Integrated care for children and young people with special health and care needs: a systematic review

Context There is a dearth of high-quality evidence on integrated, coordinated and cost-effective care for children with special health and care needs (CSHCN).Objective To assess the effectiveness of integrated/coordinated care models for CSHCN.Data sources Embase, Ovid Medline(R), HMIC Health Management Information Consortium, Maternity & Infant Care Database (MIDIRS), PsycARTICLES, PsycINFO, Social Policy and Practice, Cochrane Central Register of Controlled Trials (CENTRAL), Global Health and PubMed.Study selection Inclusion criteria comprised (1) randomised trials, including cluster randomised trials; (2) an integrated/coordinated care intervention; (3) for children and young people under 25 with special healthcare needs including medical complexity; (4) assessing child-centred outcomes, health-related quality of life among parents and carers, and health or social care use, processes of care and satisfaction with care.Data extraction Data were extracted and assessed by two researchers, and descriptive data were synthesised according to outcome and intervention.Results 14 randomised controlled studies were included. Seven out of the 14 studies had a dedicated key worker/care coordinator as a vital part of the integrated/coordinated care intervention; however, the certainty of evidence for all outcomes was either 'low' or 'very low'.Limitations Included studies were mostly from high-income countries. Variable study outcomes and quality of evidence precluded meta-analysis.Conclusions Limited evidence favours integrated care for CSHCN using a dedicated key worker/care coordinator; however, heterogeneity in study outcomes and definitions of CSHCN limit the strength and utility of evidence obtained. Recommendations are made for improving integrated care practice, research and evaluation which are important for evidence-based health services for CSHCN.PROSPERO registration number CRD42020209320.