LoTS-2-Care: Development and evaluation of strategies to provide longer-term health and social care for stroke survivors and their carers.

We developed an intervention, called New Start, to improve quality of life of stroke survivors in the longer-term. New Start was appreciated by some stroke survivors but others found it difficult to engage with.

Key findings from across the five workstreams are summarised below.

• Through interviews with stroke survivors and their carers, and review of the literature, we identified and then prioritised 23 post-stroke unmet needs.
• Through comprehensive reviews of literature relating to interventions that may enhance longer-term outcomes for people after stroke, we found the most convincing evidence available was of supported self-management.
• We captured the variability of current stroke services though a national survey and focus groups and found that only a small minority of services saw people beyond 12 months after stroke. We therefore focussed on developing an intervention to be delivered at approximately 6 months post-stroke.
• Using techniques of intervention mapping and further refinement through case studies in 3 stroke services, we developed an intervention (called New Start) which includes a priming tool to assist stroke survivors and their carers to identify needs; problem solving self-management with stroke survivors and carers; providing help with obtaining usable information; and helping stroke survivors and their carers build sustainable flexible support networks.
• We successfully undertook a feasibility cluster randomised trial of New Start in 10 stroke services. Postal recruitment approaches were proven to be feasible and stroke survivors receiving the intervention appreciated it. However, some stroke survivors and staff delivering the intervention found it difficult to engage with problem-solving.

The aim of this programme of work was to develop and evaluate key aspects of a replicable system of longer-term (beyond six months post-stroke) service delivery ‘care strategy’. The emphasis was on improving quality of life by addressing unmet needs and enhancing participation.

Workstream 1: This study interviewed stroke survivors and their carers to discuss with them factors influencing unmet needs and things that have helped or hindered their daily lives. Our literature reviews were also updated to identify any effective interventions, and recommended or innovative ideas to support the implementation of the care strategy.

Workstream 2: A national survey of stroke services was undertaken to gain information on who might provide longer-term care and support.

Workstream 3: Techniques of intervention mapping were used to develop a care strategy, supporting materials and training programmes (for stroke survivors, carers and staff) using the information obtained from workstreams 1 and 2.

Workstream 4: This workstream was undertaken to refine content and test implementation of the care strategy through case studies in three stroke services. Work was also carried out to assess methods of stroke survivor identification and recruitment to stroke rehabilitation trials.

Workstream 5: A feasibility cluster randomised trial with embedded process evaluation to refine procedures for a future large scale trial was undertaken.

Workstream 1a – through interviews with 28 stroke survivors and 11 carers, and review of the literature, we identified and then prioritised 23 post-stroke unmet needs. The factors that stopped people from addressing their needs (barriers) and the factors that enabled them to address their needs (facilitators) were also identified.

Workstream 1b – reviews of literature relating to interventions that may enhance longer-term outcomes for people after stroke highlighted that there was very little evidence of intervention effect on outcomes relevant to this population. The most convincing evidence available was of supported self-management.

Workstream 2 – the variability of current stroke services was captured through a national survey and focus groups with colleagues providing those services. As only a small minority of services saw people beyond 12 months after stroke, we focused on developing an intervention to be delivered at approximately 6 months post-stroke.

Workstream 3 – using the information obtained in the earlier workstreams, we convened a group of stroke survivors and service providers and, working with the research team, developed an intervention to address unmet needs and enhance participation (i.e. involvement in life situations) for people after stroke. The intervention (called New Start) includes a priming tool to assist stroke survivors and their carers to identify needs; problem solving self-management with stroke survivors and carers; providing help with obtaining usable information; and helping stroke survivors and their carers build sustainable flexible support networks.

Workstream 4 – the intervention was further refined by working with three stroke services to test parts of the intervention. Action groups were convened and facilitators were appointed to deliver the intervention. Following feedback from staff and patients, the intervention was finalised. Intervention delivery is face to face at 6 months post-stroke, supported by a range of intervention materials and by facilitators who have undertaken a purposely designed and comprehensive training programme.

Workstream 5 – we undertook a feasibility trial and embedded process evaluation of New Start in 10 stroke services; five were allocated by randomisation to deliver New Start and the other five continued providing their usual service to all stroke survivors. A total of 269 stroke survivors were included in the trial; some stroke survivors chose not to accept an offered service. Some stroke survivors and the staff delivering the intervention found it difficult to engage with problem solving, although stroke survivors receiving the intervention appreciated it. This work suggested that, with some optimisation of the intervention, a larger trial evaluation is feasible. The intervention could include a screening assessment for those who do not wish to receive or do not require this approach.

Conclusions

A considerable number of new data, including identification of unmet needs, have been generated to inform the longer-term challenges faced by people after stroke, and the variability of stroke service provision has been highlighted. It is appropriate that all stroke survivors be offered the opportunity for a review/contact with services at 6 months after their stroke; however not all stroke survivors feel that they need such a review. The approach and framing of the review influences take up.

The feasibility trial showed encouraging results for future trialling of interventions targeted at longer-term stroke survivors with stroke service recruitment and stroke survivor postal recruitment and outcome data collection all proving to be feasible; however, refinement of intervention targeting and delivery is required prior to undertaking any future definitive trials.

Forster A, Hartley S, Barnard L, Ozer S, Hardicre N, Crocker T, et al. An intervention to support stroke survivors and their carers in the longer term (LoTS2Care): study protocol for a cluster randomised controlled feasibility trial. Trials (2018) 19(1):317. doi:10.1186/s13063-018-2669-5. PDF

Forster A, Hardicre NK, Crocker TF, Wright A, Burton LJ, Ozer S, Atkinson R, House A, Hewison J, McKevitt C, Farrin AJ and on behalf of the LoTS2Care Programme Management Group. An intervention to support stroke survivors and their carers in the longer term (LoTS2Care): study protocol for the process evaluation of a cluster randomised controlled feasibility trial. Trials 2018;1119(1):368. PDF

Forster A, Ozer S, Crocker TF, House A, Hewison J, Roberts E, Dickerson J, Carter G, Hulme C, Fay M, Richardson G, Wright A, McKevitt C, McEachan R, Foy R, Barnard L, Moreau L, Prashar A, Clarke D, Hardicre N, Holloway I, Brindle R, Hall J, Burton LJ, Atkinson R, Hawkins RJ, Brown L, Cornwall N, Dawkins B, Meads D, Schmitt L, Fletcher M, Speed M, Grenfell K, Hartley S, Young J, Farrin A. Longer-term health and social care strategies for stroke survivors and their carers: the LoTS2Care research programme including cluster feasibility RCT (nihr.ac.uk) Southampton (UK): NIHR Journals Library; 2021 Mar. PMID: 33819000.

Forster A, Ozer S, Brindle R, Barnard L, Hardicre N, Crocker TF, Chenery M, Moreau L, Wright A, Burton LJ, Hartley S, Hulme C, Dawkins B, Holloway I, House A, Hewison J, Farrin A; LoTS2Care Programme Team. An intervention to support stroke survivors and their carers in the longer term: results of a cluster randomised controlled feasibility trial (LoTS2Care). Pilot Feasibility Study. 2023 Mar 15;9(1):40. doi: 10.1186/s40814-023-01258-6. PMID: 36922866; PMCID: PMC10015731. https://pilotfeasibilitystudies.biomedcentral.com/articles/10.1186/s40814-023-01258-6

Forster A, Hartley S, Barnard L, Ozer S, Hardicre N, Crocker T, et al. An intervention to support stroke survivors and their carers in the longer term (LoTS2Care): study protocol for a cluster randomised controlled feasibility trial. 2018;19:317. https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-018-2669-5#Abs1

Hardicre NK, Crocker TF, Wright A, Burton LJ, Ozer S, Atkinson R, et al. An intervention to support stroke survivors and their carers in the longer term (LoTS2Care): study protocol for the process evaluation of a cluster randomised controlled feasibility trial. 2018;19:368.https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-018-2683-7

Crocker TF, Ozer S, Brown L, Hall JF, Forster A. Non-pharmacological interventions for longer-term stroke survivors or their carers: an overview of Cochrane Reviews. Cochrane Database Syst Rev 2019;4:CD013317. https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD013317/full

Crocker TF, Brown L, Lam N, Wray F, Knapp P, Forster A. Information provision for stroke survivors and their carers. Cochrane Database Syst Rev. 2021 Nov 23;11(11):CD001919. doi: 10.1002/14651858.CD001919.pub4. PMID: 34813082; PMCID: PMC8610078 https://www.cochrane.org/CD001919/STROKE_providing-information-stroke-survivors-and-their-carers

Dickerson J, Forster A. Questions people ask about stroke: what’s changed in 20 years? SAGE Open Med 2015;3:2050312115591623. https://pubmed.ncbi.nlm.nih.gov/26770790/

Investigators

Forster A, Young J, Hewison J, House A, Hulme C, Hawkins R, Dickerson J, Richardson G, Bhakta B, Hartley S, Speed M, McKevitt C, Farrin A, Fay M, McEachan R, Foy R

List of Collaborators

• Bradford Teaching Hospitals NHS Foundation Trust
• University of Leeds
• Affinity Care: Bradford
• Wakefield Council
• King’s College London

We are grateful to participating stroke services, stroke survivors and their carers who contributed so much to this research.

October 2013 – March 2019

National Institute for Health and Care Research (NIHR)

This summary presents independent research funded by the National Institute for Health and Care Research (NIHR) under its Programme Grants for Applied Research Programme (Development and evaluation of strategies to provide longer-term health and social care for stroke survivors and their carers, RP-PG-0611-20010). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

For further information contact Professor Anne Forster