Factors Influencing Health-Related Quality of Life of Patients with Multiple Sclerosis and Their Caregivers

Abstract

<b><i>Background:</i></b> Only a few studies have been done focusing on the quality of life (QoL) of patients with multiple sclerosis (MS) as well as their family members. The aim of our research was to determine the factors that influence the QoL of MS patients in advanced stage of disease and their caregivers. <b><i>Methods:</i></b> The sample of the cross-sectional study included 153 patients with MS and 74 caregivers. QoL was measured using the PNDQoL questionnaire (Progressive Neurological Diseases Quality of Life), and the severity of illness was assessed through the following scales: EDSS (Expanded Disability Status scale), PPS (Palliative Performance Scale), and ADL (Activity Daily Living). <b><i>Results:</i></b> The following predictors of the global QoL of the MS patients were identified – age, EDSS, symptom burden, daily care, emotional functioning, and spiritual_nonreligion functioning (<i>R</i><sup>2</sup> = 0.569; <i>F</i> = 32.900; <i>p</i> < 0.001). The following predictors of the global QoL of caregivers were identified – age, emotional functioning, spiritual_nonreligion functioning, patient’s QoL, and feeling of care (<i>R</i><sup>2</sup> = 0.431; <i>F</i> = 18.690; <i>p</i> < 0.001). <b><i>Conclusion:</i></b> Appropriate intervention should be directed particularly at older patients and caregivers who have faced the disease for longer time and at patients without any partner. Supporting the emotional and social well-being and mitigating the burden caused by symptoms of the patients as well as caregivers can improve the QoL of both groups.

Health-Related Quality of Life in Primary Caregivers of People Receiving Palliative Home Care

“…Studies conducted in the Czech Republic and Italy showed that psychological functioning is a predictor of caregivers' quality of life. 26 The social dimension of the HRQOL had a low score (mean, 22; in a score range between 9 and 35). A similar result was obtained by a study conducted in a Colombian region with caregivers of people with neurological disorders (mean, 24; in a score range between 9 and 36).…”

Perceived social support, mental health, and marital satisfaction in multiple sclerosis patients

“…In the same study, it was stated that the impairment in the emotional function was more in divorced individuals, thus it is thought that the marital relationship increases the emotional bond, and reduces the risk of developing emotional or mental problems. In addition, when the social function area was evaluated in the same study, it was stated that the deterioration in social functions of married people was less due to the increase in social support sources 8 …”

“…The prevalence of MS, that is more common in early adulthood—which qualifications such as studying at higher education, getting married, starting a family, having a child, gaining professional knowledge/skills, working in any job, being active in social life, taking responsibility, maintaining interpersonal relationship, being resilient physically and psychologically are expected—causes the biopsychosocial symptom burden and comorbidities experienced by patients and informal caregivers to be devastating. Physical problems that increase over time cause deterioration of patients' body and self‐esteem, sexual dysfunction, change of life plans, deterioration of working life and unemployment, decrease in quality of life, poor psychosocial adjustment to disease, difficulties in performing daily life activities and social activities 8–11,12–19,20 . As the negative consequences of the disease increase, the rate of mental health problems such as depression, anxiety, self‐harm, or suicidal risk/ideation increases 15,19,21–25 …”

“…Providing care for a MS patient causes the social and financial difficulties of the caregiver, as well as the deterioration in personal care activities, ability to cope with problems, mental/physical health, work life, and quality of life. It also increases the care burden and the use of healthcare resources, affects the role and relationships of the patient in family dynamics negatively, reduces marital satisfaction 8,10,11,13, 21, 34–38,46–52 …”

Caregivers of people with multiple sclerosis: care burden, social support and quality of life

“…Asumir el rol de cuidador de la persona con EM, supone enfrentar diferentes circunstancias que lo ponen en riesgo de poseer sobrecarga por el cuidado ofrecido a su familiar, altas demandas de atención para la conservación y atención de la salud y en la calidad de vida en general [5][6][7][8] . Las demandas de cuidado se relacionan con actividades asistenciales hacia su familiar, el suministro de medicamentos, acompañamiento permanente y soporte frente a la discapacidad neurológica a la que persona que asiste 9 .…”