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

Abstract

BackgroundFailure 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.ObjectivesThe 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 participantsA 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.AnalysisQualitative data were managed and analysed thematically using the framework approach.ResultsPerson, 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. These were grouped into three outcome domains: personal comfort, economic and social participation, and autonomy. Use of the OC in practice was viewed differently by the NRTs. One NRT felt that it duplicated existing assessments, one felt that it covered issues outside their remit and two felt that the OC worked for them. Some of the outcomes could be difficult for staff and clients to raise but clients felt that they should all be included in assessments. Use of the OC was sometimes challenging due to staffing and caseload pressures, changes to service structures and remit, and competing demands of other compulsory paperwork. All NRTs thought that the OC had potential value as a benchmarking or training tool. Larger, more interdisciplinary models of integrated NRTs appeared to give more scope for interpreting, assessing and potentially achieving outcomes.ConclusionsMany of the outcomes that are important to service users with LTNCs are not addressed in validated ‘outcome measures’. This has implications for commissioners and practitioners to ensure that service users’ needs are met in practice. Turning the OC into a measurement tool could go some way to addressing this. Many of the outcomes are interdependent; an impact on one particular outcome will have a ‘knock-on’ effect on other outcomes. These inter-relationships demonstrate the complexity of what is important in the lives of people with LTNCs. Service changes can affect integrated arrangements negatively. More research is needed to explore the longer-term effects of organisational change on integrated service provision.FundingThe National Institute for Health Research Health Services and Delivery Research programme.