Design and validation of a Questionnaire on the factors influencing self-care behaviors in patients with Multiple sclerosis (QFASMS).

BACKGROUND: Multiple sclerosis (MS) is a chronic inflammatory autoimmune disease of the central nervous system (CNS). Since MS does not have a definitive cure, individuals affected by it need to adapt and coordinate with their chronic illness in order to fulfill their duties and responsibilities. The first step in helping patients to better care for and manage their illness is to engage in self-care behaviors. This study was conducted with the aim of design and validation of a questionnaire on the factors influencing self-care behaviors in patients with Multiple sclerosis. METHODS: This cross-sectional study was conducted on Multiple sclerosis patients in Iran in 2023. The age range of patients varied between 22 and 52 years. Having MS disease, passing one year of the disease duration, living in Mashhad city, having informed consent to participate in the study and not completing the questionnaire were the entry and exit criteria of the study. RESULTS: This study was conducted on 500 patients with multiple sclerosis. Based on the results of psychometrics (face, content and construct validity), the number of questions was reduced from 120 to 47 questions and 73 questions were eliminated. Finally, the questionnaire was approved with 47 questions and 4 subscales of understanding the symptoms of the disease (9 questions), tendency to conscious and targeted care (21 questions), laziness in care (8 questions) and tendency to receive therapy services (9 questions). Cronbach's alpha and McDonald's omega index for all questionnaire questions were 0.877 and 0.881, respectively. CONCLUSIONS: Based on the results of this questionnaire, 47 questions and 4 subscales can be used to measure the factors influencing the adoption of self-care behaviour's in patients with multiple sclerosis.

Explaining the burden of psychosocial factors on the worsening symptoms of MS: a qualitative study of patients' experiences.

BACKGROUND: This study was conducted with the aim of identifying the burden of psychosocial factors on the worsening symptoms of multiple sclerosis. METHODS: This as conducted with a qualitative approach and conventional content analysis among patients with Multiple sclerosis in Mashhad. Data were collected through semi-structured interviews with patients with Multiple sclerosis. Twenty-one patients with Multiple sclerosis were selected through purposive sampling and snowball sampling. The data were analyzed using Graneheim and Lundman method. Guba and Lincoln's criteria were used for evaluating research transferability. The data collection and management was performed by using the MAXQADA 10 software. RESULTS: In explanation of the psychosocial factors of patients with Multiple sclerosis, one category (psychosocial tensions) and three subcategories of stress (physical symptoms, emotional symptoms, and behavioral symptoms), agitation (family disorder, treatment-related concerns, and social relationship concerns), and stigmatization (social stigma and internalized stigma) were extracted. CONCLUSION: The results of this study show that patients with Multiple sclerosis are faced with concerns such as stress, agitation, and fear of stigma, and need support and understanding from the family and community to overcome these concerns. Society must base its health policies on addressing the challenges faced by patients. Accordingly, the authors argue that health policies, and consequently, healthcare systems, need to address patients' ongoing challenges as a priority in caring for patients with Multiple sclerosis.