The health care and societal costs of inherited retinal diseases in Australia: a microsimulation modelling study

Deborah Schofield, Joshua Kraindler, Owen Tan, Rupendra N. Shrestha, Sarah West, Natalie Hart, Liny Tan, Alan Ma, John R. Grigg, Robyn V. Jamieson

Research output: Contribution to journalArticlepeer-review

7 Citations (Scopus)
58 Downloads (Pure)

Abstract

Objectives: 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.
Main outcome measures: 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.
Results: 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.
Conclusion: 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.
Original languageEnglish
Pages (from-to)70-76
Number of pages7
JournalMedical Journal of Australia
Volume219
Issue number2
Early online date10 Jun 2023
DOIs
Publication statusPublished - 17 Jul 2023

Bibliographical note

© 2023 The Authors. Medical Journal of Australia published by John Wiley & Sons Australia, Ltd on behalf of AMPCo Pty Ltd. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

Keywords

  • Cost of illness
  • Ophthalmology
  • Retinal diseases

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