledgements
We acknowledge Cheri Nickel, BSW, MLS for assistance
with the electronic searches. We thank the reviewers for
their helpful comments on earlier versions of the
manuscript.
Funding
Canadian Institute for Health Research (CIHR) Post-
Doctoral Fellowship (to J.S.); CIHR Doctoral Fellowship
(to J.Y.); Summer Research Studentship through the
Department of Anesthesia and Pain Medicine (to J.H.).
Conflicts of interest: None declared.
Received March 6, 2008; revisions received October 9,
2008; accepted October 14, 2008
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