Svetlana Solgaard Nielsen, Alessio Bricca, Stavros Orologas, Ann-Marie Malby Schoos, Anna-Helene Bohr, Kija Lin Østergaard, Julie Mondahl, Sofie Ahlgreen Gram, Dan Grabowski, Fatma Demircioglu Bilgin, Marie Sofie Oxlund Hoppe, Tine Petz Rasmussen, Charlotte Simonÿ, Alexander Luijk, Line Nørgaard Remmen, Henrik Hallas, Louisa Mittet, Mette Tækker Jensen, Jeanette Reffstrup Christensen
Most interventions were short-term, healthcare professional-led multicomponent programs compared with usual care. Primary outcomes targeted symptom management and disease control. Mixed diagnoses, peer support, family activities, and non-professional delivery were uncommon. This study identified gaps in diagnosis coverage and the need for additional high-quality studies.
BACKGROUND: Family and community are key support sources for children and adolescents with chronic illnesses. This study aimed to map the characteristics of family- and community-centered interventions for pediatric chronic somatic disease.
METHODS: This scoping review followed the Arksey and O'Malley guidance. Through a systematic search in Medline (PubMed), EMBASE, PsycINFO, Cochrane, and CINAHL, free web sources, the gray literature, and citations, we identified publications of randomized controlled trials evaluating family- and community-centered interventions for children aged 0-17 years with asthma, type 1 diabetes, or juvenile idiopathic arthritis. Two or more reviewers independently conducted screening, verification of machine-assisted data extraction, risk-of-bias assessment, and narrative synthesis.
RESULTS: Of 7285 items identified, we included 76 publications on 71 interventions comprising 16,342 participants (median n = 157; IQR 81-303; range 12-1316) with a median age of 9 (range 0-19) years. Interventions incorporating educational, psychosocial, and care-coordination elements targeted asthma (68%), type 1 diabetes (29%), and juvenile idiopathic arthritis (3%) that had lasted ≤6 months (63%) and were delivered in person (83%) by healthcare professionals (62%). Primary outcomes included symptom burden (44%), coping with the disease (24%), disease control (20%), activity participation, child psychosocial functioning, medication or healthcare use (18% each), or child quality of life (17%). Usual care (59%) and other treatment (31%) were frequent comparators.
CONCLUSIONS: Most interventions were short-term, healthcare professional-led multicomponent programs compared with usual care. Primary outcomes targeted symptom management and disease control. Mixed diagnoses, peer support, family activities, and non-professional delivery were uncommon. This study identified gaps in diagnosis coverage and the need for additional high-quality studies.