Barriers to quality of life in patients with multiple sclerosis: a qualitative study

Abstract

Background Multiple sclerosis (MS) is a chronic progressive disease of the central nervous system that affects the patients’ quality of life. This research was conducted with the aim of identifying the barriers of quality of life in patients with MS. Methods This qualitative study was conducted through a conventional content analysis approach. We used the purposeful sampling with maximum diversity in terms of gender, age, education, marital status and employment. Data were collected through semi-structured interviews with 18 patients with multiple sclerosis referred to the MS Association of Isfahan. Interviews were conducted to the point of information saturation. Results Through the content analysis of the interviews, we identified 2 main categories and 11 sub-categories. The main categories include intrapersonal problems (physical problems, psychological disorders, turbulent future, functional limitations, job loss and pennilessness), and environmental barriers (disease and treatment process, fatigue of caregivers, information deficiency about MS, family tensions, lack of social support and fun and entertainment). Conclusions In order to improve the quality of life in these patients, there is a need for attention and practical measures in the field of identified factors. By removing barriers such as providing educational and counseling services to the patients and their families, adapting the urban structure, providing financial support and adequate insurance coverage, the authorities can take measures to ensure patients’ health and improve their quality of life.

Coping Strategies Furthering Post-Traumatic Growth in Multiple Sclerosis: A Longitudinal Study

“…The COPE-28 contains 28 items scored on a Likert scale from 0 ("I have not been doing this at all") to 3 ("I have been doing this a lot"). Test results provide information about 14 subscales: (1)…”

“…Multiple sclerosis (MS) is a chronic neurodegenerative disease impacting a wide spectrum of patients' life domains, as well as physical, psychological, and social well-being [1][2][3]. Unpredictable progression and a highly heterogenous symptomatology pose a great challenge for affected patients, which also may lead to positive psychological changes [4].…”

Can Robotic Gait Training with End Effectors Improve Lower-Limb Functions in Patients Affected by Multiple Sclerosis? Results from a Retrospective Case–Control Study

“…In Italy, the estimated prevalence varies between 122 and 232 cases per 100,000 individuals in mainland regions and Sicily, averaging at 176 cases per 100,000 people [ 3 ]. Generally, the onset of MS occurs in early adulthood, negatively impacting functional outcomes and quality of life [ 4 ]. Symptoms are varied and heterogeneous since they depend on the localization of demyelination plaques throughout the brain [ 5 ].…”

Emily's struggle for dignity: An idiographic case study of a woman with multiple sclerosis

“…Although the course of each phenotype has different clinical severity, MS represents the most common nontraumatic neurological cause of many irreversible physical and mental disabilities among middle-aged adults (Brownlee et al, 2017). This progressive illness can threaten an individual's identity, violate the extrinsic dimension of dignity and create various well-being challenges (Hosseini et al, 2022).…”

“…These aspects often deprive them of their previously fully fledged lives and create difficulties in dealing with the current condition. Physical and psychological problems have a negative impact on daily activities, in many cases affecting the treatment process, and can lead to nonadherence and reduce QoL (Hosseini et al, 2022; Žiaková et al, 2020). However, having a neurological illness such as MS did not necessarily lead to a decrease in perceived satisfaction with life and well‐being (Bassi et al, 2014).…”