Developing primary care services for stroke survivors: the Improving Primary Care After Stroke (IPCAS) research programme

Abstract

Background It is recognised that longer-term needs after stroke may not be well addressed by current services. The aim of this programme of research was to develop a novel primary care model to address these needs and to evaluate this new approach. Objectives The work was divided into three workstreams: development of a primary care model development of a ‘Managing Life After Stroke’ programme (including self-management) for people with stroke evaluation of the effectiveness and cost effectiveness of these interventions. Design The development of the primary care model involved information gathering in the form of literature reviews, patient and public involvement workshops, qualitative studies (interviews and focus groups), a consensus study and a pilot study, all feeding into a multidisciplinary intervention development group that approved the final primary care model. In parallel, a further literature review, consultation workshops with healthcare professionals and patients and public involvement fed into the iterative development of the ‘My Life After Stroke’ programme. In the final phase of the programme, the two interventions were evaluated in a cluster randomised controlled trial, which included a process evaluation and within-trial cost-effectiveness analysis. Setting General practices in the East of England and East Midlands. Participants People with a history of stroke identified from general practice stroke registers. Interventions The Improving Primary Care After Stroke model of primary care delivery. This comprised five components: a structured review; a direct point of contact; improving communication between primary and secondary care; local service mapping; and training of primary care professionals. The ‘My Life After Stroke’ self-management programme for people with stroke comprised an initial individual session, four weekly group-based sessions and a final individual session. Main outcome measures The coprimary end points for the trial were two subscales (emotion and participation) of the Stroke Impact Scale v3.0 at 12 months after randomisation. Secondary outcomes included the Stroke Impact Scale Short Form, the EuroQol-5 Dimension, five level questionnaire, the ICEpop CAPability measure for Adults, the Southampton Stroke Self-Management Questionnaire and the Health Literacy Questionnaire. Data sources General practice records for health economic costing data. Patient questionnaires for outcomes. Results Trial: 46 clusters (general practices) were randomised with 1040 participants. At 12 months, there was a 0.64 (97.5% confidence interval −1.7 to +2.8) improvement in the emotion outcome in the intervention arm compared to the control arm and a 1.3 (97.5% confidence interval −2.0 to +4.6) increase in the participation outcome in the intervention arm compared to control. There was also no evidence of effect of the intervention on short form Stroke Impact Scale, quality of life (EuroQol 5 Dimension 5 level questionnaire), well-being (ICEpop CAPability measure for Adults), Southampton Stroke Self-Management questionnaire or health literacy (Health Literacy Questionnaire). Process evaluation: over 80% of participants received a review. Only a third of patients attended the ‘My Life After Stroke’ course. The direct point of contact service was hardly used. The local directory of services had variable take-up by healthcare professionals. It did not prove possible to support improved communication between primary and secondary care as originally intended. Training fidelity was high. Cost-effectiveness analysis: the intervention increased primary care workload and was associated with a non-significant, higher quality-adjusted life-year at 12 months. The incremental cost per quality-adjusted life-year was £20,863. Limitations There were differences in age, sex and proportion of people from minority ethnic groups in the trial population as compared to a typical general practice stroke register. Uptake of the intervention was variable. Ceiling effects were observed in the primary outcome measure. Follow-up was limited to 12 months. Conclusions This programme of research has reaffirmed the importance of addressing longer-term needs of people after stroke in the community. The most commonly expressed need is fatigue. The primary care model that we developed was not effective at addressing these needs. Our qualitative findings suggest that an intervention focused on patients earlier after their stroke or one which is more intensive might be effective. There was a mismatch between the needs reported by stroke survivors and evidence available for how to address these needs. Future work Research to inform who should be offered poststroke assessment of needs in the community in the longer term (after 6 months). Development and evaluation of interventions to address fatigue, low mood and cognitive problems in people with stroke in the community. Study registration This study is registered as PROSPERO 2015 CRD42015026602. Trial registration This trial is registered as ISRCTNCT03353519. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research programme (NIHR award ref: PTC-RP-PG-0213-20001) and is published in full in Programme Grants for Applied Research; Vol. 12, No. 1. See the NIHR Funding and Awards website for further award information.