Article Text

Download PDFPDF

Scoping review protocol documenting cancer outcomes and inequalities for adults living with intellectual and/or developmental disabilities
  1. Morgan Stirling1,
  2. Janice Linton1,
  3. Hélène Ouellette-Kuntz2,
  4. Shahin Shooshtari1,
  5. Julie Hallet3,
  6. Christine Kelly1,
  7. David Dawe4,5,
  8. Mark Kristjanson6,7,
  9. Kathleen Decker1,8,
  10. Alyson Mahar1
  1. 1Department of Community Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada
  2. 2Department of Public Health Sciences, Queen's University, Kingston, Ontario, Canada
  3. 3Department of Surgery, University of Toronto, Toronto, Ontario, Canada
  4. 4Internal Medicine, University of Manitoba College of Medicine, Winnipeg, Manitoba, Canada
  5. 5Hematology and Medical Oncology, CancerCare Manitoba, Winnipeg, Manitoba, Canada
  6. 6Community Oncology Program, CancerCare Manitoba, Winnipeg, Manitoba, Canada
  7. 7Department of Family Medicine, University of Manitoba, Winnipeg, Manitoba, Canada
  8. 8Epidemiology, CancerCare Manitoba, Winnipeg, Manitoba, Canada
  1. Correspondence to Dr Alyson Mahar; alyson_mahar{at}


Introduction There is increasing attention on the cancer burden for adults with intellectual and developmental disabilities (IDD). Emerging evidence suggests there are differences in cancer experiences and outcomes for individuals living with IDD, from risk through survivorship. These differences may be attributed to features of the IDD, such as cognitive deficits and communication, as well as social determinants of health-like lower education levels and ableism. However, there is no comprehensive overview of the literature quantifying these potential disparities and describing the influencing factors. In this paper, we describe a scoping review protocol to systematically review published literature on cancer for adults with IDD. The purpose of this review is to identify differences in cancer risk, stage at diagnosis, treatment and survival along the cancer continuum for adults with IDD and outline potential contributing factors creating these disparities.

Methods and analysis We will follow Arksey and O’Malley’s expanded framework for scoping reviews to conduct this review. We will systematically search electronic databases for peer-reviewed, published journal articles to identify appropriate studies in collaboration with a health science librarian. Two reviewers will independently review titles and abstracts followed by a full-text review to determine whether it meets inclusion criteria. A data chart for collecting and sorting information will be developed in consultation with the team. Results will be collated and reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews: PRISMA-Scoping Reviews. Extracted information will be summarised quantitatively and qualitatively to meet review objectives.

Ethics and dissemination This scoping review will employ a methodology to identify literature related to cancer outcomes and experiences for adults with IDD. Results will be disseminated to relevant stakeholders who care for and support individuals with IDD at local, provincial and national levels and through publishing findings. By highlighting the disparities in the cancer system and gaps in the research, this scoping review can provide direction for future action.

  • intellectual and developmental disabilities
  • cancer
  • health equity
  • cancer outcomes
  • health disparities

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:

View Full Text

Statistics from


  • Contributors MS and AM conceived of and developed the protocol. JL, AM and MS conceived of the search strategy. MS, AM, HO-K and CK provided feedback to inform the protocol’s theoretical foundation. AM executed the search. MS, JL, HO-K, SS, JH, CK, DD, MK, KD and AM contributed to the development of the inclusion/exclusion criteria and to the final manuscript.

  • Funding This project was funded through an unrestricted Research Start-Up Funds grant from the Office of the Vice President (Research & International) at the University of Manitoba (Mahar).

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.