Peculiarities of using the SF-36 questionnaire in palliative neurological patients

Abstract

Assessment of the quality of life of patients is an important source of information about the severity of their disease, the dynamics of their condition, the effectiveness of medical interventions and medical and social support, and at the same time about the effectiveness of medical and social programs at the local and state levels. The standard SF-36 questionnaire contains questions about the physical activity of patients who do not correspond to the physical status (ability to move independently) of the vast majority of palliative patients. The SF-36 questionnaire was modified to determine the quality of life of neurological patients treated in the Kharkiv hospice in 2022. The analysis of literary sources in the Google Scholar, PubMed and ResearchGate databases showed the absence of already modified questionnaires for palliative patients with a neurological profile, but also confirmed the legitimacy of such a modification. Further research was conducted to determine the minimum number of patients who should be interviewed using a modified questionnaire with a sufficient level of representativeness according to the selected method of calculating the median of the binomial distribution. It was determined that the minimum necessary number of patients to be interviewed is 47 people, each of whom was in treatment for at least 330 days per year. The median of the defined group with a deviation was (45±1) people, which indicates the need to continue in 2023 the survey started in 2022. Expansion of the group of interviewed patients should be carried out taking into account the gender structure of the group (the ratio of men to women should be 1:3), age (at least 90% should be aged 60 and over) and the main palliative diagnosis (90% of the selected patients should be from lesions of the central nervous system, even among cancer patients and patients with HIV/AIDS). The need to continue the survey is indicated in the perspectives of further research. Keywords: quality of life, HRQOL, IQOLA, palliative and hospice care, modification of questionnaires.