GenIMPACT: Centre for Economic Impacts of Genomic Medicine, Macquarie Business School, Macquarie University, Sydney, NSW.
Children's Medical Research Institute, Sydney Children's Hospitals Network, University of Sydney, Sydney, NSW.
Med J Aust. 2023 Jul 17;219(2):70-76. doi: 10.5694/mja2.51997. Epub 2023 Jun 10.
To estimate the health care and societal costs of inherited retinal diseases (IRDs) in Australia.
DESIGN, SETTING, PARTICIPANTS: Microsimulation modelling study based on primary data - collected in interviews of people with IRDs who had ophthalmic or genetic consultations at the Children's Hospital at Westmead or the Save Sight Institute (both Sydney) during 1 January 2019 - 31 December 2020, and of their carers and spouses - and linked Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Schedule (PBS) data.
Annual and lifetime costs for people with IRDs and for their carers and spouses, grouped by payer (Australian government, state governments, individuals, private health insurance) and type (health care costs; societal costs: social support, National Disability Insurance Scheme (NDIS), income and taxation, costs associated with caring for family members with IRDs); estimated annual national cost of IRDs.
Ninety-four people (74 adults, 20 people under 18 years; 55 girls and women [59%]) and 30 carers completed study surveys (participation rate: adults, 66%; children, 66%; carers, 63%). Total estimated lifetime cost was $5.2 million per person with an IRD, of which 87% were societal and 13% health care costs. The three highest cost items were lost income for people with IRDs ($1.4 million), lost income for their carers and spouses ($1.1 million), and social spending by the Australian government (excluding NDIS expenses: $1.0 million). Annual costs were twice as high for people who were legally blind as for those with less impaired vision ($83 910 v $41 357 per person). The estimated total annual cost of IRDs in Australia was $781 million to $1.56 billion.
As the societal costs associated with IRDs are much larger than the health care costs, both contributors should be considered when assessing the cost-effectiveness of interventions for people with IRDs. The increasing loss of income across life reflects the impact of IRDs on employment and career opportunities.
估算澳大利亚遗传性视网膜疾病（IRDs）的医疗保健和社会成本。
设计、地点和参与者：基于原发性数据的微观模拟模型研究——在 2019 年 1 月 1 日至 2020 年 12 月 31 日期间，在西悉尼儿童医院或挽救视力研究所（均在悉尼）接受 IRD 眼科或基因咨询的患者及其照顾者和配偶进行了访谈，并对他们的医疗保险福利表（MBS）和药品福利表（PBS）数据进行了链接。
按付款人（澳大利亚政府、州政府、个人、私人医疗保险）和类型（医疗保健费用；社会成本：社会支持、国家残疾保险计划（NDIS）、收入和税收、照顾有 IRD 患者的家庭成员的费用）对 IRD 患者及其照顾者和配偶的年度和终身费用进行分组；估计的 IRD 年度国家成本。
94 人（74 名成年人，20 名 18 岁以下；55 名女孩和妇女[59%]）和 30 名照顾者完成了研究调查（参与率：成年人，66%；儿童，66%；照顾者，63%）。估计每个患有 IRD 的人终生总费用为 520 万美元，其中 87%为社会成本，13%为医疗保健成本。三项最高成本项目是患者的收入损失（140 万美元）、患者照顾者和配偶的收入损失（110 万美元）以及澳大利亚政府的社会支出（不包括 NDIS 支出：100 万美元）。法定失明患者的年费用是视力受损较轻患者的两倍（每人 83910 美元对每人 41357 美元）。澳大利亚 IRD 的估计年总成本为 7.81 亿至 15.6 亿美元。
由于与 IRD 相关的社会成本远高于医疗保健成本，因此在评估 IRD 患者干预措施的成本效益时，应同时考虑这两个因素。整个生命周期收入的不断减少反映了 IRD 对就业和职业机会的影响。
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