ORIGINAL ARTICLE Correlation of Upper Extremity Function to Quality of Life of Primary Caregivers of Ambulatory Stroke Survivors Living in the Community Müfit Akyüz, MD,* Halil Ünalan, MD,w Deniz Palamar, MD,w Alev Demirdali, MD,* Ays¸e Kutlu, MD,z Tuğc¸e Özekli Misirlioğlu, MD,w Pınar Is¸ikc¸i, MD,w Javid Majlesi, MD,y and Ülkü Akarirmak, MDw Objective: To investigate the correlation between function of the involved upper extremity and hand of the ambulatory stroke survivors living in the community independently and quality of life of their primary caregivers. Design: This was a case-control study comparing the Brunnstrom grading of the patients’ involved upper extremity and hand with SF-36 score of the caregivers. Setting: Physical Medicine & Rehabilitation Departments of a University Hospital and a Teaching Rehabilitation Center. Participants: The study included 51 stroke patients and their 51 primary caregivers. Interventions: Not applicable. Main Outcome Measures: Brunnstrom grade of the involved upper extremity and hand of the stroke survivors and SF-36 subscale scores of the primary caregivers. Results: Quality of life of the primary caregivers determined by the SF-36 scoring revealed-high correlation with the Brunnstrom grade of the patient’s upper extremity and hand. Conclusions: The independently walking stroke patients’ upper extremity and hand function is highly correlated with the quality of life of their primary caregivers. Independence in walking may not be an enhancing factor for the quality of life of the primary caregiver. Key Words: caregivers, quality of life, Brunnstrom, stroke, SF-36 (Neurosurg Q 2013;00:000–000) From the *Ankara Physical Medicine and Rehabilitation Education and Research Hospital, Ankara; wDepartment of Physical Medicine and Rehabilitation, Cerrahpas¸a Medical Faculty, Istanbul University; yDepartment of Physical Medicine and Rehabilitation, Medicana International Hospital, Istanbul; and zDepartment of Neurology, School of Medicine, Kocaeli University, Kocaeli Province, Turkey. The authors declare no conflict of interest. Reprints: Javid Majlesi, MD, Yesilkoy Istanbul Caddesi, 37A/5, Bakırkoy, Istanbul 34149, Turkey (e-mail: javidmajlesi@yahoo.co.uk). Copyright r 2013 by Lippincott Williams & Wilkins Neurosurg Q  Volume 00, Number 00, ’’ 2013 S troke, one of the leading causes of adult disability, affects all aspects of the patient life including the physical, behavioral, psychological, and social functioning. This disorder with its high incidence and prevalence rates has a major impact on the society as well. Apparent from the current literature, in the United States nearly 80% of the stroke survivors return to the community.1 Despite its decreasing incidence in the western community, the prevalence of stroke in the population appears to be increasing because of the enhanced survival and a growing elderly population.2 Hemiplegic patients living in the community rely on their family members and especially their primary caregivers and/or spouses support in most of their activities of daily living.3 This burden makes it unlikely that patients’ primary caregivers remain untouched. The primary caregivers of stroke survivors may face difficulties after the stroke event and their discharge trying to adapt to the caregiving role. This role may usually include both physical and psychological support. The fact that especially the primary caregivers are vital members of the rehabilitation team implies that the long-term functional status would be maintained with higher caregiver quality of life (QOL).4 It has been reported that stroke caregivers have to deal with not only difficulties in mobility, self-care, and communication but also cognitive impairment, depression, and personality changes.1 Studies show that stroke caregivers feel a burden1,4,5 and have an ill view of the future6 and may develop clinically significant depression.1,7 The science of Health-Related Quality-of-Life (HRQOL) measurement rapidly evolved within general health and also in all the medical disciplines during the 1980s and 1990s.1,7,8 Short Form-36 (SF-36) was administered as a HRQOL instrument in the present study. SF-36 is a very well-known generic HRQOL instrument and reported to be well validated for use in healthy populations and for clinical research and/or practice in a large number of diseases.9,10 The SF-36 has been administered successfully in general population surveys in most countries on a wide range of adult and elderly patients.10 Despite a substantial increase in the number of published articles in recent years, research on the quality of lives of primary caregivers of stroke survivors living in the www.neurosurgery-quarterly.com | 1 Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. Akyüz et al Neurosurg Q community is relatively limited.1 After a thorough review of the literature, Han and Haley1 reported that few studies have addressed such areas as caregivers physical health, ethnicity, and caregiver interventions. The authors concluded that given the increasing prevalence of stroke and its increasing burden on families to provide care, more research is needed to guide policy and practice in this underestimated topic. We believe that cultural differences is worth considering if one aims a comparative analysis of QOL issues that may exist between different societies. Looking from this point of view and taking into consideration the current literature, the present study was designed to investigate the correlation between the Brunnstrom grade of the involved upper extremity of the independently walking stroke patients and QOL of their primary caregivers. MATERIALS AND METHODS The study was approved by the Ethical Committees of the University Hospital and the Rehabilitation Hospital. All the subjects were informed about the study protocol and all of them signed the informed consent forms. Sixty-five stroke patients living in the community and their caregivers were approached. Fifty-one stroke patients living in the community and their 51 primary caregivers were eligible to be included in the study. The response rate was 100%; there were no drop-outs. The patients had previously taken part in a rehabilitation program at both departments. The rehabilitation program was prescribed and supervised by the authors. The followup evaluations had also been carried out by the authors. In the beginning of the study, all the patients were able to walk independently with or without walking aids. Walking aid would be a cane, tripod, crutches, or walker. All the patients underwent a physical examination with an emphasis on musculoskeletal and neurological tests. The state of independence from a human being during walking was especially observed and recorded. Bruunstrom grading of the upper extremity and the hand was performed by the same experienced physiatrists in both centers. A 6 stage Brunnstrom grading was used for the upper extremity; and a 7 stage Brunnstrom grading was used for the hand. The neglect syndrome was tested using cancellation tests, such as the star cancellation test and the bells cancellation test which have been shown to correlate with other clinical tests of unilateral neglect syndrome indicating construct validity.11–13 Each patient was accompanied by his or her primary caregiver during the assessment. The assessments were carried out by the same physiatrists who were experienced in stroke rehabilitation at each hospital. The inclusion criteria for the patient group were:  Completion of inpatient rehabilitation period and living in the community with his or her primary caregiver.  Being able to walk independently (walking aid if necessary).  Absence of serious cognitive deficits and aphasia.  Absence of neglect syndrome as shown by using cancellation tests, such as the star cancellation test and the bells cancellation test.13 2 | www.neurosurgery-quarterly.com  Volume 00, Number 00, ’’ 2013  Absence of bladder or bowel incontinence. The inclusion criteria for the primary caregivers were:  Living in the community with the stroke survivor as a primary caregiver.  Absence of any systemic or chronic disorder before or after the patient’s stroke.  Have not sought medical help of any type for himself or herself during the last 3 months. The grading was done according to the method described by Brunnstrom.14 Patient’s upper extremity and hand were graded in classes from 1 to 7. Statistical Analysis Descriptive values were calculated. Spearman correlation coefficients were determined between SF-36 parameters of the caregivers and UE and hand Brunnstrom of the patients. Differences between means of the SF-36 parameters of the caregivers of the groups (dominant and nondominant side stroke patients and Brunnstrom subgroups) were assessed with Mann-Whitney U test. A P-value <0.05 was considered statistically significant. RESULTS The mean age of the patient group was 57.35 ± 12.71 years. The mean age of the caregiver group was 48.24 ± 14.76 years. The mean duration after the stroke was 42.61 ± 14.76 months. The patient group consisted of 34 males (66.7%) and 17 females (33.3%). All the patients were right handed. There was no statistically significant difference in SF-36 parameters between the dominant versus nondominant side stroke patients caregivers. The upper extremity and hand gradings of all the patients were found to be at the same stage so the patients were divided into 2 groups:  Group 1—Brunnstrom grade of 3 or less for the upper extremity and hand.  Group 2—Brunnstrom grade of 4 or more for the upper extremity and hand. The 2 patient groups were compared within themselves and with the average values of the SF-36 variables. There was no correlation between the time since stroke and other parameters. Correlation was found between patient age, caregiver age, and role emotional parameter of the SF36. The scores were found to be significantly higher in the vitality (P < 0.005; r = 0.484 and 0.540), mental health (P < 0.005; r = 0.401 and 0.495), social functioning (P < 0.05; r = 0.303 and 0.394), and role emotional (P < 0.05; r = 0.314 and 0.284) of the caregivers of the patients with Brunnstrom grade of Z4 for the upper extremity and hand, respectively (Tables 1 and 2). These findings show higher QOL of caregivers of these patients. DISCUSSION Using the World Health Organization’s International Classification of Function, Disability and Health framework, the American Medical Association defines disability as activity limitations and/or participation r 2013 Lippincott Williams & Wilkins Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. Neurosurg Q  Volume 00, Number 00, ’’ 2013 Correlation of Upper Extremity Function to QOL TABLE 1. The Spearman Correlation Coefficients (r) and P-Values Between Group 2 (Brunnstrom Grades of 4 or More) and Parameters of the SF-36 of the Caregivers PF UE-B r P H-B r P RP BP GH V SF RE MH Av SF-36 0.009 0.152 0.105 0.126 0.484 0.303 0.314 0.401 0.951 0.288 0.463 0.380 0.000 0.031 0.025 0.004 0.333 0.017 0.086 0.333 0.056 0.217 0.540 0.394 0.284 0.495 0.547 0.017 0.696 0.127 0.000 0.004 0.044 0.000 0.434 0.001 Av SF-36 indicates average Short Form-36; BP, bodily pain; GH, general health; H-B, hand Brunnstrom; MH, mental health; PF, physical functioning; RE, role emotional; RP, role physical; SF, social functioning; UE-B, upper extremity Brunnstrom; V, vitality. restrictions in an individual with a health condition, disorder, or disease. Disability denotes all of the following: (a) impairments in body functions and structures, (b) limitations in activity, (c) restriction in participation. Disability is seen as a result of an interaction between a person (with a health condition) and that person’s contextual factors (environmental factors and personal factors). Stroke survivors may have disabilities in several areas of activity such as self-care, ambulation, and communication. Considering the team nature of the rehabilitation that includes the family and the extent to which caregiver QOL is effected, research has been carried out investigating the patient’s family and their QOL.7,15,16 The decision to discharge requires a reliable support system than most of the time may mainly consists of 1 primary caregiver. The presence or absence of this support also is critical in the ultimate place that the patient is discharged to, that is, the patient’s home or nursing TABLE 2. The Means of the SF-36 Parameters of the Caregivers of the Brunnstrom Subgroups PF RP BP GH V SF RE MH Brunnstrom Group N Mean SD P* 1.00 2.00 1.00 2.00 1.00 2.00 1.00 2.00 1.00 2.00 1.00 2.00 1.00 2.00 1.00 2.00 29 22 29 22 29 22 29 22 29 22 29 22 29 22 29 22 75.344 75.681 44.827 64.772 68.241 68.954 50.965 56.772 35.862 56.818 39.655 64.204 32.182 53.026 43.862 61.636 23.065 22.216 23.065 36.725 29.395 22.666 24.78 23.323 19.414 25.706 30.079 36.656 33.902 35.124 19.841 20.827 0.878 0.069 0.893 0.401 0.003 0.037 0.034 0.003 *Mann-Whitney U test. BP indicates bodily pain; GH, general health; MH, mental health; PF, physical functioning; RE, role emotional; RP, role physical; SF, social functioning; V, vitality. r 2013 Lippincott Williams & Wilkins home, from the rehabilitation facility. The need for a primary caregiver may directly affect the discharge decision in countries, for example Turkey, that the government does not have resources to provide nursing home care. The support stroke survivors receive from the family is a critical factor effecting the decision to discharge the patient to home.1,3,17 The social isolation and participation restriction that stroke patients may face are factors that may negatively affect the QOL of family members, especially the primary caregivers.1,7 Some degree of social isolation should be expected for the primary caregiver. The degree of isolation may depend on the extent to which the patient demands care. In addition, the growing pressure toward shorter hospital stay and earlier discharge to community makes stroke caregiving a greater burden than before. This burden may be greater in countries, for example Turkey, that issues of independent or dependent public transport and mobility for the disabled have not been introduced in the structure of the cities. Research aiming to investigate caregivers’ wellbeing has stemmed from the health professional observation of effects of stroke beyond the patient himself. The highly stressful nature of stroke caregiving capable of leading to clinically significant depression in caregivers’ has been reported.1 Research shows that caregivers have lower than optimal level of QOL.1,7 As a result, optimal mental, emotional, and social health and physical functioning of caregivers is a critical factor for the patient to sustain a life in the community. SF-36 Health Survey The SF-36 Health Survey consists of 8 subscales to evaluate different domains of HRQOL such as limitations in physical activity due to health problems, limitations in social activities due to physical or emotional problems, limitations in role activities due to physical health problems, bodily pain, general mental health, limitations in usual role activity due to emotional problems, vitality, and general health perceptions. Higher scores indicate better functioning and well-being.10,18 The SF-36 has been designed for self-administration, telephone administration, or administration during a face-to-face interview with respondents aged 14 years of age and older.10,18 In the present study self-administration method was used. The Turkish version of SF-36 was administered in this study. This version was translated by Güler Fis¸ek, PhD, Professor from Bogazici University (Istanbul, Turkey) which was approved by MOS-Trust (originator of SF-36). This approved version has been tested in a study conducted in Turkey and been found valid and reliable.19 This study shows that upper extremity function is a valid tool for predicting QOL of primary caregivers. The scores in the vitality, mental health, social functioning, and role emotional of the caregivers of the patients with Brunnstrom grade of Z4 were found to be significantly higher (Tables 1 and 2). These findings reflect the impact of rate of recovery of the upper extremity and hand on the QOL of primary caregivers. www.neurosurgery-quarterly.com | 3 Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited. Akyüz et al All the patients in our sample were able to walk independently with or without walking aids. Walking aid would be a cane, tripod, crutches, or walker. Preston et al20 reported that for initially nonambulatory stroke patients managed in a rehabilitation unit, the probability of independent walking was 60% at 3 months, 65% at 6 months, and 91% at 12 months. For patients managed in an acute unit, the probability of independent walking was 39% at 3 months, 69% at 6 months, and 74% at 12 months. They also reported that this information can be used clinically to make decisions about allocation of rehabilitation resources, education of patients and carers, and for discharge planning. Richards and colleagues suggested that walking recovery is a priority goal for most stroke patients, because it widely determines patient’s status with respect to some complications, activities of daily living, and QOL.21,22 Gaining ambulation may be a major goal for a stroke rehabilitation plan, considering the health benefits that achieving the goal delivers to the stroke survivor, such as preventing complications that lack of mobility has on many bodily organs and the musculoskeletal system. However, the results of this study shows that independent walking may not be the only factor that enhances and/or improves the QOL of the primary caregiver. Stroke caregivers suffer from stress, depression, economical burden, lack of social support, and changes in social relationships.23–29 SF-36 participation domains (personal relationships, employment, and recreation) were reported to be the most commonly affected factors in spouses of stroke patients.4 Mental health, vitality, pain, and general health are reported to be the most frequently affected SF-36 domains in caregivers whereas anxiety and depression were found to be very common in stroke survivors.23,25 In a recent study published online, by Doan et al,30 the relationship between disability and HRQOL and caregivers’ burden of patients with upper limb poststroke spasticity were investigated. The authors reported the post hoc data analyses from an open-label study to estimate HRQOL and caregiver burden in 4 problem domains: hygiene, dressing, limb posture, and pain. Main outcome measures in this study were the patient-reported EuroQOl 5 dimensions questionnaire, the Stroke Adapted Sickness Impact Profile, and the caregiver burden. Results showed that in patients with upper limb poststroke spasticity, increasing disability in the hygiene, dressing, and pain domains of the Disability Assessment Scale were associated with diminishing HRQOL. Furthermore, these patients required caregiver assistance proportionally related to the severity of their disability in the hygiene and dressing domains. Our results show that the severity of upper limb disability rated by Brunnstrom grades were in accordance with diminished HRQOL of the caregivers. In contrast, our data show that independent walking may be considered as a criteria for higher level of participation for both the patient and the caregiver; however, the level of this participation may not be considered as the only enhancing factor in health-related QOL of the primary caregivers. 4 | www.neurosurgery-quarterly.com Neurosurg Q  Volume 00, Number 00, ’’ 2013 LIMITATIONS The following limitations should be considered in this study: (1) relatively low study population and (2) insufficient multicenter characteristic. CONCLUSIONS Despite some limitations results of our study showed that the functional status of the involved upper extremity in stroke patients could be a predicting tool regarding the QOL of the primary caregiver. Seeming to be a major achievement for the stroke patient, independence in walking may not be an enhancing factor for the QOL of primary caregiver. REFERENCES 1. Han B, Haley WE. Family caregiving for patients with stroke. Review and analysis. 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Relationship between disability and health-related quality of life and caregiver burden in patients with upper limb poststroke spasticity. PM R. 2012;4:4–10. [Epub December 24, 2011]. www.neurosurgery-quarterly.com | 5 Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.