Socio-economic burden in patients with rare diseases in Hong Kong

Abstract

Background: The socio-economic burden of rare diseases is extremely important for healthcare planning but difficult to estimate. In Hong Kong, one in 67 people is living with at least one rare disease. The burden of rare diseases comprises an economic dimension. Costs of rare diseases can be incurred directly through healthcare expenditure, but also through non-healthcare formal and informal costs and indirectly through productivity and opportunities lost. The socio-economic burden of rare diseases is unknown in Hong Kong. The study aims to fill in this literature gap to guide policy makers for healthcare planning. Methods: The Client Service Receipt Inventory for the rare disease population (CSRI-Ra) was used to collect direct and indirect cost-related data in the rare disease population in Hong Kong. It includes five key areas: socio-demographic characteristics, community support, employment and earnings, service and resource utilisation record, and household and carer support. The CSRI-Ra was distributed to independent rare disease patients and carers via multiple rare disease organisations and patient groups. Rare diseases were categorised into 22 disease categories according to the 10th version of the International Classification of Diseases and Related Health Problems (ICD-10). Costs were estimated from the societal perspective using a bottom-up approach. Data collected for the 6 months were extrapolated to the entire year, allowing the mean annual costs to be estimated per patient. Cost estimation for this pilot study included hospital inpatient admission, patient’s and unpaid carer’s loss of productivity, and employment of paid carers. Results: A total of 276 independent participants (162 rare disease patients and 114 carers of patients with rare diseases) were recruited between 25 April and 6 August, 2020, covering 118 unique rare diseases. Among the 276 rare disease patients, 74% required care from a paid or unpaid carer. It was found that each rare disease patient requires an average of three rare disease-related inpatient days annually. Job opportunity was affected in 60% of patients, and 61% of carers, which included unemployment, changed from full-time job to part-time job and early retirement. Due to the patient’s rare disease condition, patients and carers who were employed were required to take an annual average of five and 15 days of annual leave, respectively. The total annual cost for the 276 rare disease patients was estimated to be a minimum of HKD$22,771,049, with a minimum average cost of HKD$82,504 per patient per year in Hong Kong. Conclusion: The pilot study demonstrated the feasibility of using CSRI-Ra in Hong Kong to estimate the direct and indirect costs of rare diseases. It reflects the importance of rare diseases in health policies. It also provides a framework for long-term monitoring for efficient and effective healthcare planning.