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Topical Review

Section Editors: Julie Bernhardt, PhD, and Richard D. Zorowitz, MD

Stroke Rehabilitation at Home


Lessons Learned and Ways Forward
Nancy E. Mayo, BSc(PT), MSc, PhD

T he modern hospital evolved from a place to care for the


sick staffed by members of religious orders to a symbol
of rationality and progress fostering medical innovation, pro-
Early Supported Discharge
The evidence for ESD has been systematically reviewed.
The meta-analysis of individual patients’ data7 from 11 tri-
fessional development, science, research, and training.1 As als involving 1597 patients summarized in the Figure found
hospitalization grew to be the norm for seriously ill patients, a reduced risk of death or dependency for the ESD group in
there was also the recognition that not all care had to be insti- comparison to the usual care group (summary odds ratio, 0.79;
tutionalized, and in the 1960s, a practice of offering hospital 95% confidence interval [CI], 0.64–0.97), shortened length
care at home2 for the terminally or chronically ill emerged. of hospital stay by an average of 8 days (95% CI, −4 to −11
By the 1990s, the hospital-at-home became an attractive days), and showing strongly favorable effects on extended
option in response to demand for acute-care hospital beds.3 activities of daily living (odds ratio, 0.12; 95% CI, 0.0–0.25).
In 1997, hospital-at-home was tested for acute stroke patients Table 1 summarizes the results across the different models of
in Italy.4 Published in 2004, 120 patients were randomized ESD presented by Langhorne et al.7 The effect was the great-
from the emergency department to be managed at home or to est when the ESD was provided by a coordinated multidis-
be managed in the hospital as usual. The results showed that ciplinary team and for stroke patients with mild to moderate
functional and neurological outcomes improved similarly in disability.
both groups, but patients managed at home had lower depres- One of the striking features of these trials is that less than
sion scores, fewer complications, and were more likely still half (median, 41%) of patients with stroke were eligible for
be at home at 6 months. With the development of effective ESD (range, 13%–68%)8 because they were ill, discharge
therapies for acute stroke, hospital admission was considered home was not realistic because of the lack of a caregiver, or
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best practice and stroke unit care was shown to be superior the stroke was not disabling enough. The implication is that if
to other models of care.5,6 The hospital-at-home approach ESD is implemented as a policy, similar eligibility criteria as
changed from a focus on avoiding hospitalization to a focus the trials would need to be applied if the same benefit is to be
on early discharge from acute care but with support for on- observed. However, implementing an ESD program to a pro-
going recovery by providing rehabilitation and other services portion of people with low disability would not necessarily be
in a community setting.7 a bad thing as this group has many physical, emotional, cog-
Home rehabilitation for stroke can now be considered under nitive, and participation consequences that have a negative
3 broad rubrics: (1) rehabilitation at home to replace acute effect on quality of life.9 These difficulties are often unrec-
care—the early supported discharge (ESD) model; (2) reha- ognized during hospitalization and may only become evident
bilitation at home to replace institutional rehabilitation; and after returning home. Whether and what kind of intervention
(3) home exercise to prevent deterioration and promote health people with mild stroke need is not fully understood as the
through physical activity. The aim of this review is to sum- trials of ESD did not provide subgroup analyses. A recent
marize what lessons have been learned from the many well- trial providing telephone support post discharge for people
designed clinical trials evaluating the effect of providing ≥1 with mild stroke10 revealed that few availed themselves of this
aspects of stroke rehabilitation in the home and identify prom- support service on their own and even when offered directly,
ising avenues for implementation so that the greatest good there was no effect on outcomes. A more active ESD for peo-
can be achieved for the greatest number of people at the least ple with low disability may be a way forward.
cost. The studies that have been done are heterogeneous as to One way of identifying the full effect of adopting a policy of
purpose, population, timing from stroke, nature of the inter- ESD is to use an outcome measure that can be linked to costs.
ventions, and the type of control group. This heterogeneity These measures fall under the rubric of utility measures,11
provides rich learning material. which are designed to create a single value across different

Received January 14, 2016; final revision received March 17, 2016; accepted March 22, 2016.
From the Division of Clinical Epidemiology, Department of Medicine, School of Physical and Occupational Therapy, Center for Outcomes Research and
Evaluation, McGill University Health Center Research Institute, McGill University, Montreal, Québec, Canada.
Correspondence to Nancy E. Mayo, BSc(PT), MSc, PhD, Division of Clinical Epidemiology, Department of Medicine, School of Physical and
Occupational Therapy, Center for Outcomes Research and Evaluation, McGill University Health Center Research Institute, McGill University, Royal
Victoria Hospital Site, Ross Pavilion R4.29, 687 Pine Ave W, Montreal, Québec, H3A 1A1, Canada. E-mail nancy.mayo@mcgill.ca
(Stroke. 2016;47:1685-1691. DOI: 10.1161/STROKEAHA.116.011309.)
© 2016 American Heart Association, Inc.
Stroke is available at http://stroke.ahajournals.org DOI: 10.1161/STROKEAHA.116.011309

1685
1686  Stroke  June 2016

Figure. The 4 Is.

outcome domains that are weighted by their value in terms of these values yield quality-adjusted life years. With this com-
preference. The most widely used utility measures are generic mon metric, it is possible to link outcomes to cost. A further
meaning that they were developed for use in the general popu- advantage of these measures is that they would meet criteria
lation to identify common health states. Several overviews of for patient-centered outcomes defined as outcomes, beyond
these measures have been published in different contexts,12–14 survival, that matter to patients, symptoms, function, and
but generally, gains in 1 domain are traded off against losses health-related quality of life.11
in others. The best known of these generic utility measures Patel et al18 used the Euroqol-5D to compare stroke unit,
are the Euroqol-5D,15 Short Form-6D16 derived from the Short stroke team, or domiciliary stroke care. Table 2, recast from
Form-36, Health Utilities Index,12 and the Australian devel- this study, shows that stroke unit care was superior in terms
oped Assessment of Quality of Life.17 All have been used in of death/institutionalization avoided as 87% were alive and at
stroke, some extensively. A key feature of these measures is home at follow-up, 12 months after randomization, and quality-
that patients rate themselves on the domains yielding a health adjusted life year gain was 0.297, larger but not significantly
profile. Specific health profiles are valued by members of the so than the other groups. When linked to cost, the home-care
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general population and modeled to produce a single value rep- group was more advantageous, ≈£30 950 per quality-adjusted
resenting the quality of life; when linked to life expectancy, life years gained not surprising as a large proportion of stroke

Table 1.  Summary of Outcomes From 3 Models of ESD


ESD Team Coordination +
Outcome Intervention ESD Team Coordination No ESD Team
Services offered Multidisciplinary team Multidisciplinary team Multidisciplinary team in hospital
that ended at discharge
Coordinated discharge planning Coordinated discharge planning Care provided by a range of
and postdischarge care and postdischarge care community stroke services
Rehabilitation and patient care at Rehabilitation and support at home Not planned at discharge
home by the team provided by existing community-
based agencies
Regular team meetings to Not usually coordinated or No coordinated team
coordinate care multidisciplinary
Care by trained healthcare
volunteers
n studies 9 3 2
Death* 0.69 (0.44–1.07) 0.95 (0.52–1.74) 1.90 (0.90–3.98)
Death or institutionalization* 0.65 (0.45–0.93) 0.75 (0.50–1.14) 1.32 (0.75–2.33)
Death or dependency* 0.71 (0.55–0.91) 0.77 (0.54–1.11) 1.23 (0.79–1.91)
Length of stay −6.84 (−11.20 to −2.49] −10.36 (−15.39 to −5.33) −7.0 (−8.61 to −5.39)
Cost in comparison to control 5 studies: −30% to −4%; 1 study: 1 study: −23% Not reported
15%
ESD indicates early supported discharge.
*Values are odds ratios for team care vs usual care and 95% confidence interval. Values <1.0 indicate that the team approach had a lower odds of
death and other poor outcomes than the usual care group; 95% confidence interval that excluded 1.0 indicates statistical significance.7
Mayo   Rehabilitation at Home    1687

Table 2.  Selected Results at 12 Months From a Trial of 3 main impetus for these trials is that institutional care is expen-
Models of Care for Acute Stroke From the Study by Patel et al18 sive, and if rehabilitation is needed for a period of months, pro-
Stroke Unit Stroke Team Home Care longed institutional care will not be feasible. If some care can
be equivalently carried out in patients’ homes, this would free
n randomized 148 147 140
up room in rehabilitation facilities for those who need this care
Alive and home* 87% 69% 78% venue. Other patients could recover in the comfort of their own
Gain in QALY (SD) 0.297 (0.257) 0.216 (0.370) 0.221 (0.344)) homes, removing the need for travel to and from. However, on
the negative side, the therapy team would need to spend much
Direct costs (SD)* £11 450 (9 745) £9527 (8 664) £6840 (9 353)
time on the road, taking resources away from therapy.
Cost per QALY £38552.19 £44106.48 £30950.23 A 2010 synthesis by Hillier and Inglis-Jassiem24 tested the
gained
hypothesis that home rehabilitation would cost less than clinic-
QALY indicates quality-adjusted life year. based care but would not compromise recovery, essentially a
*P<0.05; QALY as measured by the Euroqol-5D.
noninferiority outcome hypothesis. Eleven trials of single dis-
cipline physical or occupational therapy, or multidisciplinary
unit and team care is for hospital resources. A new genera-
care, involving 1711 adults within 12 months of stroke were
tion of ESD trials are being designed in the context of early
identified. Four of the trials found no difference between home
discharge19,20 with the inclusion of a utility measure19 to permit
and outpatient care; the remaining trials showed greater ben-
this type of cost-effectiveness analysis.
efit for home rehabilitation in terms of cost, satisfaction, and
Given the strong evidence for ESD, the next step is imple-
caregiver strain. A meta-analysis of the results on the Barthel
mentation and a new set of research questions need to be
addressed about the best way to do this. A recent review21 Index (scored out of 20) found that, depending on the time
indicated that inconsistency in values and beliefs from profes- of assessment, the effect in favor of the home group ranged
sionals leads to lower implementation. Apart from a multidis- from 1 to 4 U. The effect of 1 of 20 on the Barthel Index may
ciplinary expert team, success is also based on developing a seem numerically small, but it is clinically relevant indicat-
collaborative approach to rehabilitation between the health- ing a greater difference in independence level on 1 of the 10
care team and the patient and developing problem-solving activities of daily living. As this group scored initially >16 of
skills in all, patient and provider. Specific training in these 20 on the Barthel Index, a difference of 1 is likely to be on a
approaches may be warranted. high-level activities of daily living, such as walking and stairs,
In Canada, Ontario has been actively involved with the indicating an important benefit. The most recent trial included
implementation of ESD since 2012 and through April 2015, in the meta-analysis was published in 2004. Later results are
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and programs have been implemented in 5 sites.22 Ongoing concur.25


research in ESD would involve methods for program evalua- While not designed to test a hypothesis about the effec-
tion, which is the evaluation of the extent to which the goals tiveness of home rehabilitation, the surprising results from
and objectives of a program have been met, including goals the LEAPS study,26 published in 2011, contributes additional
for processes and outcomes. This evaluation should also con- evidence that rehabilitation at home can be as, or even more
sider the processes and outcomes from the experiences of effective, than institutional based care. First, the features of
people receiving the program.21 The work by Nordin et al20 in LEAPS study will be presented, and then some reasons why
summarizing the expectations of patients with respect to ESD home rehabilitation is so powerful will be explored.
provides information on how to move forward with imple- This important study, published in the prestigious New
menting ESD. A key expectation was that the team would pro- England Journal of Medicine, was designed to test the hypoth-
vide support, so patients could manage and feel comfortable esis that, in addition to usual care (physical therapy provided
and safe being at home. Patients had concerns about safety, according to current standards of practice), provision of a
particularly having another stroke out of reach of professional specialized locomotor-training program delivered early (2
help. They expected the rehabilitation team to facilitate the months after stroke) or late (6 months after stroke) would be
recovery of independence and of prestroke abilities, and of more effective in increasing the proportion of study partici-
course, they all hoped for full recovery. They expected to learn pants who had higher functional walking levels at 1 year than
different strategies to deal with these challenges and to create provision of a control intervention that included progressive
a new everyday life. They felt being home would make them strength and balance exercises provided by a physical thera-
feel more capable. pist in patients’ homes starting at 2 months after stroke. After
But the reality is that people face huge changes because of initially screening of 4909 patients, 408 (≈8%) were eventu-
stroke, and it may be a struggle to accommodate their changed ally randomized, 139 to the early training group, 143 to the
selves in an unchanged house, which may not even feel like late training group, and 126 to home rehabilitation. The early
home anymore.23 What better way of doing this than with the training group and the home group started intervention 2
support of an ESD team? months post stroke and the late training group 6 months post
stroke. Ninety-minute training sessions were scheduled for all
Rehabilitation at Home groups, 3× per week for 12 to 16 weeks.
The second set of home rehabilitation interventions was car- There were many unique features of this study. The out-
ried out to ascertain whether rehabilitation at home could come was binary and not average change with 2 responder
replace institutional rehabilitation, inpatient or outpatient. The definitions: (1) for people with severe gait impairment (initial
1688  Stroke  June 2016

walking speed, <0.4 m/s), the critical value to leap over was Both groups made equally modest gains on indicators of
0.4 m/s or faster and (2) for people with initially moderate motor impairment (gait speed, >6 minutes; muscle strength)
gait impairment (gait speed, 0.4 to <0.8 m/s), the leap was to and cardiovascular risk (weekly physical activity, physiologi-
0.8 m/s or faster. Fifty-two percent of people achieved the tar- cal cost of walking) and on physical and mental health. Gains
geted response with no significant differences across groups. in some outcomes were maintained for 1 year. The authors
The home rehabilitation program was offered as an active concluded that a brief period of exercise instruction followed
control and was not conceived of as potent with exercises tar- by home exercise produced changes in physical function that
geting flexibility, range of motion, strength of arms and legs, are retained >1 year as similar to a supervised program. The
coordination, and static and dynamic balance; participants home program is much more feasible.
were also encouraged to walk daily. This approach was better In a study published in 2004, Salbach et al30 found that 6
accepted than was intensive rehabilitation as the attrition rate weeks of supervised walking training resulted in greater gains
was only 3% where as it was 13% and 17% for those in the in the distance walked in 6 minutes (40 m) than did an atten-
early and late locomotor-training groups, respectively. tion controlled intervention involving exercise for the upper
The finding of a similar degree of improvement in the home extremity (5 m). However, further analyses (published as
rehabilitation group as with intensive locomotor-training abstract31) found that, on average, differences post interven-
came as a surprise to the rehabilitation community.27 However, tion were lost by 6 months with only 1 of 3 of people who
the finding that 52% met the targeted response should be improved during the walking intervention maintaining these
celebrated as therapy commenced on average, 64 days post gains to 6 months. A major limitation to this type of interven-
stroke, outside the window of the greatest recovery. This find- tion is that many people eligible for this trial (251/344, 73%)
ing supports the benefit of ongoing therapy for people with opted out of participating because they were not interested or
stroke, therapy of any kind. Another notable finding is that, too tired to attend the clinical setting for therapy.
at 6 months post intervention, the home group and the early To address this, Mayo et al32 subsequently designed a trial
training groups responded more favorably on all secondary of home-based therapy testing 2 types of interventions: a
outcomes than the late training group. These findings support task-oriented exercise and walking program (exercise group;
the widespread effects of therapy and also that there is no need n=44) and a cycling regimen (cycle group; n=43) for a 1-year
to wait to provide therapy for people with stroke, the earlier period. Although the programs were not supervised directly,
the better. both groups were provided with instruction, the program was
The authors concluded that home exercise requires less progressed, and all equipment was supplied. All were visited
expensive equipment, its implementation requires a smaller at home 13× for the 12 months and had regular telephone
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number of staff members, less training is required for physical monitoring. Both groups had elements of repetitive training,
therapists, and patients are more likely to adhere to the regi- but the cycling regimen was simpler with more opportunity
men. Another interpretation is that rehabilitation is so power- for continuous repetitive training, the cycle was a visual
ful it can be done in any venue. reminder to exercise, and removed the dependence on opti-
A way forward with implementing such a program at a mal weather conditions. The hypothesis was that, for a 1-year
population level would be to weigh the travel costs of therapy period, walking capacity would improve in both groups, but
staff against the benefits and select implementation where the cycle group would experience greater increases in walking
travel would be minimized, likely in large urban centers where ability, secondarily to developing better exercise habits, and,
patients would live close to the hospital. People who could be consequently, greater gains in participation and health-related
easily treated at home should be, saving expensive hospital- quality of life. The premise was that no exercise is beneficial
based resources for those who would be more difficult for the if it is not done and adherence to the cycling regimen might be
team to access. greater because of its simplicity. Of the 607 people eligible,
only 87 agreed to enter the trial claiming lack of interest in
Home Exercise Programs exercise as the primary reason. The trial was stopped early
The third form of home-based rehabilitation is providing because of difficulty recruiting and futility. Of those who did
home programs for people with stroke, so they may at least enter, retention was poor with 28 of 43 (65%) randomized to
maintain, if not augment, gains made during formal rehabilita- the cycle group available for the 1-year assessment and 37 of
tion and to reduce cardiovascular risk profile. American Heart 44 (84%) in the exercise group, necessitating data imputation
Association recommend28 that people with stroke perform for the analysis.
aerobic exercises 3 to 7 days per week, as well as strength- There were no remarkable differences between groups on
ening, flexibility, and neuromuscular exercise 2 to 3 days a the primary outcome measure, distance walked in 6 minutes,
week, for their life time. Clearly institutionalizing this ongo- with both groups showing no change, on average. However,
ing intervention is not feasible, and home-based programs, if there was a tendency for the exercise group to have a larger
successful, would be a solution. proportion of responders, people making a change in the dis-
Olney et al29 tested this by comparing the outcomes tance walked in 6 minutes of >20 m: ≈40% versus ≈23%, for
achieved by 2 groups of people with chronic stroke, 1 with exercise and cycle groups, respectively. Secondary outcomes
10 weeks of supervised training (n=38) and 1 group with 1 were analyzed using a global response method. For global
week of supervised training to learn the program followed by physical function, estimated across 5 measures, the odds of
9 weeks of unsupervised training carried out at home (n=36). response disfavored the cycle group but not significantly so
Mayo   Rehabilitation at Home    1689

(odds ratio, 0.65; 95% CI, 0.40–0.1.08); for global partici- implementation of home-based rehabilitation for people who
pation, across 4 measures, the odds of response also signifi- experienced a recent stroke. The home environment enables a
cantly disfavored the cycle group (odds ratio, 0.51; 95% CI, more client-centered approach, encourages patients’ involve-
0.27–0.95). ment in the rehabilitation process, and calls on problem-solving
Adherence was measured as best it can using diaries and skills. In my study of ESD in Montreal,41 the qualitative informa-
personal interviews, and there were no differences between tion volunteered by subjects, family members, and service pro-
groups in the proportion with high adherence (36% versus viders strongly supported that the ESD intervention empowered
33% for exercise versus cycle). Depression affected adher- the subject and his or her family to take charge of the care, and
ence. There was a tendency for greater adherence to result this involved active decision making and concrete action plans.
in greater change in the distance walked in 6 minutes, most A qualitative study by Olofsson et al42 summed up the
marked in the exercise group. The study concluded that the importance of home post stroke: “If only I manage to get
2 programs were equally effective in maintaining walking home I’ll get better.” Although in hospital, the patient with
capacity or equally ineffective in improving it, depending on acute stroke felt that they became a depersonalized object for
whether the view is of a glass half full or half empty. caring measures. However, Tamm43 argues that home rehabili-
This study indicates that providing unsupervised home tation can also be perceived as negative as essentially the pub-
rehabilitation is difficult, but at least a proportion of people, lic sector moves into private space such that the home now has
≈1/3, will adhere and benefit. It remains to identify early on to function as a public workplace, and patients have to ensure
after stroke those most likely to adhere and to benefit and to a good working environment.
ensure that they are offered programs. A challenge will be to Perhaps the greatest barrier to successful home rehabilita-
engage the approximately 2/3 of people who cannot easily tion is the lack of motivation. In a rehabilitation facility, an
adhere to home rehabilitation. unmotivated patient will still receive therapy and is likely to be
These challenges also become opportunities to develop suc- swept along with the crowd for other activities. At home, they
cessful implementation strategies. For those who will likely will not. A recent systematic review of apathy post stroke44
do well, provide them with the tools to do well: (1) clearly estimated a prevalence in the postacute phase of ≈34%. Mayo
written instructions for continued home exercise progression; et al45 in a longitudinal study of apathy post stroke found that
(2) regular follow-up at clinic where progress is actively mea- any degree of apathy had a strong effect on participation in
sured and communicated back to the patient and family; (3) meaningful activities and life’s roles likely explaining in part
provision of self-management tools (4) referral to commu- why 50% of people 6 months post stroke lack for meaning-
nity based-programs that provide opportunities for physical, ful activity.46 Apathy poststroke is under studied, poorly mea-
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social, and personal development. There is emerging evidence sured, and largely ignored in the rehabilitation process.
for these tools.33–36
For those with limited capacity to adhere to home rehabili- Conclusions
tation, professional team input to a home-care team could be Among the lessons learned are that ESD is effective. Another
an option. At the least, support, regular follow-up, and perhaps valuable lesson is that rehabilitation for stroke is so power-
a booster rehabilitation program could keep this group inde- ful that it can be offered in any setting without sophisticated
pendent enough to remain at home. The costs of admission to equipment or technology. We also learned that without super-
long-term care could offset the additional expense of keeping vision only ≈1 of 3 of people with stroke will be able to follow
in touch with this difficult to manage group. or benefit from a home rehabilitation program.
The ways to move forward are to implement what we do
Why Does Rehabilitation at Home know and to develop optimal implementation strategies and
Work or Not? policies. We also need to implement home or community-
What could contribute to this powerful effect of home reha- based rehabilitation programs to those who can and will
bilitation? Even in a research context with therapy as an estab- engage and benefit. We need to identify this group early and
lished protocol, providing therapy in the home environment provide resources, so they can optimize their outcomes. We
supports continuity of care, establishes a relationship that the need to develop solutions for the challenging patients, which
therapist and patient are making a journey together, provides may mean institution-based, not home-based rehabilitation, or
an authentic environment for the experiences of functioning, closer follow-up with home care. We need to address apathy
and encourages patients to develop problem-solving skill.37,38 post stroke and to use advancing knowledge on neuroscience
Jensen39 observed that physical therapists use a great deal of to develop interventions. Those that show promise, an empha-
skilled communication grounded in observation, active listen- sis on goal setting, and the development of problem-solving
ing, and thoughtful questions. It is likely that these skills con- skills could be achieved through self-management programs,
tribute to a successful read of the patient. which are now delivered through media. We have information,
This read is likely to motivate the patients and also facilitate we can interpret this information at the individual and popu-
developing problem-solving skills in a realistic and relevant set- lation level, and we have effective interventions; we are still
ting, the home. Problem solving is emerging as a component of lacking appropriate and focused implementation strategies. I
developing healthy coping strategies for people post stroke.40 suggest that the 4Is—information, interpretation, intervention,
Why else might home rehabilitation work? Siemonsma et and implementation—as shown in the Figure are the lessons
al21 systematically reviewed the determinants of successful of learned and the ways forward.
1690  Stroke  June 2016

Disclosures 22. Cheung D, French E. Early Supported Discharge - Final Report. Ontario
Stroke Network’s Provincial Integrated Working Group. 2015 Ontario Stroke
None. Network’s Web site. http://ontariostrokenetwork.ca/documents/2015/05/
ontario-stroke-networks-provincial-integrated-working-group-early-sup-
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