Background: self-management interventions (SMIs) are complex interventions considered critical to achieve high-quality care for patients living with chronic conditions (CC). Incorporating the perspective of patients with CC and their caregivers is essential for a successful implementation of SMIs.
Objectives: to map and synthesize the evidence addressing perspective of patients and their caregivers on SMIs for four CC (chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), obesity, and type 2 diabetes mellitus (T2DM). Specifically, we aim to:
1) characterize the extent of evidence informing about the perspective of patients and caregivers on SMIs outcomes, and;
2) to explore the extent to which outcomes assessed in clinical trials of SMIs are relevant for patients according to the available scientific evidence.
Methods: we conducted a scoping review and searched systematically for quantitative systematic reviews (SRs), qualitative evidence synthesis (QES), and mixed methods synthesis (MMS) in MEDLINE, CINAHL and PsycINFO, up to February 2018. Two authors independently screened references for inclusion. Our work was conducted for COMPAR-EU, a European Project that aims to identify and rank the most cost-effective SMIs for four CC. We applied a descriptive thematic synthesis guided by a SMI taxonomy developed in the COMPAR-EU project. The results were used in the development process of a core outcome set (COS) for each chronic condition.
Results: from an initial set of 6064 references we selected 109 studies (T2DM 35; CHF 32; COPD 27, and obesity 15) (Fig 1). Most studies were published after 2013 (76/109, 70%). Contacting authors were mainly from the UK (38/109, 35%), USA (16/109, 15%), and Australia (14/109,13%). Most SRs were QES or MMS (92/109, 84%). Quantitative findings (Fig 2) reported health utility estimates for 72 outcomes, derived from 17 SRs; T2DM was the condition with most outcomes addressed (43/72, 60%). Qualitative findings (Fig 2) were related to living with the condition, with 36 themes derived from 33 QES; the major themes were burden of symptoms and perceptions of healthcare services. Forty themes were related to self-care processes and were derived from 41 QES; the major themes were knowledge, psychological distress, and self-care adherence. Over 24 QES explored patients and caregivers’ experiences with specific SMIs; we identified 49 themes, with personal beliefs being the most important. Overall, our findings informed 53% (169) of the outcomes included in the COS. Obesity was the least informed condition (35%).
Conclusions: we have reviewed the body of evidence addressing the perspective of patients and caregivers on SMIs. Our results informed the selection of COS in the COMPAR-EU Project. Results will help to guide the research agenda on SMI.
Patient or healthcare consumer involvement: this scoping review maps and describes the available body of evidence informing about the perspective of patients and their caregivers on SMI.