From: Scoping review of patient- and family-oriented outcomes and measures for chronic pediatric disease
Patients | Children and/or adolescents (i.e., 0-18 yrs) with a chronic disease for which etiology/manifestation(s) are genetic, metabolic or neurologic, and which necessitates specialist pediatric care involving medical, surgical or nutritional intervention, and/or; the families/caregivers of these children and/or adolescents. |
Intervention | Not applicable |
Comparator | Not applicable |
Outcome | Patient- and family-oriented (as defined by the SORT framework), and; measured using self-administered instrument(s) |
Study characteristics | Peer-reviewed, English-language, full journal articles describing primary studies that included ≥5 eligible patients, published 2002-2012 |