Costs of vision impairment in childhood and youth : diary case studies

PURPOSE.: Children and youth with vision impairment face a lifetime of vision-related costs. This paper examines the little-known personal costs incurred in these early years. METHODS.: Case studies of three children and one youth with vision impairment were extracted from a larger, diary-based prospective study of the personal expenditure of people with vision impairment. Diaries were maintained over a 12 month period and expenditure and resource utilization were recorded under four main headings: medicines, products and equipment; health and community services; informal care and support; and other expenses. RESULTS.: The scale of direct and indirect costs incurred differed by age at onset and duration of vision impairment. The highest personal costs were accrued for equipment. Informal care and support accounted for the highest indirect costs listed. Reliance on family meant that opportunity costs of relatives rather than out-of-pocket personal costs applied. Assistance from family members was consistently required in relation to transport, personal affairs, and reading-related tasks. Minimal costs were recorded for medicines. Usage of low vision services was commonplace, reflecting the cost-free availability of low vision rehabilitation and support services for children and youths in Australia. CONCLUSIONS.: This exploratory study draws attention to the complexity of factors that need to be considered when calculating the personal costs of vision impairment. Cross case comparisons showed that some personal costs were recurrent, others sporadic or once-off. By highlighting the role that age, onset and duration of vision loss, life/educational stage and lifestyle played in differentiating costs between case study participants, these diaries represent important formative work that can guide future research in this area.