Perceived Unmet Rehabilitation Needs 1 Year After Stroke
An Observational Study From the Swedish Stroke Register
Background and Purpose—Met care demands are key aspects in poststroke quality of care. This study aimed to identify baseline predictors and 12-month factors that were associated with perceived unmet rehabilitation needs 1 year poststroke.
Methods—Data on patients who were independent in activities of daily living, hospitalized for acute stroke during 2008 to 2010, and followed up 1 year poststroke through a postal questionnaire were obtained from the Swedish stroke register. Patients reporting fulfilled rehabilitation needs were compared with those with unmet needs (Chi square test).
Results—The study included 37 383 patients, 46% female. At 12 months, 8019 (21.5%) patients reported unmet rehabilitation needs. Compared with those with met rehabilitation needs, patients reporting unmet rehabilitation needs were older (75.4 versus 72.4 years; P<0.0001); a higher proportion was activities of daily living–dependent (59% versus 31.9%; P<0.0001) and institutionalized (24.3% versus 11.5%; P<0.0001) at 12 months. Poststroke depression (32.3% versus 24.9%; P<0.0001) and insufficient pain medication were more common in patients with unmet needs (54.5% versus 32.3%; P<0.0001). Baseline predictors of unmet rehabilitation needs at 12 months in an age-adjusted model were severe stroke (odds ratio [OR]=3.04; confidence interval [CI]: 2.39–3.87), prior stroke (OR=1.63; CI: 1.53–1.75), female sex (OR=1.14; CI: 1.07–1.20), diabetes mellitus (OR=1.24; CI: 1.15–1.32), stroke other than ischemic (OR=1.26; CI: 1.20–1.32), and atrial fibrillation (OR=1.19; CI: 1.12–1.27).
Conclusions—Unfulfilled rehabilitation needs 1 year poststroke are common and associated with high age, dependency, pain, and depression. Long-term follow-up systems should, therefore, be comprehensive and address multiple domains of poststroke problems, rather than having a single-domain focus.
Unmet rehabilitation needs 12 months poststroke have not previously been assessed in a large cohort material with national coverage. The aim of this study, using data from the Swedish stroke register (Riksstroke), was to identify baseline predictors and factors at 12 months that were associated with unmet needs of rehabilitation 1 year after stroke.
Sample and Follow-Up Procedures
Patients >18 years with diagnoses of cerebral infarction (I63), intracerebral hemorrhage (I61), and stroke not specified as ischemic or hemorrhagic (I64) were included. Patients who were dependent in activities of daily living at baseline were excluded. The local ethics approval committee approved the project (2012/453).
Data on vascular risk factors, functional ability and living conditions, medical care, and planned rehabilitation were registered during hospital stay. Patients received a follow-up postal questionnaire at 12 months with questions about living conditions, activities of daily living status, rehabilitation, general health condition, pain, and depression. The patient, next of kin, or caregiver filled out the questionnaire.
The Reaction Level Scale RLS-85 was used as a measure of stroke severity at baseline, with categories of fully awake, somnolent, and comatose. Activities of daily living dependency was defined as dependence in dressing or toileting and indoor mobility. Mortality status at 12 months was assessed through data linkage to the Swedish population register.
The patient-reported outcome measure of the study was perceived unmet rehabilitation needs 1 year poststroke. Rehabilitation was defined as activities or training to improve or maintain the ability to cope with daily life. The register item read: “Have your needs of rehabilitation after stroke been met?” The response alternatives in the questionnaire were: “no need for rehabilitation,” “fulfilled needs,” “partly unmet needs,” “completely unmet needs” and “does not know.” Partly and completely unmet needs were grouped as unmet needs.
SPSS 23.0 was used for all statistical analyses. Baseline data were analyzed using t test for parametric normally distributed variables and Chi square test for categorical variables. Logistic regression was used for the multivariate analysis.
Lost to Follow-Up
Patients lost to follow-up consisted of those who did not return the questionnaire. Furthermore, patients under protected identity, those who moved abroad, or those without valid addresses by other causes never received the questionnaire. Patients who had another stroke within the year after the index stroke event only received the 12-month follow-up questionnaire once.
A study flowchart is presented in Figure I in the online-only Data Supplement. The number of acute stroke events that met the basic inclusion criteria was 64 777. One year after stroke, 52 990 patients had survived. The number of patients who received the 12-month follow-up was 46 277, of whom 37 383 (80.8%) returned the questionnaire, whereas patients who did not return the questionnaire were 8894 (19.2%). A total of 6664 did not receive the 12-month questionnaire (see above Lost to Follow-Up).
Baseline data are presented in Table 1. Baseline factors were compared between those who participated and those lost to follow-up (Table I in the online-only Data Supplement).
Planned Rehabilitation at Discharge
After hospital stay, 21 914 (58.6%) were discharged home without home rehabilitation, and 3162 (8.5%) were discharged to an institution. A small proportion was transferred to another hospital ward (3.7%). One third of the 37 383 patients were discharged to a specified rehabilitation program: home rehabilitation (n=4425, 11.8%), geriatric rehabilitation ward (n=5791, 15.5%), or inpatient stroke rehabilitation facility (n=638, 1.9%).
12-Month Status and Factors Associated With Rehabilitation Needs
At 1 year, 8019 (21.5%) of patients reported unmet needs of rehabilitation, 11 439 (30.5%) reported met needs, 15 623 (41.8%) reported no needs, and 1277 (3.4%) did not know. Data were missing in 2.8% of patients.
Only 2754 (35.3%) of patients with unmet needs filled out the questionnaire alone, whereas 3413 (43.8%) filled it out with help. In the remaining 1629 (21%) cases, a caregiver filled out the form. In patients with met needs, 6644 (59.5%) filled out the form alone, 3363 (30.1%) with help, and 1160 (10.4%) by a caregiver.
Table 2 compares patients with met versus unmet rehabilitation needs. Mean age was higher in the group reporting unmet needs, as were activities of daily living dependency and institutional living at 12 months. Further, use of antidepressant medication, insufficient pain medication, and low self-perceived health were more common in the group with unmet rehabilitation needs.
Patients reporting not having had rehabilitation needs (n=15 623, 41.8%) had a more favorable health status at 12 months compared with those declaring needs for rehabilitation (Table II in the online-only Data Supplement).
Unmet Rehabilitation Needs at 12 Months in Relation to Age
Unmet needs were most common in patients >85 years of age (n=1808; 31.8%) and least common among persons 55 to 69 years old (n=1651; 16.7%). In patients <55 years, the proportion was 18.6% (n=441), and in patients between 70 to 84 years, the proportion was 24.1% (n=4119). Data were missing in 6.2%.
Baseline Predictors of Unmet Rehabilitation Needs at 12 Months
In an age-adjusted multivariate analysis (Table 3) with unmet needs at 12 months as dependent variable, the strongest predictors of unmet rehabilitation needs at 1 year were stroke severity and prior stroke. Other predictors were female sex, living alone, diabetes mellitus, stroke other than ischemic, atrial fibrillation, and smoking.
One in 5 patients in this study reported unmet rehabilitation needs 12 months poststroke, and it was associated with high age, poor functional outcome, pain, and depression. Baseline factors predicting unmet rehabilitation needs were severe stroke, prior stroke, female sex, living alone, intracerebral hemorrhage, and vascular risk factors.
Previous studies have found a similar prevalence of unmet rehabilitation needs poststroke (29%–33%).3,4 Both unmet care and rehabilitation needs are associated with poor functional outcome.3,5–7 Poststroke depression was also associated with unmet needs in some studies.5,6 The present study confirms those findings. Unmet rehabilitation needs may cause or be a causal reflection of depression, but does not necessarily reflect overall disappointment with the healthcare system. Young age was predictive of unmet needs in 2 studies based on in-hospital rehabilitation cohorts.6,7 In our study, which was based on a large unselected stroke cohort, high age was predictive of unmet needs. Previous studies have shown that older patients are less likely to undergo active rehabilitation after stroke,8 as well as women, and patients with severe or prior stroke.9
Study strengths include a large unselected stroke cohort, high participation rate, and adherence to STROBE criteria.10 Limitations include the basic assessment of rehabilitation needs used, which may also be a marker of unmet care demands in general. Furthermore, 20% of patients with unmet needs did not fill out the questionnaires themselves, and their assisting persons might influence responses. Finally, precise quantification of rehabilitation efforts remains a challenge.
Our study supports the implementation of a comprehensive long-term stroke follow-up addressing a broad range of poststroke medical and quality of life–related problems, rather than a single-domain approach.
Guest Editor for this article was Terence J. Quinn, MD.
The online-only Data Supplement is available with this article at http://stroke.ahajournals.org/lookup/suppl/doi:10.1161/STROKEAHA.115.011670/-/DC1.
- Received September 29, 2015.
- Revision received November 17, 2015.
- Accepted November 18, 2015.
- © 2016 American Heart Association, Inc.
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