Abstract
BackgroundThere is guidance in the United Kingdom about what long-term care stroke survivors should receive, but a lack of guidance about who should deliver it and where this care should take place. This is a key issue given the evidence that current needs are not well addressed. The purpose of this study was to explore when a referral from generalist to specialist services is appropriate in the long-term management of stroke survivors.MethodsA modified RAND-Appropriateness method was used to gain consensus from a range of stroke specialist and generalist clinicians. Ten panelists rated fictional patient scenarios based on long-term post-stroke needs. Round 1 was an online survey in which panelists rated the scenarios for a) need for referral to specialist care and b) if referral was deemed necessary, need for this to be specifically to a stroke specialist. Round 2 was a face-to-face meeting in which panelists were presented with aggregate scores from round 1, and invited to discuss and then re-rate the scenarios.ResultsSeventeen scenarios comprising 69 referral decisions were discussed. Consensus on whether the patient needed to be referred to a specialist was achieved for 59 (86%) decisions. Of the 44 deemed needing referral to specialists, 18 were judged to need referral to a stroke-specialist and 14 to a different specialist. However, for 12 decisions there was no consensus about which specialist the patient should be referred to. For some scenarios (spasticity; incontinence; physical disability; communication; cognition), referral was deemed to be indicated regardless of severity, whereas indications for referral for topics such as risk factor management and pain depended on complexity and/or severity.ConclusionsThere was broad agreement about when a stroke survivor requires referral to specialist care, but less agreement about destination of referral. Nevertheless, there was agreement that some of the longer-term issues facing stroke survivors are best addressed by stroke specialists, some by other specialists, and some by primary care. This has implications for models of longer-term stroke care, which need to reflect that optimal care requires access to, and better co-ordination between, both generalist and specialist healthcare.
Highlights
There is guidance in the United Kingdom about what long-term care stroke survivors should receive, but a lack of guidance about who should deliver it and where this care should take place
Increasing financial strain on the NHS in the UK can lead to pressure on clinicians to reduce referrals to specialist care [12] and so there is potential for patient needs being unmet by health care services even when they have been identified
Seventy-one referral decisions were discussed in Round 2; two were removed as the panel decided they did not add anything to the clinical picture
Summary
There is guidance in the United Kingdom about what long-term care stroke survivors should receive, but a lack of guidance about who should deliver it and where this care should take place. This is a key issue given the evidence that current needs are not well addressed. Increasing financial strain on the NHS in the UK can lead to pressure on clinicians to reduce referrals to specialist care [12] and so there is potential for patient needs being unmet by health care services even when they have been identified. The lack of evidence base for longer-term care of people with stroke in the community means that it is difficult to make firm recommendations
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