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Community Reintegration Following Stroke

2016 UPDATE
July, 2016

The Canadian Stroke Best Practice Recommendations for Stroke Rehabilitation, 5th Edition (2015) is published in the International Journal of Stroke (IJS) and available freely online. To access the specific recommendations for Managing Transitions of Care Following Stroke, and all other sections of the Stroke Rehabilitation recommendations, please click on this URL which will take you to the recommendations online in the IJS: http://wso.sagepub.com/content/early/2016/07/21/1747493016660102.full.pdf+html

For the French version of these recommendations, open the appendix at this link: http://wso.sagepub.com/content/suppl/2016/07/21/1747493016660102.DC1/CSBPR_Transitions_of_Stroke_2016_IJS_French_Suppl.pdf

All other supporting information, including performance measures, implementation resources, evidence summaries and references, remain available through www.strokebestpractices.ca, and not through the IJS.  Please click on the appropriate sections on our website below for this additional content.

Rationale

The post-discharge period is consistently reported by stroke survivors and their families to be a stressful and challenging time as they adjust to new roles and potentially altered functional and cognitive abilities of the stroke survivor. Patients and their families often lose the social, emotional, and practical support offered by an inpatient stroke service. Evidence shows that when there is coordination of care beyond the inpatient setting and community support services are provided, patient outcomes and patient and caregiver satisfaction improves.
In children, regular follow-up is necessary to screen for other neurologic sequelae, as 30 percent of pediatric stroke survivors develop concurrent neurologic complications, including seizures, migraine, headaches, and movement disorders that may not manifest in the acute phase of stroke.

The addition of recommendations for long term care are a response to data showing that stroke patients are among the largest patient population receiving long-term care, and their number is steadily increasing worldwide. Stroke patients who transition to long-term care should continue to have rehabilitation and recovery goals and plans that focus on restorative care, maintenance of function, and support for health declines, and be cared for by staff knowledgeable in stroke to maximize outcome goals.

System Implications

Successful reintegration into the community for stroke survivors requires:

  • Education and training in shared decision making skills and strategies for all healthcare professionals, patients, families, and caregivers.
  • Adequate and timely follow-up stroke care in all provinces and territories to support community reintegration of stroke survivors.
  • Assistance for patients, families, and caregivers with an evolving care plan and regular follow-up assessments.
  • Coordination between primary care provider and community agencies for referral to appropriate programs and services for assessment of ability to resume driving.
  • Access to appropriate (public) transportation that supports people with disabilities.
  • Programs that support timely and affordable access to mobility and other assistive devices for patients with stroke.
  • Healthcare professionals and caregivers in the community and long-term care settings with stroke care expertise and access to ongoing education.
  • Ongoing support in the form of community programs, respite care, and educational opportunities available to support caregivers who are balancing personal needs with caregiving responsibilities.
  • Strategies to assist stroke survivors to maintain, enhance, and develop appropriate social support, and to re-engage in desired vocational, social, and recreational activities.
  • Information regarding community resources and processes to access these resources provided to all patients and families.
Performance Measures
  1. Proportion of stroke patients who are discharged from acute care who receive a referral for home care or community supportive services.
  2. Proportion of readmissions to acute care for stroke-related causes following discharge to the community, stratified by type of stroke.
  3. Proportion of stroke patients who return to the emergency department or hospital setting for non-physical issues following stroke (e.g., failure to cope).
  4. Number of stroke patients with documentation that information was given to patient or family on formal and informal educational programs, care after stroke, available services, process to access available services, and services covered by health insurance.
  5. Documentation of shared and collaborative decision-making between healthcare professionals and patients regarding individualized transition plans.
  6. Number of patients referred to a secondary prevention team by the rehabilitation team.
  7. Number of visits to primary care within specified time frames for stroke-related issues.
  8. Number of visits to an emergency department within specified time frames.
  9. Percentage of patients who return home following stroke rehabilitation who require community health services (e.g., home care or respite care).
  10. Length of time from hospital discharge (whether from acute care or inpatient rehabilitation) to initiation of community health services.
  11. Frequency and duration of community health services, stratified by the type of service provided.
  12. Number of readmissions from stroke rehabilitation to acute care for stroke-related causes.
  13. Percentage of patients who return to the community from acute hospital stay or following an inpatient rehabilitation stay who require admission to long-term care or a nursing home within six months or one year.
  14. Median wait time from referral to admission to nursing home, complex continuing care or long-term care facility.
  15. Documentation to indicate that assessment of fitness to drive and related patient counseling was performed.
  16. Number of patients referred for driving assessment by occupational therapist in the community.
  17. Measure of burden of care for family and caregivers of stroke survivors living in the community.

Measurement Notes

  • Performance measure 1: data may be obtained from inpatient chart documentation or community support services documentation. Informal education or education received by primary care providers may be difficult to track unless specific audit tools are developed and implemented in local areas. Also refer to some of the performance measures listed in recommendation 2.1.
  • Emergency department visits can be tracked through the Canadian Institute for Health Information database for participating institutions or hospital records if the patient returns to the emergency department of the hospital where inpatient stay occurred.
  • The Canadian Institute for Health Information holds an administrative data set for complex continuing care and long term care, which uses a minimal data set that is mandated in several regions across Canada. This data set uses the Resident Assessment Instrument tool for assessing functional status. At this time there are no validated comparison models between the Functional Impact Measure and the Resident Assessment Instrument.
  • Hospital readmissions from inpatient rehabilitation to acute care can be obtained from hospital administrative data nationally and provincially.
  • Visits to primary care and indicators related to information and education are difficult to measure. They could be obtained through surveys and standardized audit tools at the local or regional level.
Implementation Resources and Knowledge Transfer Tools

Health Care Provider Information

Patient Information

Summary of the Evidence

Evidence Table and Reference List

The post-discharge period is consistently reported by stroke survivors and their families to be a difficult time of adjustment. Reintegration to former vocational and social life roles is an important goal for the stroke survivor. Using the results from 42 studies published from 1974-2011 Wang et al. (2014) reported positive and negative predictive factors of return to work (RTW) following stroke. Factors that were positively associated with RTW included higher ADL function, a good match between current capabilities and job tasks, strong family support, stroke survivors with realistic goals, availability of vocational services, a flexible work environment, white collar work and disability benefits. Depression and increasing stroke severity were negative factors. The rates of RTW vary widely. In a study including 441 patients, recruited from 20 hospitals, aged 18-64 years, 202 (75%) persons previously employed at the time of stroke had returned to work at one year. Hannerz et al. (2011) reported that of 19,985 persons included in the Danish Occupational Hospitalization Register who were 20-57 years and had sustained a stroke, 62.1% were employed 2 years post stroke. At 4 years following stroke, Trygged et al. (2011) reported that 4,867 (69%) of 7,081 patients, aged 40-59 years had successfully returned to work. Interventions to help improve the odds of successful RTW have not been well studied. Baldwin & Brusco (2011) included the results from 6 studies, which examined rehabilitation programs that included vocational training post stroke. Vocational rehabilitation program were defined as those that included medical, psychological, social, physical and/or occupational rehabilitation activities with the purpose to return to work. Following completion of the programs, the RTW rates varied among the studies from 12% to 49%. The pre-stroke vocation status was reported in 3 studies and ranged from 48% to 100%.

The resumption of pre-stroke social and leisure pursuits is an additional component of reintegration back into pre-stroke life. Interventions to help improve participation following stroke have been examined in several trials. Desrosiers et al. (2007) randomized 62 participants residing in the community who’d had a stroke within the past 5 years and were experiencing some limitations in leisure participation or satisfaction to an intervention or control group. The intervention involved 8-12, 60 minute, weekly education sessions, while participants in the control groups received home visits from a recreational therapist following the same schedule as the intervention group. At the completion of the study, participants in the intervention group reported significantly more time spent in active leisure activities (MD=14.0 minutes, 95% CI 3.2-24.9, p=0.01) and involvement in a greater number of different activities (MD= 2.9, 95% CI 1.1-4.8, p=0.002). Participants in the intervention group had gained significantly more points on the Leisure Satisfaction Scale (MD= 11.9, 95% CI 4.2-19.5, p=0.003) and in the satisfaction of leisure needs and expectations (MD=6.9, 95% CI 1.3-12.6, p=0.02) but not on the satisfaction with use of spare time section (p=0.22). In the Trial of Occupational Therapy & Leisure (TOTAL), Parker et al. (2001) included 465 patients, recruited from 5 hospitals that attended an outpatient clinic within 6 months of stroke onset and were living in the community. Participants were randomized to a leisure therapy group, an ADL group or a control group. The two treatment groups received home-based occupational therapy (OT) for up to 6 months with a minimum of 10, ≥30 minute sessions. At 6 and 12 months there were no significant differences among groups in any of the primary outcomes assessed (General Health Questionnaire, Nottingham Extended ADL, and Nottingham Leisure Questionnaire).

Reports of sexual dysfunction following stroke are common. Among several surveys including small samples, declines in sexual activity have been reported.  Stein et al. (2013) surveyed 35 patients who agreed to participate, out of 268 who were included in a stroke rehabilitation research registry. Of those, 100% of men and 58% of women met the criteria for sexual dysfunction, 42% indicated their sexual functioning was worse following stroke, 94% reported that physical limitations impacted their sexual activity and 58.8% reported feeling less sexually desirable following stroke. Buzzelli et al. (2007) also reported that among 60 patients (83.3%) reported a decline in sexual activity during the first year following stroke. Variables associated with disruption of sexual activity were: fear of relapse, belief that one must be healthy to have a sex life and partner who is “turned off” at the prospect of sexual activity with a “sick person”.  When compared with age-matched norms, Carlsson et al. (2007), reported that life satisfaction, assessed at 1 week and one year following stroke by both patients and spouses using the LiSat-9, was significantly worse. A greater percentage of patients indicated they were not satisfied with: life as a whole (39% vs. 77%, p<0.05), ability in self-care (71% vs. 93%, p<0.05), sex life (34% vs. 58%, p<0.05), leisure time (38% vs. 71%, p<0.05), and vocation (45% vs. 67%, p<0.05). Compared with the norm group, a greater percentage of spouses indicated they were not satisfied with life as a whole (64% vs. 77%, p<0.05), closeness with partner (67% vs. 86%, p<0.05), sex life (41% vs. 58%, p<0.05) and leisure time (52% vs. 71%, p<0.05).

Return to driving is also an important component of community reintegration, given that cognitive impairment and visual field deficits will restrict a patients’ ability to drive safely following stroke. Performance of cognitive measures such as the Trail Making Test and the Snellgrove Maze Test have been used to predict fitness to drive (Barco et al. 2014, Devos et al. 2011). Interventions to help stroke survivors improve driving skills have not been well studied. A Cochrane review (George et al. 2014) included the results from 4 RCTs. The interventions examined included driving simulators (n=2) and skills development using the Dynavision device (n=1) and Useful Field of View training (n=1). No pooled analyses of the primary outcome, performance (pass/fail) during on-road assessment, were possible due to heterogeneity. Based on the results from a single trial, there was no significant difference in the mean on-road scores between groups at 6 months (MD=15.0, 95% CI -4.6 34.6, p=0.13), although participants in the intervention group had significantly higher scores on road sign recognition test (MD=1.69, 95% CI 0.51-2.87, p=0.0051).

Navigating through the post-stroke continuum has been highlighted as a frequent source of dissatisfaction, for patients and informal caregivers, particularly during the transition from hospital to community. Several studies have been conducted to evaluate the benefit of individuals who coordinate access to appropriate services for patients recovering from stroke, who go by many names including stroke navigator, case manager, care coordinator, or system navigator). Manderson et al. (2011) conducted a systematic review including 15 publications, representing 9 RCTs examining system navigation models for older adults living with multiple chronic diseases making transitions across healthcare settings. The services provided included care planning, coordination of care, phone support, home visits, liaison with medical and community services, and patient and caregiver education. In most of the studies, economic, psychosocial and functional benefits were associated with system navigation. While the services of a registered occupational therapist, who functioned as a community stroke navigator, resulted in significant improvements in the mean daily functioning subscale of the Reintegration to Normal Living Index RNLI among 51 patients at the end of four months, (54.1 to 59.3, p=0.02), there were no significant improvements in other outcomes (2-minute walk test, depression outcomes), or any caregiver outcomes (Egan et al. 2010).