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PEC 5288 No. of Pages 17

Patient Education and Counseling xxx (2015) xxxxxx

Contents lists available at ScienceDirect

Patient Education and Counseling

journal homepage: www.elsevier.com/locate/pateducou

Review article

Exploring effectiveness and effective components of self-management

interventions for young people with chronic physical conditions: A
systematic review
Marjolijn I. Bala,b,* , Jane N.T. Sattoea,c , Pepijn D.D.M. Roelofsa , Roland Balc ,
AnneLoes van Staaa,c , Harald S. Miedemaa
a
Rotterdam University of Applied Sciences, Research Centre Innovations in Care, Rotterdam, The Netherlands
b
Erasmus University Medical Center, Department of Rehabilitation Medicine, Rotterdam, The Netherlands
c
Erasmus University Rotterdam, Institute of Health Policy & Management, Rotterdam, The Netherlands

A R T I C L E I N F O A B S T R A C T

Article history: Objective: To systematically explore the effectiveness and effective components of self-management
Received 13 October 2015 interventions.
Received in revised form 25 January 2016 Methods: Study selection criteria were: Original articles in English published between 2003 and 2015;
Accepted 23 February 2016
focusing on youth with chronic conditions; describing self-management interventions; with clear
outcome measures; using RCT design. The random effects analysis was applied in which standardized
Keywords: mean differences per study were calculated.
Systematic review
Results: 42 RCTs were included. Interventions focused on medical management, provided individually in
Self-care
Self-management
clinical settings or at home by mono-disciplinary teams showed a trend in improving adherence.
Chronic disease Interventions delivered individually at home by mono-disciplinary teams showed a trend in improving
Disabled persons dealing with a chronic condition.
Child Conclusions and practical implications: Adherence could be improved through interventions focused on
adolescent medical management, provided individually in a clinical or home setting by a mono-disciplinary team.
Young adult Interventions focused on dealing with a chronic condition might be provided individually, through
Program evaluation telemedicine programs facilitating peer-support. These intervention elements seemed effective
irrespective of diagnosis, and may therefore act as good starting points for further research into and
for improvement of self-management support for youth with chronic conditions in pediatric care. Results
underlined the need to systematically develop and evaluate self-management interventions, since this
may provide more evidence for effectiveness and effective intervention components.
2016 Elsevier Ireland Ltd. All rights reserved.

Contents

1. Introduction . . . . . . . . . . . . . . . . . . . ................. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
2. Methods . . . . . . . . . . . . . . . . . . . . . . ................. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
2.1. Study design . . . . . . . . . . . . . ................. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
2.2. Search strategy . . . . . . . . . . . ................. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
2.3. Inclusion criteria . . . . . . . . . . ................. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
2.4. Selection, quality assessment, and data extraction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
2.5. Analysis . . . . . . . . . . . . . . . . . ................. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
3. Results . . . . . . . . . . . . . . . . . . . . . . . ................. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
3.1. Paralell paper . . . . . . . . . . . . ................. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00

* Corresponding author at: Rotterdam University of Applied Sciences, Research

Center Innovations in Care, P.O. Box 25035, 3001 HA Rotterdam, The Netherlands.
E-mail addresses: [email protected] (M.I. Bal), [email protected] (J.N.T. Sattoe),
[email protected] (P.D.D.M. Roelofs), [email protected] (R. Bal), [email protected]
(A. van Staa), [email protected] (H.S. Miedema).

http://dx.doi.org/10.1016/j.pec.2016.02.012
0738-3991/ 2016 Elsevier Ireland Ltd. All rights reserved.

Please cite this article in press as: M.I. Bal, et al., Exploring effectiveness and effective components of self-management interventions for young
people with chronic physical conditions: A systematic review, Patient Educ Couns (2016), http://dx.doi.org/10.1016/j.pec.2016.02.012
G Model
PEC 5288 No. of Pages 17

2 M.I. Bal et al. / Patient Education and Counseling xxx (2015) xxxxxx

3.2. General study characteristics (n =42) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00

3.3. Intervention components (n = 42) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
3.4. Exploration of effectiveness and effective components of self-management interventions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
3.4.1. Outcome measure symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
3.4.2. Outcome measure disease knowledge . . . . . . . . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
3.4.3. Outcome measure adherence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
3.4.4. Outcome measure dealing with the chronic condition in daily life ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
3.4.5. Outcome measure psychological outcomes . . . . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
3.4.6. Outcome measure school attendance . . . . . . . . . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
3.4.7. Outcome measure quality of life . . . . . . . . . . . . . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
4. Discussion and conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
4.1. Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
4.1.1. Effectiveness of SMI . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
4.1.2. Effective components of SMI . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
4.1.3. Strengths limitations and other considerations . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
4.2. Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
4.3. Practical implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
Conict of interest . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
Funding . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ............ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 00

1. Introduction with chronic conditions, as they face comparable challenges and

similar adaptive tasks while growing up [22]. A non-categorical
Advancements in medical care result in increasing numbers of approach to self-management support may benet both health
young people with chronic conditions making the transition into service delivery and research [28]. First, because it could allow
adulthood [1,2]. This transition, which implies becoming an pediatric teams to learn from other specialist teams, for instance by
independent adult fullling different roles in society, requires using (partly) the same SMI. Second, it could stimulate the use of
complicated life changes [3,4]. For these young people the transition same outcomes measures, which could enhanced the evaluation of
may be more complicated, however, as they often lag behind in social effectiveness of these programs [28].
and emotional development compared to healthy peers [5,6]. In a parallel paper including SMI evaluation studies using all
Furthermore, they are expected to take over the task of medical kinds of study designs, a systematic overview of self-management
management from their parents, but this does not always come with support for youth with chronic conditions in general with respect
ease [7,8]. It seems crucial, therefore, to help them develop self- to content, formats, theories, and evaluated outcomes is provided
management skills in all life areas [911]. Barlow et al. dene self- [29]. This systematic overview showed that most interventions
management as the individuals ability to manage the symptoms were aimed at medical management, and that no theoretical base
and the consequences of living with a chronic condition, including was provided for most of the included interventions. Although a
treatment, physical, social, and lifestyle changes [12]. As such, self- variety of outcomes was evaluated, outcomes were conceptually
management and self-management support encompass three related to specic content [29]. No results about effectiveness of
elements: medical management (considering the treatment), role SMI were included in this overview. Therefore, in the current paper,
management (considering participation in society), and emotion we reviewed published randomized controlled trials (RCT) of these
management (considering emotional consequences of being ill) [13]. SMI elaborating on (a) evidence regarding effectiveness of SMI
This broad denition of self-management is widely used, as it ts focused on youth with chronic conditions; and (b) effective
with the World Health Organizations denition of health in terms of intervention components of these SMI, by employing a non-
physical, mental and social well-being [14]. categorical approach to chronic conditions. Such insights may
A range of interventions is available for healthcare providers to provide understanding of what elements of self-management
support young peoples self-management in chronic disease [9 support might be effective across a variety of chronic physical
11,15,16]. These interventions are developed for young people aged conditions, and hence may be valuable to further improve self-
between 7 and 25 years. The age of seven years is considered as a management support in health care.
developmentally appropriate age to start the development of
independence and young adults are still developing their full 2. Methods
potential [17,18,19]. Self-management interventions have been
reviewed in some studies [20,21], but solid evidence on effective- 2.1. Study design
ness of self-management interventions (SMI) for young people
with chronic conditions in general, i.e. irrespective of diagnosis, is We applied a systematic review methodology which Grant and
still lacking [2026]. Specically, Kirk et al. [21] restricted Booth dened as systematically searching for, appraising and
themselves to asthma, cystic brosis and diabetes, while Lindsay synthesizing research evidence, often adhering to guidelines for
et al. [20] restricted themselves to physical disabilities, excluding conducting a review [30]. Methodological characteristics accord-
people with somatic chronic conditions. Moreover, although Kirk ing to the Search, Appraisal, Synthesis and Analysis (SALSA)
et al. [21] reviewed effective components of SMI for young people framework are: exhaustive and comprehensive searching, quality
with asthma, cystic brosis and diabetes, insights into effective assessment, narrative synthesis with tabular accompaniment,
intervention components of self-management support for young results of uncertainty around ndings, recommendations for
people with a variety of chronic conditions are still lacking [20]. practice and future research [30]. This type of review allows for
Still, looking at self-management support through a non- exploration of effects and effective intervention components of
categorical approach is important [27]. Despite disease-specic self-management support. The PRISMA statement guided the
differences, there are many commonalities between young people review process [31].

Please cite this article in press as: M.I. Bal, et al., Exploring effectiveness and effective components of self-management interventions for young
people with chronic physical conditions: A systematic review, Patient Educ Couns (2016), http://dx.doi.org/10.1016/j.pec.2016.02.012
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2.2. Search strategy considered during the intervention; interventions theoretical

base, format, discipline, interventionist, element, setting, outcome
The search strategy employed variations and Boolean con- measures and study results [34]. Data was recorded on an
nections (AND, OR) of subject headings and keywords relating to electronic extraction form.
self-management, children and adolescents, chronic illness, and
intervention. For example, MESH terms (Medical Subject Head- 2.5. Analysis
ings) included: Self care, Self medication, Intervention
studies, Program evaluation, Chronic disease, Disabled per- The following seven categories of outcome measures were
son, Adolescence, Child. Key words included: self help inductively derived from the data: (1) symptoms; (2) disease
clinical effectiveness; evaluation; congenital disorder; knowledge; (3) adherence; (4) dealing with the chronic condition
handicapped child; youth; teenage. Relevant variations of (including self-efcacy, coping and problem-solving); (5) psycho-
search terms were derived from database thesauruses and relevant logical outcomes (including depression, stress, anxiety); (6) school
review articles. An information specialist helped dene the nal attendance; and (7) quality of life. The reviewers (MB, JS)
search strategy. Six databases were searched: Embase; Medline; independently clustered the specic study outcome measures
PsycINFO; Web-of-Science; CINAHL; and Cochrane. Two research- into these categories.
ers (MB; JS) completed the database searches by scrutinizing The overall quality of evidence for each outcome measure was
relevant reviews references for additional relevant publications. independently rated by two researchers (MB&JS) using the GRADE
approach, a method for rating the quality of evidence and grading
2.3. Inclusion criteria the strength of recommendations per particular outcome [35].
Basically, evidence of randomized controlled trials (RCTs) is rated
 Study design: studies using a randomized controlled study as high but may be modied downwards on the basis of ve
design. different criteria: (1) risk of bias: assessment of methodological
 Study types: original research articles in English language quality; (2) inconsistency: heterogeneity or variability in results
published from 2003 to April 2015, because the focus in across studies; (3) indirectness of evidence: indirect comparison of
literature on self-management rapidly increased since 2003 [32]. interventions within the studies; (4) imprecision of results: wide
 Interventions: studies focusing on the evaluation of SMI and condence intervals around the estimate of the effect; and (5)
describing the SMI or referring to previous description(s) of the likeliness of publication bias: underestimating or overestimating
intervention. of the effect due to the selective publication of studies [3640].
 Outcome measures: studies considering clearly dened outcome Problems on a criterion was dened as serious when 6080% of the
measures. studies showed limitations, and very serious when >80% of the
 Participants: studies focusing on young people aged 725 years studies showed limitations on the criterion. The quality of evidence
with somatic chronic conditions or physical disability. The age of per outcome measure (high) was single downgraded for serious
seven years is considered a developmentally appropriate age to study limitations to moderate quality of evidence, and double
start the development of independence [17]. As young adults are downgraded for very serious study limitations to low quality of
still developing their full potential, the age range was extended evidence.
from 18 to 25 years [18,19]. Analyses to explore the effectiveness and the effective
intervention components of self-management support were
Studies had to meet all inclusion criteria to be included for performed for each outcome measure separately. The random
further analysis. effects analysis was applied in which standardized mean differ-
ences per study were calculated [41]. In this way, we could
2.4. Selection, quality assessment, and data extraction compare effect sizes of statistically heterogeneous studies and
provide an overview of effects on an outcome measure measured
Retrieved records (n = 7505) identied in databases and with different measurement instruments. Pooled estimates were
relevant reviews reference lists were imported into Endnote not calculated, because interventions were clinically diverse, i.e.
X7.21. Two reviewers (MB, JS) independently categorized studies consisted of different intervention elements, and studies were
into: include, exclude or not clear based on title and abstract. statistically diverse, i.e. different instruments were used to
Thereafter, the reviewers discussed the studies for which evaluate the interventions. In addition, to evaluate the effective
inclusion/exclusion was unclear and aimed to reach consensus intervention components, we compared the effect sizes of included
on the decision. If doubt remained, a third reviewer was consulted studies that differed on particular intervention components. For
(PR). Full texts of all agreed-upon articles (n = 562) were retrieved. instance, effect sizes of individual intervention programs were
Then, the two reviewers independently decided on the inclusion of compared with effect sizes of group intervention programs.
articles based on the full text, resulting in 85 publications. For this Likewise, effect sizes of interventions focusing on different self-
paper we were interested in effects and effective intervention management domains, or provided by different disciplines,
components, in contrast to the parallel paper [29], and therefore interventionists, and in various settings were compared. We speak
selected studies with RCT design (n = 42) from the included of a trend in favor of, because we could not perform a meta-
publications. The selection process and reasons for exclusion are analysis (due to the heterogeneity in measurement instruments)
presented in Fig. 1. Three reviewers (MB, JS, PR) independently and thus cannot state whether an intervention or its components
assessed methodological quality of all included studies using the are indeed effective or not. We only described a pattern of effects
methodology checklists of the Scottish Intercollegiate Guidelines when at least three studies were included, and used the cut-off
Network (SIGN) for randomized controlled trials [33]. Methodo- point of two out of three studies (67%) as a minimum number of
logical quality was dened as high when at least eight out of ten studies indicating effects in the same direction. Otherwise, the
criteria were met; as moderate when from ve till eight were met; pattern was described as showing no clear effects. When drawing
and as low when fewer than ve criteria were met [33]. Any conclusions, we downgraded the level of evidence for those issues
discrepancies in assessment of methodological quality were where the number of available studies was low [38]. Individual
resolved by discussion. Two reviewers (MB, JS) extracted data studies that showed a signicant effect were weighted twice and
on study design; study sample; self-management domain individual studies that showed a trend (but not a signicant effect)

Please cite this article in press as: M.I. Bal, et al., Exploring effectiveness and effective components of self-management interventions for young
people with chronic physical conditions: A systematic review, Patient Educ Couns (2016), http://dx.doi.org/10.1016/j.pec.2016.02.012
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were weighted once. Review Manager version 5.1 software was cell disease (n = 2), or other diseases (e.g. spina bida,
used for the analyses. haemophilia and juvenile bromyalgia) (n = 9).
 Methodologicalquality: The methodological quality of 25 studies
3. Results was rated as moderate, of 11 studies as high and of 6 studies as
low.
3.1. Paralell paper

A detailed overview of the focus and content of the 3.3. Intervention components (n = 42)
interventions presented in the parallel paper, showed a variety
in the operationalization of self-management support [29]. Most Many interventions were solely aimed at medical management
SMI were aimed at medical management, neglecting psychosocial (61.9%). Medical management was either disease-specic or more
challenges. Although a variety of outcomes was evaluated, general. Disease-specic medical management refers to tasks or
outcomes were conceptually related to specic content [29]. In topics associated with or related to a specic diagnosis, e.g. self-
order to explore the effectiveness and effective components of SMI, monitoring of blood glucose values in diabetes. General medical
we selected the studies with RCT-design from the included studies management refers to health and healthcare related tasks
(n = 42). In the current paper results on effectiveness and effective irrespective of diagnosis. For instance, accessing healthcare, but
components of SMI are described. also child-parent sharing or teamwork related to medical
management tasks. One intervention considered only role
3.2. General study characteristics (n = 42) management (2.4%), referring to topics related to social participa-
tion, such as communicating, assertiveness and keeping up with
 Countries: Most, studies were performed in the USA (n = 27), peers. None of the interventions considered emotion management
followed by Australia (n = 3), Canada (n = 2), Taiwan (n = 2), the separately. Interventions considering emotion management could
Netherlands (n = 2), the United Kingdom (n = 2), China (n = 1), refer to young persons feelings and intrinsic characteristics. Topics
Germany (n = 1), and Jordan and Australia (n = 1). covered are stress-management and relaxation techniques. The
 Chronic conditions: Study participants were patients with other interventions addressed multiple domains, for example both
asthma (n = 16), diabetes (n = 6), cystic broses (n = 3), cancer on medical and role management (35.7%). Studies did not mention
(n = 2), human immunodeciency virus infection (n = 2), sickle a theoretical base for the intervention (64.3%), referred to learning

Fig. 1. Selection process.

Please cite this article in press as: M.I. Bal, et al., Exploring effectiveness and effective components of self-management interventions for young
people with chronic physical conditions: A systematic review, Patient Educ Couns (2016), http://dx.doi.org/10.1016/j.pec.2016.02.012
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theories like Banduras (cognitive) social learning theory (11,9%), 3.4.2. Outcome measure disease knowledge
cognitive behavioral theory (4,4%) or a combination of these (2,4%). Nineteen studies focused on disease knowledge as an outcome
Interventions were either applied at individual level (69.0%), at measure [42,43,45,47,48,5255,57,6163,66,71,73,76,78,82]. In
group level (23.8%) or both (7.1%). Most interventions were general, SMI showed a trend in favor of intervention. Specically,
provided by a mono-disciplinary team (70%). Interventions nine studies revealed a signicant effect in favor of intervention;
included education (88.1%), peer-support (23.8%), problem solving ve studies showed a trend in favor of intervention and ve studies
(23.8%), relaxation training (21.4%), cognitive restructuring (e.g. showed a trend in favor of the control condition. The quality of
cognitive behavioral therapy) (19.0%), or self-monitoring, (e.g. evidence was moderate (Table 1).
keeping a diary with blood glucose values) (19.0%). In general, Of all interventions that aims to improve disease knowledge,
neither the domain of self-management considered during interventions focused on medical management, or medical
interventions nor the other intervention elements were speci- management, emotional management and role management,
cally linked to certain theoretical frameworks. Intervention showed a trend in favor of intervention. The same pattern revealed
settings were inpatient or outpatient clinics (31.0%), home for interventions provided individually and interventions provided
(23.8%), online (14.3%), school (14.3%), home and clinic (7.1%), in a clinic or at home. Mono-disciplinary interventions showed a
camping sites (4.8%), or home and school (2.3%). Settings were not trend in favor of the control condition, but this was also the case for
exclusive for formats and elements of interventions. multi-disciplinary interventions (Fig. 3a and b).
A detailed description of study characteristics and intervention
components per study is presented in Appendix A. 3.4.3. Outcome measure adherence
Nine studies focused on adherence as an outcome measure
[45,53,54,61,67,68,78,82,83]. Overall, SMI showed a positive trend
3.4. Exploration of effectiveness and effective components of self- on adherence. Specically, four studies showed a signicant effect
management interventions in favor of intervention, ve other studies showed a positive
tendency. The quality of evidence was very low (Table 1).
3.4.1. Outcome measure symptoms Of all interventions that aims to improve adherence, inter-
Twenty-four studies focused on the severity of symptoms as an ventions focused on medical management showed a trend in favor
outcome measure [43,4951,54,56,5860,6367,70,72,74,7683]. of intervention. The same pattern held for interventions provided
In general, SMI showed a trend in favor of the control condition. individually and in a clinic or at home and interventions delivered
Specically, nine studies showed a trend in favor of intervention; mono-disciplinary (Fig. 4a and b).
twelve studies reported a trend in favor of the control condition;
and three studies showed a signicant effect in favor of the control 3.4.4. Outcome measure dealing with the chronic condition in daily life
condition. The quality of evidence was very low (Table 1). Eleven studies focused on dealing with the chronic condition in
Of all interventions that aims to reduce the severity of daily life as an outcome measure
symptoms, the interventions focused on medical management, [42,43,47,48,52,54,57,61,69,73,78]. Overall, no clear effects of SMI
medical and role management, or medical management, emotion were found on dealing with the chronic condition in daily life.
management and role management showed a trend in favor of the Specically, two studies had a signicant effect in favor of
control condition. The same pattern held for interventions intervention; ve studies had a trend in favor of intervention. In
delivered by a psychologist. Also, interventions provided in a contrast, three studies revealed a trend in favor of the control
clinic, online, or at home and in a clinic showed a trend in favor of condition and one study showed a signicant effect in favor of the
the control condition. In contrast, interventions provided at home control condition. The quality of evidence was very low (Table 1).
showed a trend in favor of intervention (Fig. 2ac). Of all interventions that aims to improve dealing with chronic
condition in daily life, interventions focused on medical manage-
ment, showed a trend in favor of intervention. The same pattern

Table 1
Evidence prole.

Quality assessment Number of Quality of the

patients evidence

Outcome (no. of studies) Limitation in Inconsistency Indirectness Imprecision Publication Ca Ib

design bias
Symptoms (24) No serious Serious No serious Very serious Unlikely 1019 1085 Very low
limitation inconsistency indirectness imprecision
Disease knowledge (19) No serious Serious No serious No serious Unlikely 771 626 Moderate
limitation inconsistency indirectness imprecision
Adherence (9) No serious Serious No serious Very serious Unlikely 333 387 Very low
limitation inconsistency indirectness imprecision
Dealing with chronic condition in No serious Very serious No serious Serious Unlikely 395 535 Very low
daily life (11) limitation inconsistency indirectness imprecision
Psychological outcomes (9) No serious Serious No serious Very serious Unlikely 367 378 Very low
limitation inconsistency indirectness imprecision
School attendance (5) Serious Serious Very serious No serious Unlikely 305 285 Very low
limitation inconsistency indirectness imprecision
Quality of life (13) No serious No serious No serious No serious Unlikely 705 757 High
limitation inconsistency indirectness imprecision
a
Number of patients that participated in the control condition.
b
Number of patients that participated in the intervention condition.

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people with chronic physical conditions: A systematic review, Patient Educ Couns (2016), http://dx.doi.org/10.1016/j.pec.2016.02.012
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Fig. 2. (A) Effectiveness of intervention component domain of self-management and format on symptom reduction. (B) Effectiveness of intervention component discipline
and setting on symptom reduction. (C) Effectiveness of intervention component interventionists on symptom reduction.

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people with chronic physical conditions: A systematic review, Patient Educ Couns (2016), http://dx.doi.org/10.1016/j.pec.2016.02.012
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M.I. Bal et al. / Patient Education and Counseling xxx (2015) xxxxxx 7

Fig. 2. (Continued)

held for mono-disciplinary interventions provided individually tendency; and six others showed a trend in favor of the control
and at home. In contrast, interventions provided online showed a condition. The quality of evidence was very low (Table 1).
trend in favor of the control condition (Fig. 5a and b). Of all interventions that aims to improve psychological
outcomes, interventions focused on medical management, showed
3.4.5. Outcome measure psychological outcomes a trend in favor of the control condition. The same pattern was
Nine studies focused on psychological outcomes [44,46,49,59 revealed for mono-disciplinary interventions and interventions
61,69,72,75,78]. In general, no clear effects of SMI were found on provided individually by a psychologist and online. In contrast,
this outcome measure. Specically, one study had a signicant interventions provided in groups showed a trend in favor of
effect in favor of intervention; two studies showed a positive intervention (Fig. 6ac).

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Fig. 2. (Continued)

3.4.6. Outcome measure school attendance SMI on dealing with the chronic condition, psychological outcomes
Five studies focused on school attendance as an outcome and quality of life. However, results about effectiveness should be
measure [43,58,62,63,79]. SMI showed a trend in favor of the interpreted with some caution, because the quality of evidence for
control condition: two studies showed a signicant effect in favor most outcome measures was rated as low. In addition, some
of the control condition one study showed a negative tendency, evidence was found for effective intervention components, but this
while two studies showed a trend in favor of intervention. The differs per outcome measure.
quality of evidence was very low (Table 1).
No clear pattern was revealed for intervention components. 4.1.1. Effectiveness of SMI
Possible evidence for effectiveness of SMI on disease knowledge
3.4.7. Outcome measure quality of life was also reported in previous reviews on SMI for adult patients
Thirteen studies focused on quality of life as an outcome [12,84]. Others showed possible evidence for effectiveness of SMI
measure [42,44,4750,57,58,61,65,70,74,78]. Overall, no clear on disease knowledge of youth with spina bida, arthritis, asthma,
effects of SMI were found on quality of life. Four studies had a or diabetes [17,18,8587] and for effectiveness of pediatric SMI on
signicant effect in favor of intervention; three studies showed a adherence [8890]. Moreover, earlier studies on youth showed that
trend in favor of intervention; one study showed a signicant effect both knowledge about the condition and medication adherence
in favor of the control condition; four studies showed a trend in are important to maintain health [91].
favor of the control condition. The quality of evidence was high Although Kirk et al. [21] underlined the need to incorporate
(Table 1). patient-centered outcomes such as quality of life and psychosocial
Of all interventions that aims to improve quality of life, well-being into SMI evaluation studies, conicting evidence for
interventions focused on medical management showed a trend in effectiveness of SMI on these outcome measures was found and
favor of intervention (Fig. 7). inconsistent results have been reported by others [12,84]. Nolte
et al. [92] pointed out that patient reported outcomes measures
4. Discussion and conclusion (e.g. quality of life and psychosocial well-being) are highly variable,
since these require the highest degree of personal appraisal.
4.1. Discussion Specically, people may dene depression or quality of life very
differently before SMI compared to after intervention, inuencing
We reviewed randomized controlled trials to explore the the reliability of measurements. These biases could have inu-
effectiveness and effective intervention components of SMI. In enced the results of included studies and, thus, our results.
contrast to existing literature, we looked at pediatric SMI in However, patient reported outcomes do provide insights into
general, i.e. irrespective of type of condition. Our ndings suggests patients lived experiences and are therefore highly relevant for
that pediatric SMI might be effective at inuencing disease studying self-management. Therefore, future studies designed to
knowledge, adherence, but not at symptom severity and school explore response shifts are recommended. For instance, qualitative
attendance. Conicting evidence was found for effectiveness of methods may shed light on how a patients context interacts with

Please cite this article in press as: M.I. Bal, et al., Exploring effectiveness and effective components of self-management interventions for young
people with chronic physical conditions: A systematic review, Patient Educ Couns (2016), http://dx.doi.org/10.1016/j.pec.2016.02.012
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Fig. 3. (A) Effectiveness of intervention component domain of self-management and format on disease knowledge. (B) Effectiveness of intervention component discipline
and setting on disease knowledge.

their lived experiences. This is in line with the recently posed We found some evidence that SMI aiming to support young
notion that patients context is important to consider when people to deal with the chronic condition in daily life should focus
researching self-management [93]. on medical management, emotion management and role manage-
ment, i.e. should consider a holistic view on self-management
4.1.2. Effective components of SMI [13,22]. This conclusion is in line with earlier ndings showing that
In addition to previous research on effectiveness of SMI ones illness behavior depends on ones perception of symptoms
[17,18,21], this review revealed some suggestions about and on the extent to which symptoms interfere with daily life [94],
components of SMI to be effective. Specically, SMI aimed to i.e. ones lived experiences [95,96]. In this light, the support need
improve adherence might be effective when focused on medical on dealing with chronic conditions in daily life is inuenced by
management and provided individually in a clinic or at home by lived experiences, and SMI on this outcome measure should
a mono-disciplinary team. This is not surprising, since adher- therefore include role management and emotion management,
ence is part of medical management and individual attention of besides medical management [13]. In addition, our review
one professional may enhance insights into personal barriers to suggests that these SMI might be mono-disciplinary programs,
adherence. provided individually and at home. These ndings are somewhat

Please cite this article in press as: M.I. Bal, et al., Exploring effectiveness and effective components of self-management interventions for young
people with chronic physical conditions: A systematic review, Patient Educ Couns (2016), http://dx.doi.org/10.1016/j.pec.2016.02.012
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Fig. 3. (Continued)

unexpected since peer-support was found to be an appropriate intervention components of self-management support focused on
element to stimulate dealing with the chronic condition in daily psychological outcomes, i.e. stress, anxiety and depression. In
life, i.e. enhance self-efcacy, and therefore we expected group contrast, we found some evidence for group sessions to be an
sessions and a clinical setting to be effective intervention elements effective intervention component. Earlier research showed the
[97,98]. However, taking a closer look at elements used in these perceived distress of people with chronic conditions and their need
SMI, we conclude that these individually provided programs for social support [99]. It might be necessary, therefore, to
facilitate peer-support using telemedicine element. This indicates incorporate elements that promote peoples sense of empower-
that online peer-support could also be an appropriate element to ment into SMI, if aiming to improve psychological outcomes
improve self-efcacy, problem solving skills and pro-active coping [100,101]. In addition cognitive behavioral therapy is commonly
behavior, as was earlier mentioned in literature [18]. However, used in the treatment of depression. According to the rationale
more research is needed to further validate this hypothesis, since behind the therapy, cognitive social learning theory, people should
we found some evidence that interventions provided online adapt their maladaptive cognitions and modify their behavior to
without a peer-support element might not be effective. reduce the depressive symptoms [102]. Group meetings may help
Our review suggests, too, that a mono-disciplinary team, an to discuss maladaptive cognitions and behaviors, and may help to
online setting and an individual format might not be effective change these into more adaptive ones. Also, our review suggests

Please cite this article in press as: M.I. Bal, et al., Exploring effectiveness and effective components of self-management interventions for young
people with chronic physical conditions: A systematic review, Patient Educ Couns (2016), http://dx.doi.org/10.1016/j.pec.2016.02.012
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Fig. 4. (A) Effectiveness of intervention component domain of self-management and format on adherence. (B) Effectiveness of intervention component discipline and setting
on adherence.

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people with chronic physical conditions: A systematic review, Patient Educ Couns (2016), http://dx.doi.org/10.1016/j.pec.2016.02.012
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Fig. 5. (A) Effectiveness of intervention component domain of self-management and format on dealing with a chronic condition in daily life. (B) Effectiveness of intervention
component discipline and setting on dealing with a chronic condition in daily life.

that SMI aimed to target psychological outcomes might not be appropriate content for SMI aiming to reduce stress, anxiety and
focused on medical management. This is not unexpected, because depression.
emotion management or a combination of emotion management Furthermore, we found that programs on symptom reduction
with role and/or medical management might be a more should be provided at home instead of in a clinic, home and clinic

Please cite this article in press as: M.I. Bal, et al., Exploring effectiveness and effective components of self-management interventions for young
people with chronic physical conditions: A systematic review, Patient Educ Couns (2016), http://dx.doi.org/10.1016/j.pec.2016.02.012
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Fig. 6. (A) Effectiveness of intervention component domain of self-management and format on psychological outcomes. (B) Effectiveness of intervention component
discipline and setting on psychological outcomes. (C) Effectiveness of intervention component interventionists on psychological outcomes.

Please cite this article in press as: M.I. Bal, et al., Exploring effectiveness and effective components of self-management interventions for young
people with chronic physical conditions: A systematic review, Patient Educ Couns (2016), http://dx.doi.org/10.1016/j.pec.2016.02.012
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Fig. 7. Effectiveness of intervention component domain of self-management on quality of life.

or online. An explanation for this nding could be that symptoms Last, the, in general, low quality of evidence for most outcome
arise in interacting with the social context. In line with this measures as rated using the GRADE methodology [35], down-
reasoning, SMI could be more effective when provided in peoples grades the strength of recommendations per outcome measure.
daily life. For example, Reeves et al. [103] indicated the The low quality of evidence was mainly caused by the variability
importance of social community to fulll self-management tasks. and heterogeneity of study results. Also it was not possible to
However, Krieger et al. [104] reviewed pediatric asthma perform a meta-analysis on the effects of SMI, since the outcome
interventions and found both home and clinical settings to be measures and intervention programs were very heterogeneous.
effective for symptom reduction. Also, no clear effects were found Therefore, results about effectiveness should be interpreted with
for any other intervention components. Elements of SMI on some caution. Different conceptualizations of self-management
symptom reduction seem to be too diverse and sample sizes are might be one explanation for the diversity of elements and content
too small, which hampers the evaluation of working elements of of SMI and the variety of outcome measures used in SMI evaluation
these interventions. It seems that the development of SMI is often studies, which points at a more fundamental challenge to provide
not based on theories [21,24,25,29]. Therefore, it is recommended precise denitions [105]. Others, too, recommended to further
to further standardize the development of SMI, and thus to standardize the development and evaluation of self-management
explicitly use theoretical frameworks when designing interven- interventions [16,17,84]. Intervention mapping methodology [98]
tions. Also, it could be that symptoms are too disease-specic and is a recommended stepwise approach for theory and evidence-
therefore effects on symptom reduction could not be appropri- based development and implementation of interventions that
ately analyzed in a review of SMI focusing on a variety of chronic helps to t intervention goals with program development and
conditions. Therefore it would be favorable to employ a disease program evaluation. In addition, a theoretically derived interven-
specic approach, when exploring effects of SMI on symptom tion would make for a more effective SMI, using components that
reduction. have been found to be effective in changing that specic outcome
[106].
4.1.3. Strengths limitations and other considerations
SMI for young people across the wide age range of 725 years 4.2. Conclusions
were included, while content or themes obviously are not
applicable to the whole age range, e.g. vocational participation Our review suggests that pediatric SMI might be effective at
pertains to older adolescents only. It would be advisable, therefore, inuencing disease knowledge and adherence across a wide range
to distinguish between age groups. However, a systematic of conditions. There are indications that SMI aimed to improve
overview of the content of SMI for young people aged between adherence should be focused on medical management, and should
7 and 25 years showed that interventions theoretical base, formats be provided individually in a clinical setting or at home by a mono-
and elements did not differ for different age groups [29]. disciplinary team. Furthermore, a holistic view on self-management,
This study looked at many types of SMI across a wide range of individual format and home setting combined with online peer-
chronic conditions. The breadth of this study is a potential support might be effective intervention components for SMI
strength. The ndings enable researchers and healthcare profes- focused on dealing with the chronic condition in daily life. These
sionals to look at general self-management support, which goes combinations of expected outcomes, focus and intervention
beyond particular chronic conditions. In addition, subgroup elements seemed effective irrespective of diagnosis, and may
analyses not presented in this paper showed no differences therefore act as good starting points for further improvement of
in effects between interventions focused on a distinctive diagnosis. and research into self-management support of young people with

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people with chronic physical conditions: A systematic review, Patient Educ Couns (2016), http://dx.doi.org/10.1016/j.pec.2016.02.012
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people with chronic physical conditions: A systematic review, Patient Educ Couns (2016), http://dx.doi.org/10.1016/j.pec.2016.02.012