Health-related quality of life assessment in people with multiple sclerosis and their family caregivers. A multicenter study in Catalonia (Southern Europe)

Patient Preference and Adherence Dovepress open access to scientific and medical research o R i g i n al r e s e ar c h Patient Preference and Adherence downloaded from https://www.dovepress.com/ by 5.196.129.157 on 13-Jul-2018 For personal use only. Open Access Full Text Article Health-related quality of life assessment in people with multiple sclerosis and their family caregivers. A multicenter study in Catalonia (Southern Europe) This article was published in the following Dove Press journal: Patient Preference and Adherence 27 October 2009 Number of times this article has been viewed Marta Aymerich 1 Imma Guillamón 2 Albert J Jovell 3,4 Medical Sciences Department, University of Girona, Catalonia, Spain; 2Catalan Agency for Health Technology Assessment and Research, Barcelona, Catalonia, Spain; 3Fundació Biblioteca Josep Laporte, Barcelona, Catalonia, Spain; 4Autonomous University of Barcelona, Catalonia, Spain 1 Background Correspondence: Marta Aymerich School of Medicine, University of Girona, Montilivi Campus (M-20), Girona 17071, Catalonia, Spain Tel + 34 972 41 8285 Fax + 34 972 41 9617 Email submit your manuscript | www.dovepress.com Dovepress Powered by TCPDF (www.tcpdf.org) Objectives: To measure the health-related quality of life (HRQoL) of multiple sclerosis (MS) patients and their caregivers, and to assess which factors can best describe HRQoL. Methods: A cross-sectional multicenter study of nine hospitals enrolled MS patients and their caregivers who attended outpatient clinics consecutively. The instruments used were the SF-36 for patients and the SF-12 and GHQ-12 for caregivers. Classification and regression tree analysis was used to analyze the explanatory factors of HRQoL. Results: A total of 705 patients (mean age 40.4 years, median Expanded Disability Status Scale 2.5, 77.8% with relapsing-remitting MS) and 551 caregivers (mean age 45.4 years) participated in the study. MS patients had significantly lower HRQoL than in the general population (physical SF-36: 39.9; 95% confidence interval [CI]: 39.1–40.6; mental SF-36: 44.4; 95% CI: 43.5–45.3). Caregivers also presented lower HRQoL than general population, especially in its mental domain (mental SF-12: 46.4; 95% CI: 45.5–47.3). Moreover, according to GHQ-12, 27% of caregivers presented probable psychological distress. Disability and co-morbidity in patients, and co-morbidity and employment status in caregivers, were the most important explanatory factors of their HRQoL. Conclusions: Not only the HRQoL of patients with MS, but also that of their caregivers, is indeed notably affected. Caregivers’ HRQoL is close to population of chronic illness even that the patients sample has a mild clinical severity and that caregiving role is a usual task in the study context. Keywords: health-related quality of life, multiple sclerosis, caregivers Multiple sclerosis (MS) is a chronic progressive neurological disease characterized by central nervous system demyelization and axonal disruption.1 Its onset is usually in early adulthood and affects 2.5 million persons worldwide.2 MS causes many disabilities such as spastic paresis, ataxia of gait and the extremities, central visual loss, double vision, paresthesia, dysarthria, bladder and sexual disturbances, and fatigue.3 The US Institute of Medicine elaborated a report, commissioned by the National Multiple Sclerosis Society, evaluating research needs in the MS field and their perspectives for the future.4 According to this report, in spite of the great deal of research effort devoted to this illness, there are still unresolved questions, and one of these is: How can we help persons with MS to adapt to their illness, and live their lives as fully as possible? Our challenge is to meaningfully contribute to the literature on this issue because many factors can condition the quality of life of people with MS, and there is a need to determine what these factors are. Deeper knowledge would Patient Preference and Adherence 2009:3 311–321 311 © 2009 Aymerich et al, publisher and licensee Dove Medical Press Ltd. This is an Open Access article which permits unrestricted noncommercial use, provided the original work is properly cited. Patient Preference and Adherence downloaded from https://www.dovepress.com/ by 5.196.129.157 on 13-Jul-2018 For personal use only. Aymerich et al make it possible to develop and enhance interventions able to maintain or improve these patients’ quality of life. Research in quality of life is part of a movement towards patient-centered care, in which the patient’s perspective is taken as the principal reference point, since health-related quality of life (HRQoL) instruments can reveal aspects of illness that are not reflected by standard clinical instruments, and they can measure results that are of major concern to the patient. For the sake of the present study, HRQoL is considered that of perceived overall health, incorporating physical, mental, and social elements. 5 Some studies emphasize the value of HRQoL to predict changes in disability status over a substantial period of time in patients with MS.6 In recent years, different studies have shown the impact of MS on HRQoL, not only in patients,7,8 but also in their caregivers.9 MS-related disabilities have been reported as probable explanations for this impact. Thus, physical disability, fatigue, chronic pain, sexual disturbance and bladder dysfunction have shown their impact in HRQoL.10–14 However, other factors besides disabilities can probably affect HRQoL, and to know amongst them which ones better explain the HRQoL of MS patients could help when setting priorities in treatment programs. Therefore, the aim of the present multicenter study was to measure the HRQoL of MS patients and their family caregivers, as well as to analyze the most important associations between HRQoL and different clinical and sociodemographic characteristics not only of patients, but also of their caregivers, from whose these factors have been poorly studied. Seven million people inhabit the Catalonia region in the northeast of Spain, which is located in a low-latitude climate zone traditionally considered a low prevalence area for MS. A study of HRQoL in this region is valuable because a rising prevalence of MS has been reported (being as high as 58/100,000 inhabitants) and the disease seems to have a relatively milder clinical severity.15 In addition, family social support is more available in Mediterranean countries than in other cultures.16 It would, therefore, be also interesting to see whether, given these characteristics, HRQoL of MS patients and their caregivers is similar to the one reported in other regions. Methods A cross-sectional multicenter study was designed, incorporating nine hospitals from Catalonia. The subjects of the study were MS patients and their caregivers who presented consecutively at outpatient clinics in the 312 Powered by TCPDF (www.tcpdf.org) submit your manus (...truncated)