1.4.1 Community rehabilitation and follow-up services
As the early post-discharge period is consistently reported by stroke survivors and their families/carers to be a difficult time, the provision of simple and relevant services appears important.4 The needs identified by the stroke team and the stroke survivor and family/carer via the pre-discharge needs assessment, and availability of local community services, will determine which services are preferred. Rehabilitation will often need to continue after discharge either as part of an early supported discharge (ESD) program or as general community rehabilitation and can be undertaken in various settings depending on availability of transport, wishes of the stroke survivor and family/carer, and local resources. Generally there are two models for rehabilitation in the community:
• centre-based therapy, provided in the hospital or in a community facility, and including rehabilitation for those attending on a full-day basis or as an out-patient • home-based or domiciliary rehabilitation.
ESD is a model that links in-patient care with community services with the aim of reducing LOS. ESD services should be considered an extension of stroke unit care rather than an alternative. A key argument for ESD is that the home provides an optimum rehabilitation environment, since the goal of rehabilitation is to establish skills that are appropriate to the home setting. One Cochrane review (11 RCTs) and another systematic review (seven RCTs) found that ESD services reduce in-patient LOS and adverse events (e.g. readmission rates) while increasing the likelihood of being independent and living at home.68, 69 Risks relating to carer strain might be expected with ESD, but there is too little evidence to demonstrate whether or not this is the case.68, 69 ESD trials included people with mild to moderate disability
transfers, ongoing prevention of functional decline and other specific stroke-related problems.67 Another RCT (n=70) of an intervention of therapeutic weekend care, bedside teaching and structured information for relatives during rehabilitation reported long-term benefits (reduced institutionalisation and mortality).60 Ideally training should occur in both hospital and home environments.
and thus ESD services should target this group of stroke survivors.68, 69 Stroke survivors have reported greater satisfaction following ESD than conventional care. To work effectively, ESD services must have similar elements to those of organised stroke teams (see 1.2.1 Stroke unit care). The level of services available following discharge from hospital can be poor, and stroke survivors and their families/ carers often report being dissatisfied with the information, support services and therapy available.70 Therefore, while there is great pressure to ensure early discharge from acute services, the evidence is based on early supported discharge, and it is vital to ensure that adequate community services for rehabilitation and carer support services, mirroring those used in the trials, are developed and utilised. One Cochrane review (14 RCTs) found rehabilitation therapy services in the community (home or centre-based) within the first year after stroke reduced the odds of a poor outcome (OR 0.72, 95% CI 0.57–0.92) and improved personal ADL scores (SMD 0.14, 95% CI 0.02–0.25).71 One systematic review (six RCTs and one non-randomised trial) found that home-based rehabilitation may be cheaper than centre-based therapy, but no difference in
effectiveness was found.72 A subsequent systematic review (11 RCTs) found home-based rehabilitation compared with centre-based rehabilitation significantly improved scores on functional measures within six months (MWD 3–6 months 4.07, 95% CI 0.81–7.34) although differences between settings were no longer significant at six months (MWD 0.65, 95% CI –0.50–1.81).73 Home-based therapy may also increase satisfaction of carers. A subsequent Australian RCT of mixed populations (36% of whom were stroke survivors) found home-based rehabilitation had a lower risk of readmission (RR 2.1, 95% CI 1.2–3.9) and lower carer strain than centre-based rehabilitation.74 Home-based rehabilitation is not a common model of care in Australia and access to such services is variable.
A number of other follow-up services after hospital discharge have been evaluated including:
• social work75, 76
• specialist nurse support77–82
• the Stroke Transition After Inpatient Care (STAIR) program83
• stroke family care worker84 • mental health worker85 • workbook-based intervention86
• structured exercise and education program87 • home visits by physician or physiotherapist88 • case management89–92
• stroke family support organisers.93–95
Such services are usually multidimensional and can include emotional and social support, assistance with referral to other services, development of tailored care plans, coordination between stroke specialists and general practitioners and the provision of information to people with stroke and their families/carers. The evidence is difficult to interpret and no one service has been shown to be clearly beneficial. Studies suggest a modest advantage when providing tailored education although no clear functional benefits have been found and further studies are needed. A simple approach often incorporated into other multidimensional interventions is the use of telephone
contact after discharge. One Cochrane review (33 RCTs) failed to demonstrate consistent benefits in a range of non-stroke populations.96 Several stroke studies involving telephone calls as part of complex intervention have also reported conflicting findings.77, 81, 86, 90, 91
Usually stroke survivors will have a specialist medical review in the first few months following discharge from hospital to assess progress and need for additional support or therapy. However, many issues or difficulties may not become evident for a considerable time following a stroke. Access to rehabilitation later in recovery may be needed to prevent deterioration or to realise potential for improvement, especially for those in residential facilities who have made little progress due to co-existing illness. One RCT compared a structured re-assessment system for patients and their carers at six months post stroke with existing care from their GP.97 No difference was found on any outcome.
A systematic review (three RCTs and several observational studies) was unable to make clear conclusions about coordinated care planning involving primary care.62 Coordinated care by the general practitioner may be facilitated by care planning/management items as part of the Medicare funded Enhanced Primary Care program, which provides incentive payments in an effort to improve the care of complex chronic conditions, including stroke.
1.4.1 Community rehabilitation and follow-up services Grade
a) Health services with a stroke unit should provide comprehensive, experienced multidisciplinary
community rehabilitation and adequately resourced support services for stroke survivors and their families/carers. If services such as the multidisciplinary community rehabilitation services and carer support services are available, then early supported discharge should be offered for all stroke patients with mild to moderate disability.
A 68, 69
b) Rehabilitation delivered in the home setting should be offered to all stroke survivors as needed.
where home rehabilitation is unavailable, patients requiring rehabilitation should receive centre- based care.
B 72, 73
c) Contact with and education by trained staff should be offered to all stroke survivors and
families/carers after discharge. C
77, 81
d) Stroke survivors can be managed using a case management model after discharge. If used,
case managers should be able to recognise and manage depression and help to coordinate appropriate interventions via a medical practitioner.
C 89, 92
e) Stroke survivors should have regular and ongoing review by a member of a stroke team,
including at least one specialist medical review. The first review should occur within 3 months, then again at 6 and 12 months post-discharge.
GPP
f) Stroke survivors and their carers/families should be provided with contact information for the
specialist stroke service and a contact person (in the hospital or community) for any post- discharge queries for at least the first year following discharge.
1.4.2 Long-term rehabilitation
Access to ‘top-up services’ where some long-term rehabilitation is provided is often raised by stroke survivors and their families/carers. Limited health resources need to be managed in the most equitable way and ongoing rehabilitation is not feasible unless the stroke survivor has clear and realistic goals. However, current rehabilitation services after the first six months are rarely available although evidence demonstrates further improvements can be made after this time. Often stroke survivors have to pay for ongoing services or try to access generic community exercise programs, for example ‘Heartmoves’, but many other programs exclude people after stroke. The major part of physical recovery following stroke occurs within the first six months but further input can prevent the decline that frequently occurs after stroke. One Cochrane review (14 RCTs) found rehabilitation therapy services in the community (home or centre-based) within the first year after stroke reduces the odds of a poor outcome (OR 0.72, 95% CI 0.57–0.92) and improves personal ADL scores (SMD 0.14, 95% CI 0.02–0.25).71 Another Cochrane review (nine RCTs) that focused on practice of personal activities of daily living (ADL) found that OT targeted at personal ADL increased performance scores (SMD 0.18, 95% CI 0.04– 0.32) and reduced the odds of deterioration or dependency in personal ADL (OR 0.67, 95% CI 0.51–0.87).98 A subsequent cluster RCT 99 carried out in 12 nursing and residential homes found that those in the intervention group receiving OT interventions targeted at improving independence in personal ADLs such as feeding, dressing, toileting, bathing, transferring and mobilising were less likely to deteriorate or die and showed improvements in functional measures compared to controls.
The potential benefits of rehabilitation services more than one year after stroke are less clear. One Cochrane review
(five RCTs) compared therapy-based rehabilitation with conventional care in chronic stroke patients (a study inclusion criterion was that at least 75% of the participants were recruited one year post stroke).100 Overall the evidence was inconclusive as to whether therapy-based rehabilitation intervention one year after stroke was able to influence any relevant patient or carer outcome. Trials varied in design, type of interventions provided, quality and outcomes assessed.
Another Cochrane review (nine RCTs) specifically looking at walking practice in chronic stroke patients found some benefits (improved walking speed, timed up-and-go, endurance) but no change in gait function as measured by the Rivermead Mobility Index or the Stroke Rehabilitation Assessment of Movement.101
Motivation and practical assistance to facilitate regular exercise following stroke should be considered. Strategies such as regular check-ups can be used but the optimum frequency of contact is unclear.102, 103
Community-based allied health practitioners can play a crucial role in monitoring the need for, and encouraging actual participation in, community and exercise activities. A range of factors can substantially limit community participation in appropriate programs, such as access to and costs of appropriate transport, fears related to limited communication ability and awareness of appropriate services and their location. These factors need to be considered when planning or referring to such programs. The GP also plays an important role in appropriately referring people in the months and years after formal rehabilitation has ended, where clear further needs are identified. Younger stroke survivors wishing to return to work often require ongoing support and specific services should be available (see 8.4 Return to work).
1.4.2 Long-term rehabilitation Grade
a) Stroke survivors who have residual impairment at the end of the formal rehabilitation phase of
care should be reviewed annually, usually by the general practitioner or rehabilitation provider to consider whether access to further interventions is needed. A referral for further assessment should be offered for relevant allied health professionals or general rehabilitation services if there are new problems not present when undertaking initial rehabilitation, or if the person’s physical or social environment has changed.
GPP
b) Stroke survivors with residual impairment identified as having further rehabilitation needs
should receive therapy services to set new goals and improve task-orientated activity.
B 104, 105
c) Stroke survivors with confirmed difficulties in performance of personal tasks, instrumental
activities, vocational activities or leisure activities should have a documented management plan updated and initiated to address these issues.
GPP
d) Stroke survivors should be encouraged to participate long-term in appropriate community
exercise programs. C