PurposeUnderstanding the effectiveness of complex, face‐to‐face health behaviour change interventions requires high‐quality measures to assess fidelity of delivery and engagement. This systematic review aimed to (1) identify the types of measures used to monitor fidelity of delivery of, and engagement with, complex, face‐to‐face health behaviour change interventions and (2) describe the reporting of psychometric and implementation qualities.MethodsElectronic databases were searched, systematic reviews and reference lists were hand‐searched, and 21 experts were contacted to identify articles. Studies that quantitatively measured fidelity of delivery of, and/or engagement with, a complex, face‐to‐face health behaviour change intervention for adults were included. Data on interventions, measures, and psychometric and implementation qualities were extracted and synthesized using narrative analysis.ResultsSixty‐six studies were included: 24 measured both fidelity of delivery and engagement, 20 measured fidelity of delivery, and 22 measured engagement. Measures of fidelity of delivery included observation (n = 17; 38.6%), self‐report (n = 15; 34%), quantitatively rated qualitative interviews (n = 1; 2.3%), or multiple measures (n = 11; 25%). Measures of engagement included self‐report (n = 18; 39.1%), intervention records (n = 11; 24%), or multiple measures (n = 17; 37%). Fifty‐one studies (77%) reported at least one psychometric or implementation quality; 49 studies (74.2%) reported at least one psychometric quality, and 17 studies (25.8%) reported at least one implementation quality.ConclusionFewer than half of the reviewed studies measured both fidelity of delivery of, and engagement with complex, face‐to‐face health behaviour change interventions. More studies reported psychometric qualities than implementation qualities. Interpretation of intervention outcomes from fidelity of delivery and engagement measurements may be limited due to a lack of reporting of psychometric and implementation qualities. Statement of contribution What is already known on this subject? Evidence of fidelity and engagement is needed to understand effectiveness of complex interventionsEvidence of fidelity and engagement are rarely reportedHigh‐quality measures are needed to measure fidelity and engagement What does this study add? Evidence that indicators of quality of measures are reported in some studiesEvidence that psychometric qualities are reported more frequently than implementation qualitiesA recommendation for intervention evaluations to report indicators of quality of fidelity and engagement measures

Objectives. To understand whether interventions are effective, we need to know whether the interventions are delivered as planned (with fidelity) and engaged with. To measure fidelity and engagement effectively, high-quality measures are needed. We outline a five-step method which can be used to develop quality measures of fidelity and engagement for complex health interventions. We provide examples from a fidelity study conducted within an evaluation of an intervention aimed to increase independence in dementia.Methods. We propose five steps that can be systematically used to develop fidelity checklists for researchers, providers, and participants to measure fidelity and engagement. These steps include the following: (1) reviewing previous measures, (2) analysing intervention components and developing a framework outlining the content of the intervention, (3) developing fidelity checklists and coding guidelines, (4) obtaining feedback about the content and wording of checklists and guidelines, and (5) piloting and refining checklists and coding guidelines to assess and improve reliability.Results. Three fidelity checklists that can be used reliably were developed to measure fidelity of and engagement with, the Promoting Independence in Dementia (PRIDE) intervention. As these measures were designed to be used by researchers, providers, and participants, we developed two versions of the checklists: one for participants and one for researchers and providers.Conclusions. The five steps that we propose can be used to develop psychometrically robust and implementable measures of fidelity and engagement for complex health interventions that can be used by different target audiences. By considering quality when developing measures, we can be more confident in the interpretation of intervention outcomes drawn from fidelity and engagement studies.

Background: It is important to evaluate fidelity of delivery and engagement during feasibility trials. However, there is little guidance on how to systematically develop strategies to improve implementation if problems arise. We aimed to: 1) Assess fidelity of delivery and engagement, 2) Identify factors influencing fidelity of delivery and engagement, and 3) Develop strategies to improve fidelity of delivery of, and engagement with, a complex intervention to improve independence in dementia, within a feasibility trial. Methods: A mixed methods evaluation of an intervention that aimed to improve independence in dementia. To assess fidelity of delivery and engagement, observation and self-report methods were used: 60% of audio-recorded intervention sessions were transcribed and reliably rated for fidelity. Providers (n = 12) and people with dementia/ supporters (n = 34) were asked to complete checklists after each session. Descriptive statistics were used to analyse the data. To identify factors influencing fidelity and engagement, one-to-one semi-structured interviews were conducted with providers (n = 8), people with dementia (n = 7) and supporters (n = 7). Thematic analysis and content analysis were used to analyse data. To develop strategies, we followed four steps proposed by the authors of the Behaviour Change Wheel (1. Understanding the behaviour, 2. Identifying intervention functions, 3. Specifying intervention content, 4. Identifying mode of delivery).

Introduction: To coordinate care effectively for rare conditions, we need to understand what coordinated care means. This review aimed to define coordinated care and identify components of coordinated care within the context of rare diseases; by drawing on evidence from chronic conditions. Methods: A systematic scoping review. We included reviews that reported or defined and outlined components of coordinated care for chronic or rare conditions. Thematic analysis was used to develop a definition and identify components or care coordination. Stakeholder consultations (three focus groups with patients, carers and healthcare professionals with experience of rare conditions) were held to further explore the relevance of review findings for rare conditions. Results: We included 154 reviews (n = 139 specific to common chronic conditions, n = 3 specific to rare conditions, n = 12 both common/rare conditions). A definition of coordination was developed. Components were identified and categorised by those that: may need to be coordinated, inform how to coordinate care, have multiple roles, or that contextualise coordination. Conclusions: Coordinated care is multi-faceted and has both generic and context-specific components. Findings outline many ways in which care may be coordinated for both rare and common chronic conditions. Findings can help to develop and eventually test different ways of coordinating care for people with rare and common chronic conditions.

Background Care coordination is considered important for patients with rare conditions, yet research addressing the impact of care coordination is limited. This study aimed to explore how care coordination (or lack of) impacts on patients and carers. Semi-structured interviews were conducted with 15 patients and carers/parents in the UK, representing a range of rare conditions (including undiagnosed conditions). Transcripts were analysed thematically in an iterative process. Results Participants described a range of experiences and views in relation to care coordination. Reports of uncoordinated care emerged: appointments were uncoordinated, communication between key stakeholders was ineffective, patients and carers were required to coordinate their own care, and care was not coordinated to meet the changing needs of patients in different scenarios. As a result, participants experienced an additional burden and barriers/delays to accessing care. The impacts described by patients and carers, either attributed to or exacerbated by uncoordinated care, included: impact on physical health (including fatigue), financial impact (including loss of earnings and travel costs), and psychosocial impact (including disruption to school, work and emotional burden). Overall data highlight the importance of flexible care, which meets individual needs throughout patients’/carers’ journeys. Specifically, study participants suggested that the impacts may be addressed by: having support from a professional to coordinate care, changing the approach of clinics and appointments (where they take place, which professionals/services are available and how they are scheduled), and improving communication through the use of technology, care plans, accessible points of contact and multi-disciplinary team working. Conclusion This study provides further evidence of impacts of uncoordinated care; these may be complex and influenced by a number of factors. Approaches to coordination which improve access to care and lessen the time and burden placed on patients and carers may be particularly beneficial. Findings should influence future service developments (and the evaluation of such developments). This will be achieved, in the first instance, by informing the CONCORD Study in the UK.