Development and validation of the disease - specific problems questionnaire for patients with multiple sclerosis

BACKGROUND: Patients with multiple sclerosis face numerous problems during their lifetime. A self-report measurement of disease - specific problems is required to be developed for patients with multiple sclerosis based on different cultural factors. Accordingly, this can advance our understanding on the disease-specific problems for care planning as well as improving coping ways and quality of life. This study aimed to develop and validate the scale of disease-specific problems of Multiple Sclerosis. METHODS: This was an exploratory sequential mixed method study conducted in three phases. Correspondingly, in the first phase, the concept of disease-specific problems was defined using the content analysis approach in patients with MS. In the second phase, the item pool was generated from the findings of the first phase, and in the third phase, psychometric properties of the scale, including face, content, and construct validity and reliability, were evaluated. RESULTS: After examining both validity and reliability, 28 items were developed in the final questionnaire. As well, by performing the factor analysis, five factors were revealed as follows: physical problems, psychological problems, emotional problems, family problems, and socio-economic problems. Internal consistency and stability of the questionnaire were calculated as 0.82 and 0.90, respectively, indicating an excellent reliability. CONCLUSION: The 28-item questionnaire is valid and reliable for measurement of level of disease - specific problems in Iranian people with MS. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12883-021-02442-y.