Developing a User Reported Measure of Care Co-ordination

Introduction: Older people with chronic conditions often receive poor care because of the fragmented way in which their services are delivered from multiple sources. Providers have limited tools to directly capture the views of older people about their experiences of care co-ordination. The study aim was to design and test a survey tool to capture the experiences of older people with chronic conditions regarding how well their health and (where applicable) social care was co-ordinated. Method: To inform the questionnaire development, we reviewed the literature on existing surveys and care co-ordination theory, and on the health status of our target audience (people aged 65 or over with one or more chronic conditions and not in hospital or residential institutions). We also consulted stakeholders including those working in health and social care services and those with expertise in the subject area. We grouped questions around experiences of care in three dimensions: care in the home environment, planned transitions in care and unplanned situations. We also designed the questions so they could be mapped onto three recognised dimensions of continuity of care – management continuity, information continuity and relational continuity – as articulated in the international literature. The questionnaire was tested using focus groups and cognitive interviews and piloted with people aged 65 and over with at least one chronic condition, using a postal survey. We used service user records in 32 general practices located in four areas and a population database held by one local authority in England as the sampling frame. Results: The pilot achieved an overall response rate of 27.6% (n = 562 responses). Ninety five percent of respondents answered 30 or more of the 46 questions and three respondents answered fewer than 10 questions. Twenty four items achieved one or more positive correlations greater than 0.5 with other survey items and four instances of positive associations greater than 0.7 were found. Discussion/conclusion: The growing focus on care co-ordination demonstrates the need for a tool that can capture the experiences of patients accessing care across organisational and professional boundaries, to inform the improvement of care co-ordination activities from a patient perspective. Early results suggest that our tool may have a contribution to make in these areas. However, more work is required to test the efficacy of the tool on a larger scale and in different settings, and to find ways of improving response rates