Stroke is the leading cause of adult disability in Australia. We have had major breakthroughs in medical management of stroke, with treatments like “clot-buster” drugs and surgery to retrieve clots leading to more people surviving their stroke. However, most people who survive their stroke have ongoing disability – nearly two-thirds of stroke survivors need assistance for their regular daily activities. This is where rehabilitation can help – rehabilitation is an umbrella term covering all treatments that are individually tailored to a person’s goals that are aimed at addressing that person’s disability and maximising their function and quality of life.
Anecdotally, there are not enough rehabilitation services for all the people with stroke who could benefit. Decisions about who should and should not access rehabilitation can vary between different hospitals, different reviewers and can be affected by things like how much the family pushes for rehabilitation. In an ideal world, all stroke survivors should be assessed for whether they are likely to improve function or quality of life with rehabilitation – defined as an assessment of rehabilitation need. Following the assessment, all stroke survivors with identified rehabilitation needs should be referred to rehabilitation services. This way, information can be collected about stroke survivors with rehabilitation needs who cannot access rehabilitation, which could then be used to lobby for increased rehabilitation services if a shortfall in service provision was found.
Between 2012-2015, we ran a cluster-randomised trial at 10 hospitals in South Australia and New South Wales, aiming to improve the way rehabilitation needs were identified, and the way referrals to rehabilitation services were being made. We introduced the Assessment for Rehabilitation Tool at all sites - this is an evidence-based decision-making tool developed in Australia by a group of clinicians, researchers and consumers. The Assessment Tool can help clinicians to identify whether a stroke survivor has rehabilitation needs, and how these needs can best be managed. We designed the research project to investigate whether a one-off education session and provision of the Assessment for Rehabilitation Tool was as effective as a multifaceted approach (which involved multiple education sessions, barrier identification, facilitated strategy development workshops, reminders and provision of the Assessment Tool) for improving the way rehabilitation needs of stroke survivors are identified and managed.
We collected information from the 10 participating hospitals about how the Assessment Tool was being used, and what influenced its use. We observed team meetings and ward rounds in acute stroke units to see how rehabilitation needs were discussed, documented and managed. We reviewed medical records of patients with stroke to look at what demographic and stroke factors influenced referrals and access to rehabilitation. We also interviewed staff from acute stroke units to seek their perspectives on use of the Assessment for Rehabilitation Tool, and what they considered important when deciding whether to refer patients to rehabilitation services.
We found that judgements about stroke survivors’ rehabilitation needs tended to be based on whether staff expected that the stroke survivor would be able to access a rehabilitation service. Rehabilitation needs were frequently not identified for stroke survivors whose needs fell outside the scope of the current rehabilitation services, so for example people with severe stroke and people with comorbid dementia tended not to have rehabilitation needs identified. This is an important problem, because these groups of stroke survivors have very clear rehabilitation needs and usually improve independence and quality of life with rehabilitation, but their more complex rehabilitation needs were not being identified by hospital staff and these stroke survivors subsequently tended not to be referred to rehabilitation services.
We found that both the education intervention and the more hands-on multifaceted intervention improved the way rehabilitation needs were identified, but did not change the proportion of patients who were referred to rehabilitation services, nor the proportion of patients who accessed rehabilitation. Some acute hospital staff reported reluctance to refer all patients with rehabilitation needs to rehabilitation services for fear of damaging their relationship with the rehabilitation service providers.
We have presented these findings to consumer, clinical and research audiences. We have collaborated with Australia’s peak stroke body, the Stroke Foundation, to advise on wording of the national Stroke Audit which is conducted every two years. This has enabled the collection of information on a national level about how rehabilitation needs of stroke survivors are being identified and managed, and objective reasons why rehabilitation is not indicated or why rehabilitation is not accessed. These contributions to the Stroke Audit have facilitated data collection about unmet rehabilitation needs in Australia, which may be used to advocate for increased stroke rehabilitation services.
We continue to provide advice and mentoring to clinicians regarding how to implement the Assessment for Rehabilitation Tool, so clinicians are empowered and confident to conduct patient-centred, evidence-based assessments, and refer to rehabilitation according to patients’ rehabilitation needs.
Different team members were involved in updating the Australian Stroke Clinical Guidelines which were released in 2017 and Elizabeth Lynch was nominated to lead the section regarding assessment of rehabilitation needs. The Stroke Clinical Guidelines now explicitly recommend use of the Assessment for Rehabilitation Tool, and recommend that every person with rehabilitation needs be referred to a rehabilitation service. The impact of the new Stroke Clinical Guidelines has yet to be evaluated.
This project was led by Elizabeth Lynch as her PhD, supported by supervisors Professor Susan Hillier (University of South Australia), Professor Dominique Cadilhac (Monash University) and Dr Julie Luker (University of South Australia). We received financial support from grants awarded by the Agency for Clinical Innovation (New South Wales) and the Stroke Foundation. The Assessment for Rehabilitation Tool was developed and disseminated by the Australian Stroke Coalition.