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 ≥ .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.

Establishing the costs of eye care is essential to compare interventions using cost-benefit or cost-effectiveness analysis. Recent studies that have calculated costs have demonstrated where lack of data and different methods have given rise to substantial differences in costs between countries.^1-4When all costs of vision impairment have been included, the indirect costs (such as the use of caregivers and lost productivity) make up 9% of the total, though this proportion contrasts with a study from the United States in which the cost of caregivers was only 1% of total costs of vision impairment.^1,2When costs of caregivers have been included in health care costs, they have been obtained retrospectively using questionnaires or interviews.^5-7

The societal perspective, which includes both direct and indirect costs, gives the broadest view of costs for economic analysis and thus the recommended method for cost-utility analysis.⁸Direct costs are both medical and nonmedical for the provision of inpatient and outpatient care in both public and private sectors in hospitals. They also include expenditures for health care and rehabilitation practitioners and costs incurred by patients in attending health care appointments. Also included are the costs of pharmaceuticals and government-funded research. Indirect costs include lost productivity and use of informal care. Some components of indirect costs can be derived from government-held data, epidemiological data on the prevalence and impact of a disease, and employment rates. The use of caregivers and individuals' out-of-pocket expenses for nonmedical-related expenditures are rarely available, as they are difficult to obtain. This difficulty is evident in a recommendation that the costs of care, transportation, and social services not be included in calculations owing to the uncertainty in establishing them.⁸Estimates were used in India to calculate productivity losses in those affected by visual impairment and their caregivers. It was estimated that 10% of the time of an economically productive member of the family was lost for each person with impaired vision.⁷The determination of the global costs of vision loss and blindness relied on the Indian study's estimate of the amount of time caregivers, who are usually family members, provided care for someone with visual impairment.⁹

In a study of the personal costs borne by adults who are visually impaired, monthly diaries were used to record the services and hours of time provided by caregivers.¹⁰The aim of this article is to report the activities and time commitment of caregivers used by visually impaired people so that future national or global estimates can include these costs.

The methodology for this project has been detailed elsewhere.¹⁰People with vision impairment were recruited from public and private eye clinics, a vision rehabilitation agency (Vision Australia), and consumer groups (Glaucoma Australia and Retina Australia). Eligible participants had visual acuities of less than 20/40 (logMAR <0.3). Demographic characteristics of participants were obtained from a questionnaire administered at the commencement of the study (Table 1). The study was conducted in accordance with the Declaration of Helsinki. Ethics approval was obtained from the Royal Victorian Eye and Ear Hospital Ethics Committee.

Each participant recorded personal vision-related costs daily, if incurred, throughout 12 consecutive months in diaries formatted to be easy to use by people with impaired vision. The instructions emphasized that costs recorded must be related to their impaired vision. The diaries were composed of 4 sections: informal care and support; medicines, products, and equipment; health and community services; and other expenses (primarily, the use of taxis). In all sections other than informal care and support, costs were recorded in Australian dollars. To document the use of caregivers, participants recorded the activities their caregivers performed (Table 2), the frequency and amount of time they used a caregiver (in hours), and who the caregiver was (Table 3).

The costs of care were planned to be calculated using either opportunity or replacement costs, depending on the type of care used, the method used being dependent on who provided the care. Replacement costs are defined as those used when the caregiver provides assistance that is normally provided by a skilled provider, such as a health professional. Opportunity costs are those associated with caregivers who are family, friends, or volunteers who are providing care instead of working or partaking in leisure. This cost was calculated as time in hours spent giving care multiplied by the average Australian hourly pay rate (A$11.25 [US $8.73]) of the Wage Cost Index.¹¹Associations with demographic variables and costs were analyzed using Spearman correlation coefficients for continuous and normally distributed variables (ie, age) and the Kruskal-Wallis or Mann-Whitney test for categorical or nominal variables (ie, sex, place of residence, and living arrangements). Data were analyzed using SPSS statistical software, version 16.0.1 (SPSS, Chicago, Illinois). P < .05 indicated statistical significance.

The mean age of the 114 eligible participants (64% female) was 66.5 years (standard deviation [SD], 19.7 years) (Table 1). All participants had visual acuities worse than that required to hold a driver's license in Australia (<20/40). Most of the participants (65.7%) had low vision (<20/40-20/400) and 34.3% had severe vision impairment (<20/400). The most common cause of vision loss was age-related macular degeneration (44.7%). The median duration of vision impairment was 10.1 years (range, 1-77 years). Almost three-quarters of the participants (72.9%) reported that they had a nonocular comorbidity, though most (67%) indicated that it had little or no interference in their lives.

The mean time that respondents used caregivers was 152.2 hours per year (SD, 193; median, 81.3; range, 1-851 hours per year). There were no significant associations for any of the demographic characteristics (age, sex, living arrangement, or place of residence) with the amount of informal care and support received (P ≥ .1 for all; data not shown). Furthermore, there was no association of nonocular comorbidity (Mann-Whitney, P = .36), visual acuity (Kruskal-Wallis, P = .57), or the effect of other nonocular comorbidities (Kruskal-Wallis, P = .07) with the use of informal care

All but 9 participants (11.4%) used caregivers at least once during the year of data collection. The services that caregivers most commonly provided were those that require good vision: driving, reading documents, and support for independent activities outside the home. The most common type of care was the provision of transportation—for 90 participants (78.9%). People of working age relied on caregivers for transportation related to work, whereas older participants used it for everyday and social activities. Assistance with personal affairs included banking, personal correspondence, and other similar activities that impaired vision makes difficult. The percentage of the caregiver's time that was spent on health (1.0%) and personal (1.8%) care was very small.

In addition to mean monetary values for the amount of care (Table 2), median values were calculated, as there was wide variation in the amount of care each participant used. The median value represents 4.6% of a working week (35 hours per week in Australia). The greatest amount was 17.7 hours, or 50% of a working week. Care was most commonly provided by a family member from within or outside the participant's home (Table 3). Relatives were commonly adult children or spouses, but other family members also provided care. Many people used multiple caregivers.

As the use of caregivers for personal care was minimal (<3%), we decided to only use opportunity costs, not replacement costs. The median annual opportunity cost of caregivers was A$915 (US $710) (range, A$0-A$9653 [US $0-$7491]). The median total cost from the 4 diary sections (informal care and support; medicines, products, and equipment; health and community services; and other expenses) was A$2417 (US $1886). The use of caregivers was the largest of the cost categories (38%).

This is the first study to prospectively obtain data associated with the time and cost of caregivers for people with impaired vision. Our findings showed that the degree of vision impairment was not associated with the amount of care used. There appears to be a threshold effect in that 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. Diaries were used to obtain data on the amount of care provided, caregivers, and activities for which care was provided for people who were blind or had low vision. While some people with impaired vision make little use of informal care, there is a large variation in the time used and therefore the costs involved. There were no vision-related or other sociodemographic variables that accounted for the variation. Working-age people made similar extensive use of caregivers as older people did.

While no comparison group of people without visual impairment is available, we examined a larger study that included people who had eye disease but visual acuities better than or equal to 20/40.¹²Thirty-two adults in that study with early stages of glaucoma or retinitis pigmentosa and vision within the normal range recorded use of caregivers using the same methodology. There was a nonsignificant trend (P = .07) of less use of caregivers by those with vision in the normal range (A$508 [US $395]) compared with people with moderate (A$1420 [US $1103]) or severe (A$983 [US $764]) vision impairment. The difference was significant when causes of vision impairment were compared (P = .04). Age-adjusted differences in use of caregivers by people with glaucoma was A$206 (US $160) compared with the range of A$505 to A$1974 for other causes of visual impairment.

Reports from the United Kingdom¹³and Australia have documented the lost productivity of caregivers.²In the estimates from the United Kingdom, those providing care over an extended period are not only less likely to be employed and have lower incomes during their working lives but also face lower incomes in retirement.¹³Caregivers of children with disabilities (usually coresident mothers) were less likely to work either full- or part-time and were less likely to be in the labor force than women who were not caregivers.¹⁴A separate article from this group has documented the use of caregivers by children and youth; caregivers were both parents and other family members.¹⁵

Impaired vision restricts easy access to printed materials, many activities of independent daily living, and mobility. The results of this study reflect the restriction of mobility, with transportation being the largest category of use of caregivers. The prohibition of individuals even with mild vision impairment to hold a driver's license has the same impact regardless of that individual's degree of vision loss and blindness. In many countries where driving is a common mode of transportation, vision impairment means relying on public transportation or caregivers to provide transportation. The lack of association between the degree of vision impairment and amount of time caregivers were used is likely to be related to the threshold of mild vision impairment and the consequences for independent mobility rather than an increase in need with poorer levels of vision.

Health conditions that affect physical independence require personal assistance for activities like bathing, dressing, and taking medications. The Netherlands Mental Health Survey and Incidence Study reported that 118 stroke patients (74%) required informal assistance from family or friends for community-based, domestic, and personal activities of daily living.³Most people with vision impairment do not need help for personal and health care but rely on caregivers for activities dependent on vision, such as transportation by car, shopping, and reading mail. Whereas the calculations of the cost of caregivers would normally use replacement costs, this study focused on opportunity costs, as the caregivers were mainly friends or family who provided help with mobility and communication rather than health or personal care.

Studies on the use of caregivers have previously used estimates, interviews, or questionnaires to collect retrospective data,^2-5while diaries allow the amount of time caregivers spend providing assistance to be reported on the day it occurred. Spontaneous recording of data has advantages over methods that rely on recall.¹⁶We checked the reliability of our data by using questionnaires at the conclusion of the data-collection period. The questionnaires sought information on types of costs to compare with the 4 sections of the diaries and subsidies received by participants. The comparison of diary-collected data with responses to the questionnaire showed that the data from diaries were underreported for time and expenses incurred, suggesting that caregivers might provide more time than the results show.¹⁰

Of the total costs of vision impairment in the United States, only 1% (US $0.36 billion) is spent on informal care.⁷The estimates for caregivers not residing with the person with self-reported impaired vision were based on data from the Medical Expenditure Panel Survey. People who were blind or visually impaired were estimated to use a mean of 6.3 and 2.0 days per year of a caregiver, respectively.²There were no data on care provided by members of the household. The values in the Prevent Blindness America report are considerably lower than those from this study, in which the median annual amount of caregiver time was slightly in excess of 10 days. Possible reasons for the difference could be that vision impairment was confirmed in reports from ophthalmologists, and prospective data were obtained from diaries in this study.

The estimate for India is almost twice the median amount of time that caregivers provided assistance in this study (8.3% vs 4.5%). In India caregivers are usually family members. The availability of formal government- or community-provided and subsidized care in Australia possibly accounts for the lower use of caregivers than in other countries. The results from our study could be an underestimate of the amount of caregivers' time that people with impaired vision in other countries need, as the Australian and local governments provide support to older people through the provision of home-delivered meals and help with household care and maintenance so that they may continue living independently in their homes.

The differences are also very likely due to methods of obtaining estimates of the cost of caregivers, as other studies have used retrospective self-report. Differences in health and welfare systems between countries cause differences in reliance on informal care. Government and voluntary organizations in many parts of Australia provide public transportation, delivery of meals and household care, and travel by taxi to people with impaired vision at no, low, or subsidized cost. The contribution of this study is in its methodology, which could be replicated to obtain the cost of caregivers in other countries.

There is the potential for cost saving if vision is retained, loss prevented, or function improved from rehabilitation. While many with impaired vision will continue to rely on caregivers for transportation, eye care interventions and low-vision rehabilitation can assist in independence for communication, mobility, and personal affairs. As the lost productivity of people with vision impairment and their caregivers contributes a significant amount to total costs, these cost savings can be considerable.⁶

This is the first prospective study to gather details of the use of caregivers for people who have impaired vision. The results show that the range in use of caregivers is very large but not associated with vision or demographic variables. We used a large sample that included people with a range of causes and degrees of impaired vision. It has been acknowledged that obtaining data to calculate the cost of caregivers is labor intensive and expensive,¹but data can be collected over a shorter period than that used in this study.¹⁶Our results could be used in countries with similar community services, but they would not likely be relevant for developed or developing countries without them.

Correspondence: Jill E. Keeffe, PhD, Population Health Unit, Centre for Eye Research Australia, University of Melbourne, 32 Gisborne St, East Melbourne 3002, Australia (jillek@unimelb.edu.au).

Submitted for Publication: July 23, 2008; final revision received May 14, 2009; accepted May 15, 2009.

Financial Disclosure: None reported.

Funding/Support: This research was supported in part by the Australian Government Co-operative Research Centre Program and by the Australian Research Council, Vision Australia, and a Royal Victorian Eye and Ear Hospital Wagstaff Fellowship (Dr Keeffe) and National Health and Medical Research Fellowship (Dr Lamoureux).

Additional Contributions: Vision Australia, Glaucoma Australia, and Retina Australia assisted in recruiting participants.