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NeuroRehabilitation 34 (2014) 313–321 DOI:10.3233/NRE-131037 IOS Press
Caregiver burden, quality of life and walking ability in different disability levels of multiple sclerosis b ¨ ¨ ˙ Ozge Ertekina,∗ , Serkan Ozakbas ¸b and Egemen Idiman a Department b Department
of Physiotherapy and Rehabilitation, Sifa University Faculty of Health Sciences, Izmir, Turkey of Neurology, Dokuz Eyl¨ul University School of Medicine, Izmir, Turkey
Abstract. BACKGROUND: The caregivers of Multiple Sclerosis (MS) individuals are usually burdened with a wide range of MS-related caregiving tasks which may result in damages of their daily life and quality of life (QOL). OBJECTIVES: This study was designed to compare according to the disability level (1) the walking ability, quality of life (QOL), and disease impact of the MS patients (2) and the burden, QOL, self-efficacy and life satisfaction of their caregivers; (3) to determine the relationship between these outcome results, disease duration and caregivers’ age. METHODS: 772 MS patients were recruited, 47 MS patients and their 47 caregivers finished the study. Disability, walking ability, QOL, disease impact of the MS participants; the burden, QOL, self-efficacy, life satisfaction of the caregivers were evaluated. RESULTS: MS Patients with higher disability had significantly worse scores on the MSWS-12, MUSIQOL, MSIS-29, and PDSS (p < 0.01). The caregivers facing with higher disability had significantly worse scores on CBI and CAREQOL (p < 0.01). CONCLUSIONS: The impairments on disability level, walking and QOL of MS patients were related to OQL declines and increased burden of their caregivers. Therefore, it may be important to provide acceptable education and support strategies with individual intervention while defining the needs and goals of the MS patients and their caregivers to improve the rehabilitation success. Keywords: Multiple sclerosis, caregiver, quality of life, burden, disability, self-efficacy, life satisfaction
1. Introduction Individuals with Multiple sclerosis (IwMS) can display in rehabilitation multiple combinations of deficits, such as physical, cognitive, psychosocial, behavioural and environmental problems (Khan et al., 2007). These include impairments (strength, coordination, balance, spasticity, memory, urinary urgency), which result in activity limitation (mobility, self-care, incontinence, pain, cognitive deficits) and restriction in ∗ Address
¨ for correspondence: Ozge Ertekin, PT, PhD, Assist. Prof., Department of Physiotherapy and Rehabilitation, Sifa University Faculty of Health Sciences, Ankara St. No:45 35100 Bornova, Izmir, Turkey. Tel.: +90 232 308 00 00; Mobile: +90 505 527 39 19; Fax: +90 232 441 00 98; E-mail: [email protected].
societal participation (impact on work, driving, family, finances) according to the World Health OrganizationInternational Classification of Functioning, Disability and Health (WHO-ICF) (Khan et al., 2007), resulting in new lifestyle changes for MS patients (Dunn, 2010; Sutliff, 2010). On the other hand, the chronic and disabling nature of MS can have also significant negative effects on family dynamics and, therefore, MS caregivers are at high risk of psychological and even physical morbidity (Dunn, 2010, Khan et al., 2007; Patti et al., 2007, Figved et al., 2007). Family members are usually burdened with a wide range of MS-related caregiving tasks that may disrupt normal family life as well as daily work and quality of life (QOL) (Patti et al., 2007; Alshubaili et al., 2008; Argyriou et al., 2011).
1053-8135/14/$27.50 © 2014 – IOS Press and the authors. All rights reserved
314
¨ Ertekin et al. / Caregiver burden, quality of life and walking ability O.
Mobility loss, one of the most disabling conditions in MS population, may affect a variety of aspects of patients such as independence, employment, mental health and QOL (Dunn, 2010, Ertekin et al., 2012; Aronson, Cleghorn, & Goldenberg, 1996; Finlayson & Cho, 2008; Einarsson et al., 2006; Green & Todd, 2008) at any stage of disease even with mild neurological outcomes (Dunn, 2010; Einarsson et al., 2006). Thus, the critical role of MS caregivers is becoming increasingly recognized. Since research on MS focused primarily on patient QOL, few studies examined the QOL of people caring for patients with this disease (Khan, Pallant, & Brand, 2007; Patti et al., 2007; Figved et al., 2007; Alshubaili et al., 2008; Argyriou et al., 2011; Aronson, 1997; Chipchase & Lincoln, 2001; Aymerich, Guillam´on, & Jovell, 2009; Buchanan & Huang, 2011; Rivera-Navarro et al., 2009). Describing the relationship between MS patients and their caregivers in terms of QOL, burden and disability may assist rehabilitation and support to build new strategies to improve rehabilitation success in combined patient-and caregiver focused approach (Khan, Pallant, & Brand, 2007; Mitchell et al., 2005; Benito-Le´on et al., 2011). The purposes of this study, therefore, were to compare according to the disability level on EDSS (1) the walking ability, QOL and disease impact of the MS patients (2) and the burden, QOL, self-efficacy and life satisfaction of their caregivers; additionally (3) to determine the relationship between these outcome results, disease duration and caregivers’ age.
2. Methods 2.1. Participants A consecutive convenience sample of 772 MS patients referred to the Multiple Sclerosis Outpatient Clinic of Neurology Department of Dokuz Eylul University School of Medicine were enrolled in the study. Patients were admitted onto the study if they satisfied the following criteria: 1) clinically or laboratory definite relapsing remitting, primary progressive or secondary progressive MS according to Poser’s criteria (Poser et al., 1983), 2) aged 18–75 years, 3) EDSS between 2.0 and 6.5, 4) cooperated, and 5) volunteer to join to the study. Patients were excluded if their diagnosis was not clearly established, they were suffering from an acute relapse (in the last 30 days) prior to the first examination, history of cardiovasculer, respiratory, orthopedic,
psychiatric, or other unstable medical comorbidities, and having depression according to Beck Depression Scale. Inclusion criteria for the caregivers were 1) living with the patient at least 6 month and responsible for patient’s care 3) aged ≥18 years 4) volunteer to join to the study. The protocol of the present study was approved by the local ethical committee. The study was approved by the head of the department and passed the ethics committee review of the university. Written informed consent was also received from all participants. The physical therapist administered the evaluation scales. EDSS was performed by the neurologist. 2.2. Outcome measurement Demographic characteristics, socioeconomic status and medical history recorded by questionnaire included age, gender, height, weight, and body mass index, marital status, education, employment, disease duration, disease course, therapy, assistive device use, EDSS group, carer type, duration of caregiving, and comorbidities specified both for the patients and their caregivers. 2.3. Assessment of the MS patients The severity of disability was stated with the Kurtzke Expanded Disability Status Scale (EDSS). It is based on a neurological examination of eight functional systems and the patient’s ability to walk (Kurtzke, 1983). Patients were classified into two groups as low disability (EDSS: 2.0–3.5), and high disability (EDSS 4.0–6.5) (Ertekin et al., 2012). Self-reported mobility impairment was measured with the Patient Determined Disease Step Scale (PDSS), which is classified disability from normal to confine to wheelchair. PDSS was found highly correlated with the EDSS (Hohol, Orav, & Weiner, 1999). Walking ability was measured with the Multiple Sclerosis Walking Scale-12 (MSWS-12) (Hobart et al., 2003). This scale has 12 questions about the limitation degree according to MS in the past two weeks. Higher scores show worse walking ability or more walking difficulty. The MSWS-12 has good evidence for its internal consistency, test– retest reliability, and validity of scores as a measure of walking ability in MS (Hobart et al., 2003, McGuigan & Hutchinson, 2004). Multiple Sclerosis International Quality of Life (MUSIQOL) questionnaire is a multi-dimensional, self-administered and disease-specific QOL scale.
¨ Ertekin et al. / Caregiver burden, quality of life and walking ability O.
Lower scores show higher level of QOL. Significant correlations were found between activity in daily life scores and clinical indices. The validity and reliability of the MUSIQOL were established in patients with MS (Simeoni et al., 2008). The Multiple Sclerosis Impact Scale (MSIS-29) can be used to measure therapeutic outcome in a patient with MS. The higher is the score the greater is the degree of disability (Hobart et al., 2001). 2.4. Assessment of the MS caregivers Zarit Caregiver Burden Interview (CBI) is a selfadministered instrument presents caregivers with a series of 22 questions regarding perceived strain in caregiving. The range of possible CBI scores is 0–88, no or minimal burden (0 to 20 points), mild to moderate burden (21 to 40 points) moderate to severe burden (41 to 60 points), severe burden (61 to 88 points). The validity-reliability operation for Turkey was adapted and the sensitivity and specificity were found high in the Turkish population (Inci & Erdem, 2008). The Caregiver Quality of Life in MS (CAREQOLMS) is the first QOL instrument specific to the MS patients’ caregivers. The scale consists of 24 items, and higher scores reflect worse HRQOL (Benito-Le´on et al., 2011). Generalized Perceived Self-Efficacy Scale (GSES) is understandable and self-reported scale to determine self-efficacy levels of individuals. Turkish version of GSES was found valid and reliable (Erci, 2006). The Satisfaction with Life Scale (SLS) is a wellknown instrument for measuring life satisfaction. The range of possible scores is from minimal satisfaction with life (1–19) to very high satisfaction (21–35) (Waldron-Perrinea et al., 2009). 2.5. Data management and statistical methods All statistical analyses were performed using SPSS the Statistical Package for the Social Sciences Software (version 16). All results are reported as mean and standard deviations (SD). Descriptive statistics were used to summarize demographic and baseline characteristics. Potential baseline differences according to disability status for MSWS-12, MUSIQOL, MSIS-29, and PDSS outcomes of the patients; CBI, CAREQOLMS, GSES and SLS outcomes of the caregivers were analysed using the Mann Whitney U test. All analyses were performed on an intention-to-treat basis. All tests were two-tailed and the level of significance was
315
set at p < 0.05. Pearson’s correlation coefficients were calculated to assess the associations among EDSS, MSWS-12, MUSIQOL, MSIS-29, and PDSS; CBI, CAREQOL-MS, GSES and SLS.
3. Results At the time of recruitment, there were 772 MS patients listed on the Outpatient Clinic of Neurology Department waiting list. Of these, 189 patients (%24.5) were eligible for this study according to the inclusion and exclusion criteria. From the 189 patients, a total of 47 MS patients and their caregivers (n = 47) were available and completed the study process (Fig. 1). The demographic and clinical features of the participants are displayed in Table1. Table 2 shows the comparison of the outcome measures both of the patients and the caregivers classified on the disability status, 36.2% of patients as low disability (n = 17, EDSS: 2.0–3.5), and 63.8% of patients as high disability (n = 30, EDSS: 4.0–6.5). Patients with higher disability had significantly worse scores on the MSWS-12, MUSIQOL, MSIS-29, and PDSS (p < 0.05). Additionally, also caregivers facing with higher disability had significantly worse scores on the CBI (p < 0.001) and CAREQOL (p = 0.002). No significant difference was stated between groups in GSES (p = 0.816) and SLS (p = 0.488) (Table 2). Mann Whitney U test was used to compare female and male caregivers’ outcome measures. Female caregivers had significantly worse scores than males in caregiver burden, QOL and life satisfaction (p < 0.05). Table 3 shows the Pearson correlation between the outcome measures. A significant correlations except from General Self Efficacy Scale were noted between the EDSS, MSWS-12, MUSIQOL, MSIS-29, PDSS, CBI, and CAREQOL-MS scores of patients and caregivers (p < 0.05) (Table 3). However, disease duration did not correlate with the burden, QOL, self-efficacy, and satisfaction scores of the caregivers (p > 0.05). It was stated a negative correlation between CAREQOLMS and age between 60–75 years (p = 0.041), and another correlation was stated between CBI and age lower than 45 years (p = 0.015).
4. Discussion The purposes of this study were to compare according to the disability level on EDSS (1) the walking
316
¨ Ertekin et al. / Caregiver burden, quality of life and walking ability O.
Fig. 1. Flow chart of the study. EDSS, Kurtzke Expanded Disability Scale; PDSS, Patient Determined Disease Step Scale; MSWS-12, Multiple Sclerosis Walking Scale; MUSIQOL, Multiple Sclerosis International Quality of Life; MSIS-29, Multiple Sclerosis Impact Scale; CBI, Caregiver Burden Intervies, CAREQOL-MS, Caregiver Quality Of Life in Multiple Sclerosis, GSES, General Self-Efficacy Scale; SLS, Satisfaction with Life Scale.
ability, quality of life (QOL) and disease impact of the MS patients (2) and the burden, QOL, self-efficacy and life satisfaction of their caregivers; additionally (3) to determine the relationship between these outcome results, disease duration and caregivers’ age. This study highlights the negative effects of disability status both on walking ability, QOL and disease impact in MS individuals, and also the burden and QOL in MS caregivers. Another important finding was that the impairments on disability level, walking and QOL of MS individuals were related to QOL declines and increased burden of their caregivers. Difficulty walking is the primary factor contributing to loss of mobility in MS (Dunn, 2010). In 15 years of MS diagnosis, 50% of the patients will have impairments in walking and 10% are restricted to a wheelchair (Kelleher et al., 2009). It has to be noted that the dependence level will increase in relation with the disability level and loss of activities of daily livings (ADLs) ability with the progression of the disease (Einarsson et al., 2006), and the most affected activities were mobility-related including outside walking, stair
activity, transportation, dressing, and social activities (Sutliff, 2010; Einarsson et al., 2006; Zwibel, 2009). With greater loss of mobility, impairments in ADLs and the need of the assistance of others will increase (Dunn, 2010; Aronson, Cleghorn, & Goldenberg, 1996; Finlayson & Cho, 2008). Limitations in ADLs are related to mobility impairment and independence loss, which will be seen at any stage of disease even with mild neurological outcomes (Dunn, 2010; Einarsson et al., 2006), exerting a substantial toll on caregivers (Corry & While, 2009). In the present study, our patients with higher disability had significantly worse scores on the walking ability, so they had much more difficulty in walking. Therefore, caregivers need to be trained in caring for MS patients, and the progressive loss in walking had to be prevented for prolonging patient independence may help to reduce caregiver burden. While health status and QOL in MS patients have been reported to be lower than those in age- and gendermatched controls, in addition to other chronic disorders (Sutliff, 2010), improving QOL of MS population has become an important goal of researchers and QOL
¨ Ertekin et al. / Caregiver burden, quality of life and walking ability O.
317
Table 1 Sociodemographic and clinical characteristics of participants with MS and their caregivers Characteristics Age in years (Mean (SD), Range) Age in groups (n, %) 10 years Therapy (n, %) Interferon Glatiramer Acetate Azathioprine Education (n, %) 5 years 11 years >11 years Employement (n, %) Retired Employed Others Assistive device use (n, %) None Unilateral Cane /Canadian Assistive device use in years (Mean (SD), Range) Comorbidities (n, %) None Diabetes Hypertension Musculoskeletal pathology Carer type (n, %) Husband/wife Children Parents Duration of caregiving in years (Mean (SD), Range) Caregiver Burden Interview group (n, %) Minimal burden (20) / Dissatisfied (
NeuroRehabilitation 34 (2014) 313–321 DOI:10.3233/NRE-131037 IOS Press
Caregiver burden, quality of life and walking ability in different disability levels of multiple sclerosis b ¨ ¨ ˙ Ozge Ertekina,∗ , Serkan Ozakbas ¸b and Egemen Idiman a Department b Department
of Physiotherapy and Rehabilitation, Sifa University Faculty of Health Sciences, Izmir, Turkey of Neurology, Dokuz Eyl¨ul University School of Medicine, Izmir, Turkey
Abstract. BACKGROUND: The caregivers of Multiple Sclerosis (MS) individuals are usually burdened with a wide range of MS-related caregiving tasks which may result in damages of their daily life and quality of life (QOL). OBJECTIVES: This study was designed to compare according to the disability level (1) the walking ability, quality of life (QOL), and disease impact of the MS patients (2) and the burden, QOL, self-efficacy and life satisfaction of their caregivers; (3) to determine the relationship between these outcome results, disease duration and caregivers’ age. METHODS: 772 MS patients were recruited, 47 MS patients and their 47 caregivers finished the study. Disability, walking ability, QOL, disease impact of the MS participants; the burden, QOL, self-efficacy, life satisfaction of the caregivers were evaluated. RESULTS: MS Patients with higher disability had significantly worse scores on the MSWS-12, MUSIQOL, MSIS-29, and PDSS (p < 0.01). The caregivers facing with higher disability had significantly worse scores on CBI and CAREQOL (p < 0.01). CONCLUSIONS: The impairments on disability level, walking and QOL of MS patients were related to OQL declines and increased burden of their caregivers. Therefore, it may be important to provide acceptable education and support strategies with individual intervention while defining the needs and goals of the MS patients and their caregivers to improve the rehabilitation success. Keywords: Multiple sclerosis, caregiver, quality of life, burden, disability, self-efficacy, life satisfaction
1. Introduction Individuals with Multiple sclerosis (IwMS) can display in rehabilitation multiple combinations of deficits, such as physical, cognitive, psychosocial, behavioural and environmental problems (Khan et al., 2007). These include impairments (strength, coordination, balance, spasticity, memory, urinary urgency), which result in activity limitation (mobility, self-care, incontinence, pain, cognitive deficits) and restriction in ∗ Address
¨ for correspondence: Ozge Ertekin, PT, PhD, Assist. Prof., Department of Physiotherapy and Rehabilitation, Sifa University Faculty of Health Sciences, Ankara St. No:45 35100 Bornova, Izmir, Turkey. Tel.: +90 232 308 00 00; Mobile: +90 505 527 39 19; Fax: +90 232 441 00 98; E-mail: [email protected].
societal participation (impact on work, driving, family, finances) according to the World Health OrganizationInternational Classification of Functioning, Disability and Health (WHO-ICF) (Khan et al., 2007), resulting in new lifestyle changes for MS patients (Dunn, 2010; Sutliff, 2010). On the other hand, the chronic and disabling nature of MS can have also significant negative effects on family dynamics and, therefore, MS caregivers are at high risk of psychological and even physical morbidity (Dunn, 2010, Khan et al., 2007; Patti et al., 2007, Figved et al., 2007). Family members are usually burdened with a wide range of MS-related caregiving tasks that may disrupt normal family life as well as daily work and quality of life (QOL) (Patti et al., 2007; Alshubaili et al., 2008; Argyriou et al., 2011).
1053-8135/14/$27.50 © 2014 – IOS Press and the authors. All rights reserved
314
¨ Ertekin et al. / Caregiver burden, quality of life and walking ability O.
Mobility loss, one of the most disabling conditions in MS population, may affect a variety of aspects of patients such as independence, employment, mental health and QOL (Dunn, 2010, Ertekin et al., 2012; Aronson, Cleghorn, & Goldenberg, 1996; Finlayson & Cho, 2008; Einarsson et al., 2006; Green & Todd, 2008) at any stage of disease even with mild neurological outcomes (Dunn, 2010; Einarsson et al., 2006). Thus, the critical role of MS caregivers is becoming increasingly recognized. Since research on MS focused primarily on patient QOL, few studies examined the QOL of people caring for patients with this disease (Khan, Pallant, & Brand, 2007; Patti et al., 2007; Figved et al., 2007; Alshubaili et al., 2008; Argyriou et al., 2011; Aronson, 1997; Chipchase & Lincoln, 2001; Aymerich, Guillam´on, & Jovell, 2009; Buchanan & Huang, 2011; Rivera-Navarro et al., 2009). Describing the relationship between MS patients and their caregivers in terms of QOL, burden and disability may assist rehabilitation and support to build new strategies to improve rehabilitation success in combined patient-and caregiver focused approach (Khan, Pallant, & Brand, 2007; Mitchell et al., 2005; Benito-Le´on et al., 2011). The purposes of this study, therefore, were to compare according to the disability level on EDSS (1) the walking ability, QOL and disease impact of the MS patients (2) and the burden, QOL, self-efficacy and life satisfaction of their caregivers; additionally (3) to determine the relationship between these outcome results, disease duration and caregivers’ age.
2. Methods 2.1. Participants A consecutive convenience sample of 772 MS patients referred to the Multiple Sclerosis Outpatient Clinic of Neurology Department of Dokuz Eylul University School of Medicine were enrolled in the study. Patients were admitted onto the study if they satisfied the following criteria: 1) clinically or laboratory definite relapsing remitting, primary progressive or secondary progressive MS according to Poser’s criteria (Poser et al., 1983), 2) aged 18–75 years, 3) EDSS between 2.0 and 6.5, 4) cooperated, and 5) volunteer to join to the study. Patients were excluded if their diagnosis was not clearly established, they were suffering from an acute relapse (in the last 30 days) prior to the first examination, history of cardiovasculer, respiratory, orthopedic,
psychiatric, or other unstable medical comorbidities, and having depression according to Beck Depression Scale. Inclusion criteria for the caregivers were 1) living with the patient at least 6 month and responsible for patient’s care 3) aged ≥18 years 4) volunteer to join to the study. The protocol of the present study was approved by the local ethical committee. The study was approved by the head of the department and passed the ethics committee review of the university. Written informed consent was also received from all participants. The physical therapist administered the evaluation scales. EDSS was performed by the neurologist. 2.2. Outcome measurement Demographic characteristics, socioeconomic status and medical history recorded by questionnaire included age, gender, height, weight, and body mass index, marital status, education, employment, disease duration, disease course, therapy, assistive device use, EDSS group, carer type, duration of caregiving, and comorbidities specified both for the patients and their caregivers. 2.3. Assessment of the MS patients The severity of disability was stated with the Kurtzke Expanded Disability Status Scale (EDSS). It is based on a neurological examination of eight functional systems and the patient’s ability to walk (Kurtzke, 1983). Patients were classified into two groups as low disability (EDSS: 2.0–3.5), and high disability (EDSS 4.0–6.5) (Ertekin et al., 2012). Self-reported mobility impairment was measured with the Patient Determined Disease Step Scale (PDSS), which is classified disability from normal to confine to wheelchair. PDSS was found highly correlated with the EDSS (Hohol, Orav, & Weiner, 1999). Walking ability was measured with the Multiple Sclerosis Walking Scale-12 (MSWS-12) (Hobart et al., 2003). This scale has 12 questions about the limitation degree according to MS in the past two weeks. Higher scores show worse walking ability or more walking difficulty. The MSWS-12 has good evidence for its internal consistency, test– retest reliability, and validity of scores as a measure of walking ability in MS (Hobart et al., 2003, McGuigan & Hutchinson, 2004). Multiple Sclerosis International Quality of Life (MUSIQOL) questionnaire is a multi-dimensional, self-administered and disease-specific QOL scale.
¨ Ertekin et al. / Caregiver burden, quality of life and walking ability O.
Lower scores show higher level of QOL. Significant correlations were found between activity in daily life scores and clinical indices. The validity and reliability of the MUSIQOL were established in patients with MS (Simeoni et al., 2008). The Multiple Sclerosis Impact Scale (MSIS-29) can be used to measure therapeutic outcome in a patient with MS. The higher is the score the greater is the degree of disability (Hobart et al., 2001). 2.4. Assessment of the MS caregivers Zarit Caregiver Burden Interview (CBI) is a selfadministered instrument presents caregivers with a series of 22 questions regarding perceived strain in caregiving. The range of possible CBI scores is 0–88, no or minimal burden (0 to 20 points), mild to moderate burden (21 to 40 points) moderate to severe burden (41 to 60 points), severe burden (61 to 88 points). The validity-reliability operation for Turkey was adapted and the sensitivity and specificity were found high in the Turkish population (Inci & Erdem, 2008). The Caregiver Quality of Life in MS (CAREQOLMS) is the first QOL instrument specific to the MS patients’ caregivers. The scale consists of 24 items, and higher scores reflect worse HRQOL (Benito-Le´on et al., 2011). Generalized Perceived Self-Efficacy Scale (GSES) is understandable and self-reported scale to determine self-efficacy levels of individuals. Turkish version of GSES was found valid and reliable (Erci, 2006). The Satisfaction with Life Scale (SLS) is a wellknown instrument for measuring life satisfaction. The range of possible scores is from minimal satisfaction with life (1–19) to very high satisfaction (21–35) (Waldron-Perrinea et al., 2009). 2.5. Data management and statistical methods All statistical analyses were performed using SPSS the Statistical Package for the Social Sciences Software (version 16). All results are reported as mean and standard deviations (SD). Descriptive statistics were used to summarize demographic and baseline characteristics. Potential baseline differences according to disability status for MSWS-12, MUSIQOL, MSIS-29, and PDSS outcomes of the patients; CBI, CAREQOLMS, GSES and SLS outcomes of the caregivers were analysed using the Mann Whitney U test. All analyses were performed on an intention-to-treat basis. All tests were two-tailed and the level of significance was
315
set at p < 0.05. Pearson’s correlation coefficients were calculated to assess the associations among EDSS, MSWS-12, MUSIQOL, MSIS-29, and PDSS; CBI, CAREQOL-MS, GSES and SLS.
3. Results At the time of recruitment, there were 772 MS patients listed on the Outpatient Clinic of Neurology Department waiting list. Of these, 189 patients (%24.5) were eligible for this study according to the inclusion and exclusion criteria. From the 189 patients, a total of 47 MS patients and their caregivers (n = 47) were available and completed the study process (Fig. 1). The demographic and clinical features of the participants are displayed in Table1. Table 2 shows the comparison of the outcome measures both of the patients and the caregivers classified on the disability status, 36.2% of patients as low disability (n = 17, EDSS: 2.0–3.5), and 63.8% of patients as high disability (n = 30, EDSS: 4.0–6.5). Patients with higher disability had significantly worse scores on the MSWS-12, MUSIQOL, MSIS-29, and PDSS (p < 0.05). Additionally, also caregivers facing with higher disability had significantly worse scores on the CBI (p < 0.001) and CAREQOL (p = 0.002). No significant difference was stated between groups in GSES (p = 0.816) and SLS (p = 0.488) (Table 2). Mann Whitney U test was used to compare female and male caregivers’ outcome measures. Female caregivers had significantly worse scores than males in caregiver burden, QOL and life satisfaction (p < 0.05). Table 3 shows the Pearson correlation between the outcome measures. A significant correlations except from General Self Efficacy Scale were noted between the EDSS, MSWS-12, MUSIQOL, MSIS-29, PDSS, CBI, and CAREQOL-MS scores of patients and caregivers (p < 0.05) (Table 3). However, disease duration did not correlate with the burden, QOL, self-efficacy, and satisfaction scores of the caregivers (p > 0.05). It was stated a negative correlation between CAREQOLMS and age between 60–75 years (p = 0.041), and another correlation was stated between CBI and age lower than 45 years (p = 0.015).
4. Discussion The purposes of this study were to compare according to the disability level on EDSS (1) the walking
316
¨ Ertekin et al. / Caregiver burden, quality of life and walking ability O.
Fig. 1. Flow chart of the study. EDSS, Kurtzke Expanded Disability Scale; PDSS, Patient Determined Disease Step Scale; MSWS-12, Multiple Sclerosis Walking Scale; MUSIQOL, Multiple Sclerosis International Quality of Life; MSIS-29, Multiple Sclerosis Impact Scale; CBI, Caregiver Burden Intervies, CAREQOL-MS, Caregiver Quality Of Life in Multiple Sclerosis, GSES, General Self-Efficacy Scale; SLS, Satisfaction with Life Scale.
ability, quality of life (QOL) and disease impact of the MS patients (2) and the burden, QOL, self-efficacy and life satisfaction of their caregivers; additionally (3) to determine the relationship between these outcome results, disease duration and caregivers’ age. This study highlights the negative effects of disability status both on walking ability, QOL and disease impact in MS individuals, and also the burden and QOL in MS caregivers. Another important finding was that the impairments on disability level, walking and QOL of MS individuals were related to QOL declines and increased burden of their caregivers. Difficulty walking is the primary factor contributing to loss of mobility in MS (Dunn, 2010). In 15 years of MS diagnosis, 50% of the patients will have impairments in walking and 10% are restricted to a wheelchair (Kelleher et al., 2009). It has to be noted that the dependence level will increase in relation with the disability level and loss of activities of daily livings (ADLs) ability with the progression of the disease (Einarsson et al., 2006), and the most affected activities were mobility-related including outside walking, stair
activity, transportation, dressing, and social activities (Sutliff, 2010; Einarsson et al., 2006; Zwibel, 2009). With greater loss of mobility, impairments in ADLs and the need of the assistance of others will increase (Dunn, 2010; Aronson, Cleghorn, & Goldenberg, 1996; Finlayson & Cho, 2008). Limitations in ADLs are related to mobility impairment and independence loss, which will be seen at any stage of disease even with mild neurological outcomes (Dunn, 2010; Einarsson et al., 2006), exerting a substantial toll on caregivers (Corry & While, 2009). In the present study, our patients with higher disability had significantly worse scores on the walking ability, so they had much more difficulty in walking. Therefore, caregivers need to be trained in caring for MS patients, and the progressive loss in walking had to be prevented for prolonging patient independence may help to reduce caregiver burden. While health status and QOL in MS patients have been reported to be lower than those in age- and gendermatched controls, in addition to other chronic disorders (Sutliff, 2010), improving QOL of MS population has become an important goal of researchers and QOL
¨ Ertekin et al. / Caregiver burden, quality of life and walking ability O.
317
Table 1 Sociodemographic and clinical characteristics of participants with MS and their caregivers Characteristics Age in years (Mean (SD), Range) Age in groups (n, %) 10 years Therapy (n, %) Interferon Glatiramer Acetate Azathioprine Education (n, %) 5 years 11 years >11 years Employement (n, %) Retired Employed Others Assistive device use (n, %) None Unilateral Cane /Canadian Assistive device use in years (Mean (SD), Range) Comorbidities (n, %) None Diabetes Hypertension Musculoskeletal pathology Carer type (n, %) Husband/wife Children Parents Duration of caregiving in years (Mean (SD), Range) Caregiver Burden Interview group (n, %) Minimal burden (20) / Dissatisfied (
