Self-care support for children and adolescents with long-term conditions: the REfOCUS evidence synthesis

BACKGROUND: Self-care support (e.g. education, training, peer/professional support) is intended to enhance the self-care capacities of children and young people, while simultaneously reducing the financial burden facing health-care systems.

OBJECTIVES: To determine which models of self-care support for long-term conditions (LTCs) are associated with significant reductions in health utilisation and costs without compromising outcomes for children and young people. DESIGN: Systematic review with meta-analysis.

POPULATION: Children and young people aged 0-18 years with a long-term physical or mental health condition (e.g. asthma, depression).

INTERVENTION: Self-care support in health, social care, educational or community settings.

COMPARATOR: Usual care.

OUTCOMES: Generic/health-related quality of life (QoL)/subjective health symptoms and health service utilisation/costs.

DESIGN: Randomised/non-randomised trials, controlled before-and-after studies, and interrupted time series designs.

DATA SOURCES: MEDLINE, EMBASE, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, ISI Web of Science, NHS Economic Evaluation Database, The Cochrane Library, Health Technology Assessment database, Paediatric Economic Database Evaluation, IDEAS, reference scanning, targeted author searches and forward citation searching. All databases were searched from inception to March 2015.

METHODS: We conducted meta-analyses, simultaneously plotting QoL and health utilisation effects. We conducted subgroup analyses for evidence quality, age, LTC and intervention (setting, target, delivery format, intensity).

RESULTS: Ninety-seven studies reporting 114 interventions were included. Thirty-seven studies reported adequate allocation concealment. Fourteen were UK studies. The vast majority of included studies recruited children and young people with asthma (n = 66, 68%). Four per cent of studies evaluated 'pure' self-care support (delivered through health technology without additional contact), 23% evaluated facilitated self-care support (/= 2 hours'/four sessions' contact) and 8% were case management (>/= 2 hours' support with multidisciplinary input). Self-care support was associated with statistically significant, minimal benefits for QoL [effect size (ES) -0.17, 95% confidence interval (CI) -0.23 to -0.11], but lacked clear benefit for hospital admissions (ES -0.05, 95% CI -0.12 to 0.03). This finding endured across intervention intensities and LTCs. Statistically significant, minimal reductions in emergency use were observed (ES -0.11, 95% CI -0.17 to -0.04). The total cost analysis was limited by the small number of data. Subgroup analyses revealed statistically significant, minimal reductions in emergency use for children aged /= 2 hours per four sessions of support (ES -0.10, 95% CI -0.17 to -0.03). Preliminary evidence suggested that interventions that include the child or young person, and deliver some content individually, may optimise QoL effects. Face-to-face delivery may help to maximise emergency department effects. Caution is required in interpreting these findings.

LIMITATIONS: Identification of optimal models of self-care support is challenged by the size and nature of evidence available. The emphasis on meta-analysis meant that a minority of studies with incomplete but potentially relevant data were excluded.

CONCLUSIONS: Self-care support is associated with positive but minimal effects on children and young people's QoL, and minimal, but potentially important, reductions in emergency use. On current evidence, we cannot reliably conclude that self-care support significantly reduces health-care costs. FUTURE WORK: Research is needed to explore the short- and longer-term effects of self-care support across a wider range of LTCs.

STUDY REGISTRATION: This study is registered as PROSPERO CRD42014015452. FUNDING: The National Institute for Health Research Health Services and Delivery Research programme.

TERMINOLOGY: Throughout this report, we use the term 'parent'. This term is intended to cover a breadth of roles and has been chosen in preference to alternative and lengthier terms such as 'parent/guardian' or 'adult caregiver'. We acknowledge that not all adults who are parenting children are biological parents.