Health services utilization of Chinese patients with Huntington’s disease: a cross-sectional study

BACKGROUND: Huntington’s disease (HD) is a hereditary disease which could have a large impact on patients’ quality of life. As the neurodegenerative disorders progress, HD patients are expected to regularly take follow-up medical visits for proper treatment. This study aimed to analyze the general situation of health services utilization of Chinese HD patients and factors associated with their adherence to follow-up medical visits. METHODS: We collected data from a questionnaire-based investigation conducted by the Chinese Huntington’s Disease Association. Data from 232 respondents were included to investigate whether they adhered to regular follow-up medical visits and the influencing factors. Based on Andersen’s behavioral model, the independent variables were categorized into predisposing, enabling and need factors. The variables were analyzed by chi-square test and stepwise logistic regression analysis. RESULTS: Thirty-one point nine percent of the respondents had regular follow-up medical visits over the past year. Univariate analysis showed that there were significant differences with 6 factors (P < 0.05), among which, according to logistic regression, 2 enabling factors (reimbursement of health insurance, need for accompanying family members to follow-up visits) and 3 need factors (perceived stage of disease, perceived effectiveness of drugs, self-care ability) were independent influencing factors of follow-up medical behaviors of Chinese HD patients. The predisposing factors investigated here did not play a part in determining patients’ adherence to follow-up visits. CONCLUSIONS: Poor adherence to medical visits among Chinese HD patients is derived from multiple factors, including reimbursement of health insurance, perceived stage of disease and effectiveness of drugs, need for accompanying family members and self-care ability. To promote HD patients’ health services utilization, the improvement of the health insurance system, the enhancement of social support and the development of therapeutic approaches still have a long way to go. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-021-06826-1.