Outcomes assessment for people with long-term neurological conditions: a qualitative approach to developing and testing a checklist in integrated care

Background: Failure to demonstrate the effect of integration on service users using conventional outcome measures suggests that research to date has failed to measure the outcomes that actually matter to people with complex long-term conditions and that might result from integrated health and social care. Developing outcome measures that capture the important issues for service users may also help to better reflect the particular ways integrated teams work and what such teams strive to achieve in addressing service user outcomes. Objectives: The objectives of this research were to (1) identify factors that affect integration between health and social care; (2) identify outcomes important to people with long-term neurological conditions (LTNCs) who are clients of an ‘integrated’ service; (3) develop these outcomes into a checklist and explore whether or not these outcomes can be assessed in practice; and (4) understand how different models of integration affect outcomes. Design, methods and participants: A case study approach, using in-depth, semistructured interviews, was adopted. The cases were four English primary care trusts (PCTs) and their associated local authorities. Case sites had a neurological-rehabilitation team (NRT), each with a different approach to health and social care integration. The research took place in three stages. In stage 1, interviews with 43 commissioners, managers, NRT staff and social care practitioners, and documentary analysis, helped to understand service contexts and approaches to assessment. Interviews, guided by earlier outcomes work, were held with 35 people with LTNCs to identify important outcomes. Interviews with 13 carers illustrated relationships between NRTs and carers. In stage 2, these outcomes were developed into a checklist in partnership with NRTs. NRTs used the outcomes checklist (OC) as part of their routine assessment, and we monitored its use. In stage 3, we conducted interviews and focus groups with 21 NRT staff and 12 clients to evaluate the use of the OC in practice. Analysis: Qualitative data were managed and analysed thematically using the framework approach. Results: Person, service and structural-level factors influenced integration between health and social care. Relationships between practitioners and services often drove integration in practice. However, wider structural arrangements were important and could facilitate these relationships. We identified 20 outcomes important to people with LTNCs