A Core Outcome Set to assess benefits of integration for people with complex needs: Identifying what to measure. 

Background: Health and care policy in England aims to shift care from hospitals to the community, including for people with long-term complex health and care needs. People with complex needs tend to be frequent users of health and care services both within the community and in hospitals, and often experience disjointed care. Integrated Care Systems (ICS) are responsible for organizing and delivering care in local communities, and aim to improve the coordination of care for patients and service users. 

 

To assess the benefits of integration, including community-delivered integrated care, for people using services, it needs to be systematically and comprehensively evaluated. To date there is limited understanding on how to assess the benefits of integration and the effectiveness of ICS services. Our study explores the feasibility of developing a person-centred Core Outcome Set (COS), relevant across services, to assess integrated care for people with complex health and care needs. 

 

Approach: A COS approach identifies (through literature reviews) and gains consensus (through stakeholder consultation) about what needs to be measured, and how to measure. The study is supported by three Patient and Public Involvement advisors with lived experience of integrated care for people with complex needs. 

 

This abstract reports the findings from the literature reviews on what to measure. Six connected reviews were conducted to draft a list of relevant outcomes. An initial analysis framework was developed from Kelly et al (2020) to organize outcomes of importance, and findings from the reviews were added to this framework. 

 

Results The standard COS approach is to review outcomes from trials: however, this was unlikely to uncover all relevant outcomes for measuring integration. Therefore, additional reviews specifically focused on related topics such as patient and carer perspectives of integration, outcomes considered relevant by ICSs, or outcomes used by policy makers and regulatory bodies in England. The initial draft list of outcomes includes ten domains: 1) Health and functional status, 2) Psychological well-being, 3) Social well-being, 4) Quality of life (QoL); 5) Experience of care and integration; 6) Person centred holistic care; 7) Carer outcomes, 8) Empowerment and self-management; 9) Access and equity; and 10) Safety. Each domain has multiple sub-domains: e.g. Domain 4 QoL includes sub-domains of health-related QoL and social-care related QoL. Next steps include refining this draft list prior to conducting a Delphi survey with professional and lay stakeholders. 

 

Implications: This first phase of developing a COS for integrated care has identified a wide range of potential outcomes. Next, we will present a comprehensive and robust list of outcomes to professional and lay stakeholders in a Delphi survey, allowing us to create an evidence-based COS for measuring the quality of integrated care for people with complex health and care needs. This study focuses on ICSs and policymakers in England, and could be used to evaluate the success of the shift towards community care. However, findings will also be valuable for those aiming to evaluate integration in other settings and locations, including community care.