The cost of care for people with impaired vision in Australia.

OBJECTIVE: To prospectively collect data on the providers, types, and costs of care for people with impaired vision in Australia. METHODS: Adults with impaired vision, visual acuity worse than 20/40, were recruited from clinics, vision rehabilitation agencies, and support groups. Participants completed daily diaries for 12 months, entering information on the amount of time they used caregivers and providers and types of care. Demographic information was obtained from questionnaires. The cost of care was calculated using mean hourly wage rates. RESULTS: The mean age of the 114 participants was 66.5 years (standard deviation [SD], 19.7) with 64% of participants female; 105 of 114 participants relied on a caregiver at least once during the 12 months. The mean amount of yearly caregiver time used was 152.2 hours (SD, 193; median, 81.3; range, 1-851 hours). The median time represents 4.6% of a working week. There were no significant associations of age, sex, type, or place of residence with the amount of care received (P > or = .1). As most of the caregivers were family members who assisted with transport, written communications, and personal affairs, the "opportunity costs" were calculated. The median annual opportunity cost was A$915 (US $710) (range, $A0-$9653 [US $0-$7491]). CONCLUSIONS: This study prospectively obtained data for the cost of caregivers for people with impaired vision. The degree of vision impairment was not associated with the amount of care used but showed a threshold effect: when vision is impaired to the extent that people cannot legally hold a driver's license, reliance on caregivers appears to be independent of the severity of loss of vision.

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.

Personal costs of visual impairment by different eye diseases and severity of visual loss.

OBJECTIVES: To determine the personal out-of-pocket costs of visual impairment and to examine the expenditure pattern related to eye diseases and the severity of visual impairment. METHODS: This prospective cohort study recruited participants of any age who were able to converse in English and had presenting visual acuity (VA) of < 6/12. Participants completed cost diaries regarding their daily personal vision-related expenditure. These were grouped under four categories: 1) medicines, products and equipment, 2) health and community services, 3) informal care and support and 4) other expenses. Socio-demographic and clinical data were also collected. RESULTS: In 2003 150 participants, aged between 10 and 93 years old, were recruited. The median and mean total costs of visual impairment was Australian Dollars (AUD)$2416 and $3376, respectively (mode = AUD$2001-3000, SD +/- AUD$3050, Range AUD$7-$18610). Adjusting for age, there was no effect for severity of visual impairment (mild, moderate or severe) or type of eye diseases on the annual total personal out-of-pocket costs of visual impairment (p > 0.05). CONCLUSIONS: Regardless of the type of eye diseases and the severity of visual loss, visual impairment posed a significant financial burden to both the individual and society.

Methods for measuring personal costs associated with vision impairment.

PURPOSE: To describe and evaluate the procedures used to collect personal costs associated with vision impairment using diaries. METHODS: Participants with impaired vision (VA < 6/12 or > or = 6/12 with restricted visual fields) were recruited. Twelve-monthly diaries, provided in large print and electronic format (with audio and Braille instruction manuals and personal assistance), were used to record vision-related expenditures grouped under four categories. Two questionnaires were used to collect additional information and to test the validity of the self-reported costs. RESULTS: Of 227 people who consented to participate, 66% (n = 150; 91 females; mean age = 64.8 years) completed > or = 3 monthly diaries. Of the 150 eligible participants, 68% completed the diaries over 12 months, indicating a relatively high completion rate. The median total cost was AUD 2,417 dollars per annum and median values for the four expenditure categories ranged between AUD 206 dollars and AUD 872 dollars per annum. The data were consistent across different months with no significant difference found between any monthly comparison (t-test; p > Bonferroni-adjusted value). Data at 1, 3, and 6 months, extrapolated to annual figures, showed no significant difference from annual total costs, indicating consistency in the data collection periods. A significant association was found between diary data and similar entries in the follow-up questionnaire, confirming the validity of the recorded expenditures (Spearman; p < 0.01). Participants commented that the diary method was useful to obtain personal costs. CONCLUSION: A high response rate was achieved by using diaries and additional assistance methods. The diary provided an accurate and reliable strategy to determine the major personal costs associated with vision impairment.

Measurement of indirect costs for people with vision impairment.

From a societal perspective, chronic eye diseases can affect not only the person who has vision impairment but also the economics of that society. To obtain comprehensive medical and non-medical expenditures for people with impaired vision, direct and indirect costs should be collected. Indirect costs are usually not included in cost evaluation in health economics due to the difficulty of the data collection and analysis. Questionnaires and cost diaries have been developed in this study to estimate total resource use, expenses, and lost production from the participants or their caregivers due to the participants' vision loss. Pilot testing was conducted to verify the format, clarity of instructions, relevance of content and completeness of the questionnaires and diary. Modifications were then made to the format from feedback from the participants. Diaries using large print, audio and Braille facilitate data collection for people with impaired vision.