[Factors associated with unemployment or job change due to the treatment of designated intractable diseases].

Objectives: Unemployment or job change due to treatment for a disease is affected by various factors such as disease type, degree of disability, and workplace patient support. This study aimed to clarify the factors affecting the unemployment/job-change rate among workers who had designated intractable diseases.

Methods: A questionnaire survey was administered to 3,210 designated patients with intractable diseases who underwent applications for renewal of medical care subsidies at the Hirakata City Public Health Center during fiscal year 2019 (July-December). Of these patients, 539 workers aged 20-59 years who were employed as regular workers, temporary contract worker/dispatched workers, and part-time workers when they became designated intractable diseases were subjects of the analysis. Unemployment/job-change due to the treatment for a designated intractable disease was treated as an event occurrence, while the absence of unemployment/job-change due to disease at the time of the survey were considered censored cases. The Kaplan-Meier method was used to determine the trend of the unemployment/job-change rate associated with the duration of work. The Cox proportional hazard model was used to examine the relationship between unemployment/job-change and factors such as gender, age at onset, disease groups, activities of daily living, types of employment, experienced workplace supports (e.g., reduced working hours and hourly paid leave), and existence of insoluble medical difficulties at the workplace.

Results: The unemployment/job-change rate due to treatment for designated intractable disease was 19.4%. Significantly independent factors of unemployment/job-change were the following: 50s at onset (compared to those in their 30s, HR = 2.55, 95% CI (1.21-5.37)), requiring outing assistance (compared to going out alone, 2.31 (1.13-4.71)), being a temporary contract worker/dispatched worker (compared to a regular worker, 2.66 (1.20-5.89)), existence of insoluble medical difficulties at workplace (4.15 (2.43-7.09)). Experienced workplace support was not a significant factor in preventing unemployment/job-change.

Conclusions: Age at onset, degree of disability, form of employment, and existence of insoluble medical difficulties at the workplace were significantly associated with unemployment/job change due to treatment for designated intractable diseases. The relationship between workplace patient supports and unemployment/job-change was not clear, but to reduce medical difficulties in the workplace, workplace supports must be expanded. Given that workplace support is not an obligatory effort for employers, it is necessary to establish a system where employers can easily promote workplace support.