Activity, participation, and quality of life 6 months poststroke

1035 Activity, Participation, and Quality of Life 6 Months Poststroke Nancy E. Mayo, PhD, Sharon Wood-Dauphinee, PhD, Robert Côté, MD, FRCP, Liam Durcan, MD, FRCP, Joseph Carlton, MD, FRCP ABSTRACT. Mayo NE, Wood-Dauphinee S, Côté R, Durcan L, Carlton J. Activity, participation, and quality of life 6 months poststroke. Arch Phys Med Rehabil 2002;83:103542. Objectives: To estimate the extent of activity and participation of individuals 6 months poststroke and their influence on health-related quality of life (QOL) and overall QOL, information that would be useful in identifying services that stroke patients would need in the community. Design: Inception cohort study. Setting: Ten acute care hospitals in metropolitan areas of the province of Quebec. Participants: Persons with first-ever stroke, either ischemic or hemorrhagic. In parallel, a population-based sample of community-dwelling individuals without stroke, frequency matched in age and city district, were also recruited. Interventions: Not applicable. Main Outcome Measures: Stroke subjects were interviewed by telephone at 6-month intervals for 2 years of followup. The community-dwelling individuals without stroke were also followed. Results: A total of 434 persons were interviewed approximately 6 months poststroke. Their average age ⫾ standard deviation was 68.4⫾12.5 years; the average age of the 486 controls was 61.7⫾12.4 years. The stroke group scored on average 90.6/100 on the Barthel Index; 39% reported a limitation in functional activities, 54% reported limitations with higher-level activities of daily living such as housework and shopping, and 65% reported restrictions in reintegration into community activities. By using the Medical Outcomes 36-Item Short-Form Health Survey (SF-36), persons with stroke rated their physical health 7 points lower than healthy peers; also, 7 of the 8 subscales of the SF-36 were affected by stroke. Conclusion: Almost 50% of the community-dwelling stroke population lived with sequelae of stroke such that, unless there was a full-time and able-bodied caregiver at home, they needed some form of home help. A large proportion also reported lack of meaningful activity, indicating a need for organized support groups for people with stroke; otherwise, boredom will lead to From the Division of Clinical Epidemiology, Royal Victoria, Montreal (Mayo, Wood-Dauphinee); Departments of Medicine (Mayo, Wood-Dauphinee, Côté, Durcan) and of Epidemiology and Biostatistics (Mayo, Wood-Dauphinee), McGill University; School of Physical and Occupational Therapy, McGill University, Montreal (Mayo, Wood-Dauphinee); Neurology, McGill University Health Centre, Montreal (Côté, Durcan); and Neurology, Jewish General Hospital, Montreal (Carlton), Que, Canada. Supported by National Health Research Development Program (project no. 66055209-302). No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the author(s) or upon any organization with which the author(s) is/are associated. Reprint requests to Nancy E. Mayo, PhD, Division of Clinical Epidemiology, R4.29, Royal Victoria Hospital, 687 Pine Ave W, Montreal, Que H3A 1A1, Canada, e-mail: [email protected]. 0003-9993/02/8308-6867$35.00/0 doi:10.1053/apmr.2002.33984 depression and worsening of function, affect, health status, and QOL. Key Words: Disabled persons; Cerebrovascular accident; Quality of life; Rehabilitation; Treatment outcomes. © 2002 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation ANY ADVANCES HAVE BEEN made in stroke preM vention and management; however, stroke continues to be a prevalent and burdensome condition, particularly among the elderly. Classified as the most disabling chronic disease,1,2 stroke affects not only the individual but also his/her family and society at large. As the population ages, more persons are having strokes and more are surviving the acute phase.3 Consequently, the number of stroke patients returning to the community is growing. This will result in an increase in the number of persons who will seek community-based services to prevent deterioration and also to increase their functional capacities to facilitate their community reintegration, and to promote healthrelated quality of life (HRQOL). Projecting the type and number of services that will be required will depend on the health and on the impairments, disabilities, and handicaps of stroke patients. With this in mind, we began a stroke cohort study in Montreal, Quebec, in 1995 to estimate the impact of stroke on the functioning and quality of life (QOL) of community-based stroke survivors at reentry into the community and over the ensuing 2 years. We also wanted to estimate the impact of stroke apart from the natural effects of aging. Tracking the outcome of stroke demands the systematic follow-up of an inception cohort. There are only a few studies of this type,4-9 and they did not report comprehensive long-term outcomes. In a study7,8 covering 3 health districts in southern England, 639 first-time strokes were registered over a 2-year period. After excluding 9 (1%) persons who were disabled before stroke and 195 (31%) who had died, of the 392 persons assessed at 3 months poststroke, 34 (9%) had severe disability, 60 (15%) had moderate disability, 91 (23%) had mild disability, and 207 (53%) were functionally independent. A subset of this population was available for a 1-year assessment (124 of an original 225; 81 having died before 12mo), and 13 (11%) were found to have moderate to severe disability. A Swedish study9 of a consecutive series of stroke patients found that at 12 months poststroke 73% were still alive. Of these, 81% could walk indoors and the other 19% required wheelchairs; 31% of survivors could not use stairs or manage personal hygiene independently, 48% lacked the mobility to visit with friends, and 60% were unable to walk outdoors. Finally, a British study6 found that at 5-year follow-up two thirds of stroke survivors were limited in performing at least 1 basic activity of daily living (ADL). For example, half of the sample needed help with bathing and with negotiating stairs, but not all of these people had a caregiver at home to help with these activities. In addition, 25% to 50% of this group had stopped such activities as preparing meals, doing housework, shopping, and walking outdoors. Arch Phys Med Rehabil Vol 83, August 2002 1036 QUALITY OF LIFE 6 MONTHS POSTSTROKE, Mayo Although this type of information is helpful in planning services for stroke patients, it focuses almost exclusively on describing physical dysfunctions. What is missing is consideration of the emotional and social problems of the stroke survivor. One construct capturing the broad consequences of stroke is HRQOL, recently defined as “the value assigned to duration of life as modified by impairments, functional status, perceptions and opportunities influenced by disease, injury, treatment and policy.”10 HRQOL measures incorporate physical, mental (emotional, cognitive), social, and role functioning as well as an individual’s perception of health and well-being.11 Even more comprehensive than HRQOL is the concept of QOL, which represents the widest range of human experience encompassing constructs beyond health, including such areas as material well-being, neighborhood safety, spirituality, and the environment.12-15 Enhancing an individual’s QOL as it relates to health is the ultimate goal of treatment and rehabilitation. We do not treat QOL per se but rather focus on the individual components making up the construct. It would, therefore, appear that information about all sequelae of stroke would be more beneficial for planning services than information describing physical disability alone. This article is the first report on our Montreal Stroke Cohort Study and provides information on the status of persons with stroke after their reentry into the community. In conceptualizing this study (before 1995), we used the World Health Organization’s (WHO) International Classification of Impairments, Disabilities and Handicaps16,17 as a framework for considering stroke outcomes. WHO has recently been revising the International Classification of Impairments, Disabilities and Handicaps and the 3 dimensions have been rephrased by using what is referred to as a bipolar (positive/negative) orientation to reflect both capacity and difficulty.16 The positive terms are body structure and function, activity, and participation, whereas the negative terms are impairments, activity limitations, and participation restrictions. The objective of this study was to estimate the extent of activity and participation at 6 months poststroke and the influence of these dimensions on HRQOL and QOL. This information will be useful in identifying community services needed by stroke patients. METHODS The Montreal Stroke Cohort Study was set up to examine the long-term impact of stroke. Persons with stroke, either ischemic or hemorrhagic, were identified from 10 acute care hospitals in the Montreal area. Only patients with confirmed initial stroke were eligible. The diagnosis was based on clinical evidence and further diagnostic procedures that ruled out other diagnoses; 98.5% of participants had a computed tomography scan. Survivors or their caregivers were contacted in person during their hospital stay or by mail after discharge and asked to participate in the study. Persons who agreed were interviewed by telephone at 6-month intervals for 2 years. In parallel, a population-based sample of community-dwelling individuals without stroke, frequency matched by age and city district, were also recruited and followed. This group, sampled through use of randomly generated computerized telephone listings, served to control for the effects of natural aging. Approximately 80% of all eligible stroke patients and 50% of eligible controls who were contacted were enrolled in this study. As is typical when using telephone solicitation to recruit control subjects, the response rate was lower than for the stroke cohort.18 The study was approved by the McGill University Arch Phys Med Rehabil Vol 83, August 2002 Institutional Review Board and by the research ethics committees of all participating hospitals. Measures In this study, basic and instrumental activities of daily living (IADLs) were used to represent activities, and a measure of community reintegration was selected as a proxy for participation. In addition, measures of HRQOL and QOL were included. All measures used in the study are well known and have been extensively tested for reliability and validity for the constructs of interest. These measures represent different but not unrelated constructs that reflect the consequences of disease. They also cover the complete range of possible outcomes, from worst, represented by someone who has difficulty with basic ADL, to the best, represented by someone who can complete strenuous physical activities without difficulty. The measures of HRQOL and QOL capture the physical, mental, and social sequelae of stroke. As shown in table 1, measures of basic ADL and IADL evaluate the need for human assistance, thereby indicating that a limitation translates into a need for a caregiver. Similarly, the measure of participation evaluates the degree to which an individual is involved with roles and relationships common to daily life. A limitation translates into a need for personal assistance or environmental modifications to enhance fulfilment in these areas and hence better reintegration. No single measure reflects the wide range of outcomes after stroke, hence different instruments are needed to portray accurately the outcome of this complex condition. An overview of the measures included in this study is presented in table 1. Additional information was obtained on neurologic deficits, type and side of stroke, and comorbidity. The severity of the initial neurologic deficit was estimated by using a retrospective scoring algorithm for the Canadian Neurological Scale (CNS), which yielded scores from 0 (most severe) to 8.5 (least severe).19 When persons could not answer for themselves, proxies reported on their physical function and ability to perform ADLs. The measures of community reintegration, HRQOL, and QOL were not completed by proxies because of the potential for unreliability of proxy respondents for these constructs.18 Statistical Methods The stroke and control groups were compared on all measures by using t tests for independent samples after adjustment for age and gender through multiple linear regression. The relation of activity limitations and participation restrictions to HRQOL and QOL was assessed only on the stroke group by using linear regression models adjusted for age, gender, type of stroke, cognitive status, and comorbidity. The regression coefficients derived from these models reflect the effect on the outcome measures (HRQOL: physical composite score [PCS], mental composite score [MCS]; QOL: QOL-VAS [visual analog scale]) of a 1-unit change in the predictor variable. Because the instruments that assess activity and participation have different scales of measurement (Barthel Index range, 0 –100; IADL range, 0 –14; Reintegration to Normal Living [RNL] Index range, 0 –22), regression coefficients were standardized to reflect a 1 standard deviation (SD) change in a predictor variable. RESULTS A total of 1321 patients were initially eligible for this study. After excluding the 294 who had died or had been discharged to long-term care, 75% consented and 612 were interviewed. 1037 QUALITY OF LIFE 6 MONTHS POSTSTROKE, Mayo Table 1: Outcome Measures Used in the Montreal Stroke Cohort Study Instrument Scale No. of Items Construct Basic ADLs Barthel Index25 3-point scale 10 items OARS-IADL26 3-point scale 8 items IADL Reintegration to normal community living RNL Index27,28 3-point scale 11 items Cognition MMSE29 10 items SF-3630 Variable scales 36 items QOL-VAS31 HRQOL Physical health Mental health QOL Specific Features Response categories: independent, needs human assistance, cannot do Items: feeding, dressing, toileting, walking, stair climbing Response categories: independent, needs human assistance, cannot do Items: household management (finances, shopping, meal preparation, housework), travel, use of telephone Response categories: does as necessary, does partially, does not do Items: participation in community and family activities, roles, relationships Telephone version of this cognitive screening instrument 8 subscales Summary scales for physical health (PCS) and mental health (MCS) VAS from 0 to 10 Abbreviation: OARS, Older American Resources and Services. Table 2 indicates the number of subjects eligible and the number eventually interviewed. Table 3 compares clinical features of persons interviewed at least once with those who were not interviewed because of death, discharge to long-term care, our inability to contact the remainder, or for other reasons. As expected, the demographics of persons who had died or had been discharged to long-term care differed from those who completed at least 1 interview. They were older and had experienced a more severe stroke, as evidenced by the number with altered consciousness, limb paralysis or paresis, dysphagia, and with lower CNS scores. They also stayed in the hospital longer than persons who were eligible to be interviewed. In contrast, eligible subjects who were not interviewed did not differ greatly from subjects who participated. Notably, the CNS scores reflecting stroke severity were virtually identical (5.3 vs 5.1; SD, 1.8). There were, however, some minor differences: a greater proportion of persons not interviewed were over the age of 80 years and had had a hemorrhagic stroke. Of the 612 persons with at least 1 interview, 434 were interviewed about 6 months poststroke (mean, 7.7⫾1.5mo); the remaining individuals were not available for interview until later. The persons interviewed on time did not differ in initial stroke severity from those interviewed later (mean CNS, 5.3⫾ 1.7 vs 5.2⫾1.9) nor did they differ greatly on any of the measures of outcome (data not shown). Despite the predominance of women among the total group of participants (57.2%, Table 2: Selection of Community-Dwelling Members of the Montreal Stroke Cohort Registered Removed Proportion (%) Eligible Deceased in hospital Discharged to long-term care Approached Refused Deceased, institutionalized or moved before first interview Interviewed at least once 1321 171 123 13 9 327 25 88 7 1027 612 table 3), women were less likely to be interviewed as scheduled (44%, table 4). Table 4 also presents information on age, cognition, and the prevalence of health conditions other than stroke. Despite the attempt to match, the control group was younger than the stroke group (mean age, 61.7⫾12.4y vs 68.4⫾12.5y) and there were more women (67% vs 33%), reflecting the age and gender distribution of older communitydwelling persons willing to participate in such a study. The score on the Mini-Mental State Examination (MMSE) was considerably lower for the stroke group than for the controls (15.5⫾7.9 vs 20.3⫾3.0). The health problems prevalent in the stroke group differed from those in the control group for conditions that are risk factors for stroke (hypertension, cardiac disease, diabetes). The 2 groups were similar as to rates of arthritis and conditions affecting lungs and stomach. Surprisingly, the stroke group had higher rates of cataracts and hearing impairment. Table 5 compares the 2 groups on basic ADLS and IADLs, participation, HRQOL, and QOL. The stroke group represents community-based survivors as manifested by a relatively high score on the Barthel Index (mean, 90.6), although this score was significantly lower than that of the control group. The stroke group also scored significantly lower on the measures of IADL and community reintegration. A score of 5 on the RNL Index indicates that, on average, an individual with stroke had some difficulty with at least 5 everyday community activities or he/she was completely unable to do 2 activities and had some difficulty with one. In comparison, the score on the RNL for healthy peers was 1, significantly lower. The results shown in table 4, using data obtained from the Medical Outcome Study 36-Item Short-Form Health Survey (SF-36), also show that persons with stroke reported significantly poorer HRQOL 6 months poststroke than did their age- and gender-matched healthy peers. Physical health (PCS) of persons with stroke was on average 7 points lower than that of the control group, and mental health (MCS) was 5 points lower. Seven of the 8 scales of the SF-36 were negatively impacted by stroke, and only values for the pain scale were equivalent between the 2 groups. Although table 5 indicates that stroke impacts beyond the ability to do basic ADL, it is important to note that stroke survivors still have difficulty even with basic activities. Table Arch Phys Med Rehabil Vol 83, August 2002 1038 QUALITY OF LIFE 6 MONTHS POSTSTROKE, Mayo Table 3: Characteristics of Persons in the Stroke Cohort Who Were Interviewed at Least Once in Comparison to Those Not Interviewed Mean age ⫾ SD at stroke onset (y) (%) 20–54 55–64 65–79 ⱖ80 Men/women (%) Type of stroke (%) Infarction Hemorrhagic Presenting signs and symptoms (%) Altered consciousness Lower-extremity paresis Upper-extremity paresis Aphasia or dysphasia Confusion Dysphagia Mean ⫾ SD retrospective CNS score* Mean length of stay ⫾ SD in acute care (d) Discharge destination (%) Home Rehabilitation Long-term care Transferred Deceased Interviewed (n⫽612) Not Interviewed (n⫽415) Died or in Long-Term Care (n⫽294) 69.2⫾12.5 14.0 18.0 47.2 20.8 43/57 72.9⫾12.9 7.3 14.8 44.8 33.2 51/49 78.1⫾12.0 4.8 6.8 36.9 51.5 40/59 87.2 12.8 83.2 16.8 73.3 26.7 7.4 69.2 79.8 70.4 23.5 28.3 5.3⫾1.8 15.8⫾14.8 10.0 75.4 78.8 73.5 34.0 30.8 5.1⫾1.8 20.4⫾20.2 57.8 87.5 87.9 71.1 44.8 65.1 3.0⫾1.8 39.8⫾82.9 53.3 44.2 0.2 2.3 0.0 45.2 48.6 41.6 6.3 58.4 * Estimated from chart review according to scoring algorithm in reference ; best score 8.5. 19 6 indicates that 6 months poststroke 39% of survivors still had activity limitations in self-care (bathing, dressing, grooming, feeding) and mobility, with more than 20% reporting difficulty with walking 50m and in negotiating stairs. In contrast, limitations in basic ADL were rare among controls. For higher-level activities, such as those captured by measures of IADLs, only 46% had reached full independence (54% had ⱖ1 limitations). The most problematic activities (requiring assistance) were housework (48%), shopping (36%), traveling short distances (32%), and meal preparation (29%); less than 15% had difficulty using the telephone, handling medications, Table 4: Comparison of Persons 6 Months Poststroke and AgeMatched Controls on Age, Gender, and Prevalent Health Problems Characteristic Mean age ⫾ SD (y) Men/women (%) Prevalent health problems (%) Hypertension Angina Diabetes Arthritis Bronchitis Asthma Emphysema Ulcer disease Impaired hearing Cataracts Glaucoma Stroke Group (n⫽434) 68.8⫾12.5 56/44 57 20 19 36 24 10 4 12 26 24 5 Arch Phys Med Rehabil Vol 83, August 2002 Controls (n⫽486) 61.7⫾12.4 33/67 28 10 7 44 21 11 4 10 16 11 3 or dealing with money. These results are in striking contrast to healthy peers who rarely had limitations in any these activities (ⱕ5%). The concept of participation refers to an individual’s involvement in aspects of life that require interaction with the external environment. On the RNL Index, a measure of participation, only 35% of the stroke cohort was independent in all 11 areas (65% reported restrictions). The areas reported to be most problematic were travel, social activities, recreational activities, moving around the community, and having an important activity to fill the day, for which 36% to 41% reported some difficulty. Participation restrictions were also evident among members of the control group but to a lesser extent (⬍10% reported difficulties). The most frequent limitations and restrictions for persons with stroke patients can be summarized into 4 broad categories: having a meaningful activity, household tasks, travel, and basic ADL. The failure to have a meaningful activity to fill the day, be it social, recreational, or occupational, occurred in 53% of stroke patients compared with 16% in persons without stroke. Ability to carry out daily tasks of housework, meal preparation, and shopping was problematic for 51% of the people with stroke and for only 5% of those without stroke. Traveling any distance within or without the community posed challenges to 50% of stroke patients compared with 8% of control subjects. Finally, performance of even the most basic activities required for community living— bathing, walking short distances, and negotiating stairs—was an issue for 33% of people with stroke and for only 3% of controls. The relationship of activity and participation to indices of health, HRQOL and QOL, is presented in table 7 as standardized regression coefficients. The crude effect of a 1 SD differ- 1039 QUALITY OF LIFE 6 MONTHS POSTSTROKE, Mayo Table 5: Comparison of Persons 6 Months Poststroke and Age-Matched Controls on Indices of Activity, Participation, HRQOL, and QOL Construct (measure) Basic ADL (Barthel Index range, 0–100) IADL (OARS range, 0–14) Community reintegration* (RNL range, 22–0) HRQOL (SF-36)* Physical functioning (range, 0–100) Role–physical (range, 0–100) Bodily pain (range, 0–100) General health (range, 0–100) Vitality (range, 0–100) Social functioning (range, 0–100) Role–emotional (range, 0–100) Mental health (range, 0–100) PCS (range, 0–50) MCS (range, 0–50) QOL* (QOL-VAS) Stroke Group (n⫽434) Mean 90.6 11.6 4.4 63.4 53.0 66.6† 68.9 50.2 75.4 61.2 69.0 43.4 47.1 6.8 SD 17.5 3.2 4.8 29.9 45.0 38.8 20.5 23.5 27.6 46.2 22.6 11.1 11.4 2.0 Controls (n⫽486) Mean 99.3 13.8 0.8 85.0 84.7 68.0† 80.4 68.1 84.8 85.6 78.0 50.0 52.4 7.8 SD 4.0 0.8 2.1 21.0 33.1 35.5 18.2 21.8 21.9 33.1 19.1 9.4 9.3 1.5 * Data missing for 63 to 67 persons with stroke who were unable to respond for themselves. † Not significant. ence in basic ADL (17.5, as in table 5) is to increase the PCS by 7.2 units and the QOL-VAS by 8.3 units; the effect on MCS was negative by 2.3 units. However, when the joint effects of the other measures and important covariates (age, gender, type of stroke, cognitive status, comorbidity) were taken into account, the effect of a 1 SD change in basic ADL was 2.8, ⫺2.3, and 1.6, respectively, for PCS, MCS, and QOL-VAS. Basic ADL no longer had a significant association with QOL-VAS. The negative effect of basic ADL on MCS arises from the construction of the MCS, which was designed by its developers not to correlate with the PCS (see Discussion). Reintegration had the strongest association with the rating of QOL. Other health conditions were significantly associated with all endpoints (data not shown). DISCUSSION The challenge in measuring outcomes for a cohort of people with stroke is to achieve a representative group, even though not all persons can be recruited into the study or followed over time. In this study, persons who died or were admitted to long-term care clearly had more severe strokes than persons who were discharged back to the community, and thus the results of this study pertain only to persons with this potential discharge destination. What is of greater concern is whether the subjects who refused to participate in the study were different from persons who agreed and whether those persons interviewed on schedule were different from those who could only be contacted later in their recovery process. Our results indicate that the interviewed group had strokes of the same severity as those not interviewed, suggesting that the findings here are representative of 6-month community-dwelling stroke survivors. Recruiting population-based controls is also difficult, and only 50% of eligible persons agreed to enter the study; proportionally more women than men were recruited, and overall they were younger than the stroke cohort. This imbalance in age and gender required that these 2 factors be included in the analyses; however, there were such large differences between the stroke group and controls on outcomes that this imbalance in age and gender was relatively unimportant. The control sample was healthier in some aspects than other Canadians in the same age bracket. This conclusion was reached after SF-36 scale scores for the control group were compared with published Canadian norms for ages 55 to 64 years and 65 to 74 years.20 In particular, the Montreal control group scored higher on physical function, role physical, and general health; it was similar (or lower) on other scales. Overall, the summary score reflecting physical health (PCS) was 2 points higher for Montreal controls than the Canadian norms for persons 55 to 75 years old. The better perceived health of the Montreal group matched the extent of prevalent health problems when compared with the health data for Quebec, from a recent survey of the Canadian population.21 In comparison with the general population, our control group had slightly lower rates of hypertension (35% vs 28%) and diabetes (15% vs 7%) but higher rates of arthritis (34% vs 44%), asthma (5% vs 11%), and bronchitis and emphysema (7% vs 21%). It was not unexpected that persons with stroke were more disabled than were their healthy peers. Of more concern was the nature of the limitations experienced by stroke patients and what that might imply about their needs. The major limitation was in performance of household tasks (ie, housework, preparing meals, shopping), and 70% had difficulty with at least 1 of these activities. The nature of these scales are such that difficulty would imply that unless there is a full-time and ablebodied caregiver at home, persons with stroke will need some home help or they will not be able to sustain independent living very long. Interestingly, ability to perform IADLs was associated with measures of HRQOL and QOL. A recent report22 on community-dwelling persons 65 years of age and older noted that the ability to perform these same household-related IADLs independently was highly predictive of the use of home help services, the need for social services, and hospitalization. A similar proportion of patients (70%) had a restriction in traveling within and beyond the community, suggesting the need for access to some form of adaptive transport. Also, 72% of the stroke persons lacked an important and meaningful activity to fill the day, whether it be social, recreational, or occupational. Perhaps organized activity groups for people would fill this need. Also implied is that when their physical and mental condition allows, individuals must be encouraged to return to work and the process facilitated. In fact, if steps for social and occupational reintegration are not taken, boredom Arch Phys Med Rehabil Vol 83, August 2002 1040 QUALITY OF LIFE 6 MONTHS POSTSTROKE, Mayo Table 6: Comparison of Persons 6 Months Poststroke and Age-Matched Controls on Activity Limitations Stroke Group Activity Limitation n Basic ADL (Barthel Index range, 0–100) Any limitation† Feeding Grooming Bathing Dressing Toileting Incontinent: bowel Incontinent: bladder Transfer bed to chair Walk 50m Stairs IADL (OARS range, 0–14) Any limitation† Telephone Travel short distance Shopping Prepare meals Housework Manage medications Handle banking Community reintegration (RNL range, 22–0) Any restriction† Indoor mobility Community mobility Travel long distance Self-care needs met Occupied with important activity Recreational pursuits Social activities Role in family Personal relationships Comfortable with others Life events (n⫽434) 167 68 71 112 68 33 28 53 38 91 102 (n⫽367)* 199 16 117 131 106 176 50 45 (n⫽365)* 239 30 115 168 57 113 132 155 57 23 34 44 Controls % 39 16 17 26 16 8 7 12 9 21 24 54 4 32 36 29 48 14 12 65 8 32 46 16 31 36 43 16 6 9 12 n (n⫽486) 37 7 2 6 3 2 9 14 7 10 8 (n⫽486) 32 2 8 8 8 25 5 4 (n⫽486) 103 5 10 33 7 42 37 45 25 7 13 18 % 8 1 0.4 1 0.6 0.4 2 3 1 2 1 7 0.4 2 2 2 5 1 1 21 1 2 7 1 9 8 9 5 1 3 4 NOTE. Limitation or restriction defined as having any degree of difficulty. * Persons with stroke able to respond for themselves. † Persons with complete data on all items. may lead to depression and worsening of function, affect, HRQOL, and QOL.23 Apart from these types of activities, more than 20% of individuals still needed help with basic mobility, more than 25% with bathing, and more than 50% with household tasks. The community resources these limitations suggest as being needed are not extraordinary nor do they demand highly trained and specialized individuals. Without good community resources, the family will be responsible for meeting basic needs for daily activities, taking over all household tasks, chauffeuring, and organizing entertainment and stimulation. The importance of having adequate resources to meet these needs is underlined by the strong relation between community reintegration and indices of QOL. Persons with stroke who reported fuller participation in community activities also reported better QOL (table 7). In this study, we distinguished between HRQOL and QOL, the latter being the term used to refer to aspects of life beyond health; it may encompass satisfaction with personal relationships, financial resources, work, recreation, and spirituality. Here, we found support for separating HRQOL and QOL. The predictors of the scales used to measure these constructs are different (table 7). Basic ADL is Arch Phys Med Rehabil Vol 83, August 2002 associated with both physical and mental health (HRQOL) but is only weakly associated with QOL. IADL was more strongly associated with overall QOL than with HRQOL. Involvement in community activities as measured by the RNL Index, our measure of participation, had the strongest relationship with overall QOL. For this study, we used the orthogonal weights to create the physical health and mental health summary components of the SF-36. These weights create measures that do not correlate with each other. Thus, an index is created that measures that part of mental health unexplained by physical health. The use of these weights with persons with physical disabilities has been criticized because it is not possible to distinguish mental problems arising from physical incapacity from other sources of mental health problems. The interpretation of the negative regression parameter for the association between basic ADL and MCS (table 7) is that, for the part of mental health unexplained by physical health, there is a negative relation between basic ADL and rating of mental health. Persons with low function rated that aspect of their mental health (not related to physical health) higher than people with more functional capacity. There is much within HRQOL and QOL that is unex- 1041 QUALITY OF LIFE 6 MONTHS POSTSTROKE, Mayo Table 7: Relationship of Activity and Participation to HRQOL and QOL 6 Months Poststroke Univariate HRQOL: PCS Basic ADL (Barthel Index) IADL (OARS) Reintegration (RNL Index) HRQOL: MCS Basic ADL (Barthel Index) IADL (OARS) Reintegration (RNL Index) QOL (QOL-VAS) Basic ADL (Barthel Index) IADL (OARS) Reintegration (RNL Index) Multivariate s␤ SE␤ r2 7.2 6.4 6.2 0.6 0.5 0.5 ⫺2.3 3.1 4.1 8.3 8.7 9.8 s␤ SE␤ 0.27 0.31 0.32 2.8 3.1 2.9 0.9 0.8 0.8 0.7 0.6 0.6 0.02 0.07 0.13 ⫺2.3 1.8 4.4 1.1 1.0 0.9 1.2 1.0 0.4 0.12 0.18 0.24 1.6 4.9 7.3 1.8 1.6 1.5 (r2) P (.42) .003 .0002 .0001 (.25) .04 .06 .0001 (.32) .37 .003 .0001 NOTE. All univariate associations are significant at P⫽.0001, except the association of basic ADL with MCS when P⫽.0016. In multivariate analyses, all variables are adjusted for other model variables plus age, gender, type of stroke, cognitive status and prevalent health problems. Coefficients (s␤) were standardized to 1 SD difference in predictor; for SDs, see table 5: basic ADL, 17.5; IADL, 3.2; RNL, 4.8. RNL scoring has been reversed to be compatible to scoring of other scales, with higher scores indicating better reintegration. Ratio of ␤ to SE␤ is equivalent to a t test. Abbreviation: SE␤, standard error of regression coefficient. plained by the physical sequelae of stroke and age, gender, and comorbidity, both in our study and in others.24 Cognition would be a likely addition but, as measured here with the MMSE, it did not contribute significantly to any model. Mood or emotional status likely contributes but in our study they were incorporated into an outcome (mental health). New studies in the area could include measures of communication, social activities, self-efficacy, anger, motivation, coping styles, and the environment. Difficulties in these areas may be amenable to intervention, and thus services could be provided if data were supportive of their impact. CONCLUSIONS This study showed that almost 50% of the communitydwelling stroke population is living with sequelae of stroke that place them at risk for a diminished activity level and social isolation that can result in further negative health events. Acknowledgments: We thank Claudette Corrigan for her dedication to this project, and the numerous interviewers who kept the participants involved in the study. References 1. Lyons RA, Lo SV, Littlepage BN. Comparative health status of patients with 11 common illnesses in Wales. J Epidemiol Community Health 1994;48:388-90. 2. Fried LP, Ettinger WH, Lind B, Newman AB, Gardin J. Physical disability in older adults: a physiological approach. Cardiovascular Health Study Research Group. J Clin Epidemiol 1994;47:74760. 3. Mayo NE. Hospitalization and case-fatality rates for stroke in Canada from 1982 through 1991. The Canadian collaborative study group of stroke hospitalizations. Stroke 1996;27:1215-20. 4. Jorgensen HS, Nakayama H, Raaschou HO, Olsen TS. Recovery of walking function in stroke patients: the Copenhagen Stroke Study. Arch Phys Med Rehabil 1995;76:27-32. Comment in: Arch Phys Med Rehabil 1995;76:788-9. 5. Pohjasvaara T, Erkinjuntti T, Vataja R, Kaste M. Comparison of stroke features and disability in daily life in patients with ischemic stroke aged 55 to 70 and 71 to 85 years. Stroke 1997;28:729-35. 6. Wilkinson PR, Wolfe CD, Warburton FG, et al. A long-term follow-up of stroke patients. Stroke 1997;28:507-12. 7. Wolfe CD, Taub NA, Woodrow J, Richardson E, Warburton FG, Burney PG. Patterns of acute stroke care in three districts of southern England. J Epidemiol Community Health 1993;47: 144-8. 8. Taub NA, Wolfe CD, Richardson E, Burney PG. Predicting the disability of first-time stroke sufferers at 1 year. 12-month follow-up of a population-based cohort in southeast England. Stroke 1994;25:352-7. 9. Thorngren M, Westling B, Norrving B. Outcome after stroke in patients discharged to independent living. Stroke 1990;21:236-40. 10. Patrick DL, Erickson P. Health status and health policy. New York: Oxford Univ Pr; 1993. 11. Fitzpatrick R, Fletcher A, Gore S, Jones D, Spiegelhalter D, Cox D. Quality of life measures in health care. I: Applications and issues in assessment. BMJ 1992;305(6861):1074-7. 12. Patrick DL, Erickson P. What constitutes quality of life? Concepts and dimensions. Drug Ther Res 1988;18:152-8. 13. Scheer L. Experiences with quality of life comparisons. In: Szalai A, Andrews FM. The quality of life: comparative studies. Beverly Hills (CA): Sage; 1980. p 145-53. 14. Wilson IB, Cleary PD. Linking clinical variables with healthrelated quality of life. A conceptual model of patient outcomes. JAMA 1995;273:59-65. 15. Study protocol for the World Health Organization project to develop a Quality of Life assessment instrument (WHOQOL). Qual Life Res 1993;2:153-9. 16. World Health Organization. ICIDH-2: international classification of functioning and disability. Beta-2 draft. Geneva: WHO; 1999. 17. World Health Organization. International classification of impairments, disabilities, and handicaps: a manual of classification relating to the consequences of disease. Geneva: WHO; 1980. 18. Goldberg MS, Mayo NE, Poitras B, Scott S, Hanley J. The Ste-Justine Adolescent Idiopathic Scoliosis Cohort Study. Part I: Description of the study. Spine 1994;19:1551-61. 19. Goldstein LB, Chilukuri V. Retrospective assessment of initial stroke severity with the Canadian Neurological Scale. Stroke 1997;28:1181-4. 20. Hopman WM, Towheed T, Anastasssiades T, et al. Canadian normative data for the SF-36 health survey. Canadian Multicentre Osteoporosis Study Research Group. CMAJ 2000;163:265-71. 21. Health Reports: How healthy are Canadians? Ottawa (Ont): Health Canada; 1999. Catalog No. 9-119. Arch Phys Med Rehabil Vol 83, August 2002 1042 QUALITY OF LIFE 6 MONTHS POSTSTROKE, Mayo 22. Dodge HH, Belle SH, Moryez RK, Rodriguez E, Lytle M, Ganguli M. Functional and demographic predictors of health and human services utilization: a community-based study [letter]. J Am Geriatr Soc 1999;47:1271-3. 23. Churchill C. Social problems post-stroke. Phys Med Rehabil State Art Rev 1993;7:213-24. 24. Mozes B, Maor Y, Shmueli A. Do we know what global ratings of health-related quality of life measure? Qual Life Res 1999;8:26973. 25. Granger CV, Dewis LS, Peters NC, Sherwood CC, Barrett JE. Stroke rehabilitation: analysis of repeated Barthel index measures. Arch Phys Med Rehabil 1979;60:14-7. 26. McDowell I, Newell C. Measuring health: a guide to rating scales and questionnaires. 2nd ed. New York: Oxford Univ Pr; 1996. Arch Phys Med Rehabil Vol 83, August 2002 27. Wood-Dauphinee S, Williams JI. Reintegration to Normal Living as a proxy to quality of life. J Chronic Dis 1987;40:491-502. 28. Wood-Dauphinee S, Daley K, Berg K. Monitoring status and evaluating outcomes: an overview of rating scales for use with patients who have sustained a stroke. Top Geriatr Rehabil 1994; 10(2):1-20. 29. Shmueli A. Subjective health status and health values in the general population. Med Decis Making 1999;19:122-7. 30. Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992;30:473-83. 31. Spitzer WO, Dobson AJ, Hall J, et al. Measuring the quality of life of cancer patients: a concise QL-index for use by physicians. J Chronic Dis 1981;34:585-97.