Gender and the Premature Deaths of People with Intellectual Disabilities : An International Expert Consultation

Robertson, J. and Heslop, P. and Lauer, E. and Taggart, L. and Hatton, C. (2021) Gender and the Premature Deaths of People with Intellectual Disabilities : An International Expert Consultation. Journal of Policy and Practice in Intellectual Disabilities, 18 (2). pp. 89-103. ISSN 1741-1122

Abstract

People with intellectual disabilities die at much younger ages than the general population, with this gap in life expectancy greater for females than males. This study aimed to seek the views of international experts concerning evidence relating to gender and the premature deaths of people with intellectual disabilities, their views on priorities for future research, and recommendations for future research and policy. Twenty international experts on the health and/or mortality of people with intellectual disabilities were invited to complete an online questionnaire. The questionnaire was based on summary statements from a literature review on gender and premature death among people with intellectual disabilities compared to the general population. Summary statements included general topics such as mortality and specific major causes of death (e.g., cancer). For each summary statement, respondents rated on 5-point scales: their agreement with the statement; the importance of the topic; and the adequacy of the evidence. Participants then indicated their top three priorities for future research, and gave recommendations for future research and policy. Eighteen (90% response rate) respondents from nine countries participated. There was consensus among respondents regarding the greater inequality in intellectual disability vs. general population mortality rates for women compared to men. Evidence was considered inadequate for most topics. Evidence on cause-specific death rates was the most frequently mentioned main research priority, followed by age trends in mortality compared to the general population. Recommendations ranged from the need to use consistent methodology and case definition in future research, to the need for governments to be called to account on the issue. Further evidence on gender and mortality is urgently needed; an international consensus on recommendations for future research pertaining to gender and the premature deaths of people with intellectual disabilities would greatly assist the development of evidence-based policy and practice. © 2020 The Authors. Journal of Policy and Practice in Intellectual Disabilities published by International Association of the Scientific Study of Intellectual and Developmental Disabilities and Wiley Periodicals LLC.