Joshua Kraindler - Quality of life for carers and spouses of those with familial intellectual disability

  • Presenting author: Joshua Kraindler (GenIMPACT: Centre for Economic Impacts of Genomic Medicine, Macquarie Business School, Macquarie University)

  • Authors: Deborah Schofield, Joshua Kraindler, Owen Tan, Katherine Lim, Rupendra Shrestha, Sarah West, Jackie Boyle, Lucinda Murray, Natalie Hart, Tony Roscioli, Michael Field

  • Session: C01B - Health [2] - Wednesday 9:00-10:30 - Marietta-Blau Hall

  • Slides: PDF


Individuals with intellectual disability (ID) require significant support, often leading to a substantial burden on carers and other family members. Currently, there is limited research on the quality of life impacts of people caring for someone with familial ID, and how a genetic diagnosis may impact this.


111 families with familial ID were recruited and administered the tailored EPIC_ID questionnaire, including the AQoL-8D to measure quality of life. Both carers and spouses were interviewed, including socio-demographic questions as well as information about the individuals they were caring for. A microsimulation model was developed including data on factors related to ID and its impacts and to link the EPIC-ID survey data with data on the general population. Health utility values for both carers and spouses were estimated. Outputs from microsimulation model were combined with socio-demographic information to estimate correlations with quality of life in carers and spouses.


Health utility values for both carers are spouses were significantly lower than population norms. Multivariate regressions revealed some correlations between patient characteristics and quality of life.


This study is the first to estimate health utility values for both carers and spouses in families with familial ID. The EPIC-ID model will provide data to inform cost-effectiveness studies for families with familial ID.