Scoping review protocol documenting cancer outcomes and inequalities for adults living with intellectual and/or developmental disabilities

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 ma...

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Main Authors: Christine Kelly, Morgan Stirling, Janice Linton, Hélène Ouellette-Kuntz, Shahin Shooshtari, Julie Hallet, David Dawe, Mark Kristjanson, Kathleen Decker, Alyson Mahar
Format: Article
Language:English
Published: BMJ Publishing Group 2019-11-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/9/11/e032772.full
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author Christine Kelly
Morgan Stirling
Janice Linton
Hélène Ouellette-Kuntz
Shahin Shooshtari
Julie Hallet
David Dawe
Mark Kristjanson
Kathleen Decker
Alyson Mahar
author_facet Christine Kelly
Morgan Stirling
Janice Linton
Hélène Ouellette-Kuntz
Shahin Shooshtari
Julie Hallet
David Dawe
Mark Kristjanson
Kathleen Decker
Alyson Mahar
author_sort Christine Kelly
collection DOAJ
description 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.
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spelling doaj-art-eaa4c2b8c8f147d2bc2ce390450b69502025-08-20T02:07:30ZengBMJ Publishing GroupBMJ Open2044-60552019-11-0191110.1136/bmjopen-2019-032772Scoping review protocol documenting cancer outcomes and inequalities for adults living with intellectual and/or developmental disabilitiesChristine Kelly0Morgan Stirling1Janice Linton2Hélène Ouellette-Kuntz3Shahin Shooshtari4Julie Hallet5David Dawe6Mark Kristjanson7Kathleen Decker8Alyson Mahar9Department of Community Health Sciences, University of Manitoba, Winnipeg, Manitoba, CanadaDepartment of Community Health Sciences, University of Manitoba, Winnipeg, Manitoba, CanadaNeil John Maclean Health Sciences Library, University of Manitoba, Winnipeg, Manitoba, CanadaDepartment of Public Health Sciences, Queen`s University, Kingston, Ontario, CanadaDepartment of Community Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada7 Sunnybrook Health Sciences Centre, Toronto, Ontario, CanadaCancerCare Manitoba Research Institute, CancerCare Manitoba, Winnipeg, Manitoba, CanadaCommunity Oncology Program, CancerCare Manitoba, Winnipeg, Manitoba, CanadaDepartment of Community Health Sciences, University of Manitoba, Winnipeg, Manitoba, CanadaSchool of Nursing, Queen`s University, Kingston, Ontario, CanadaIntroduction 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.https://bmjopen.bmj.com/content/9/11/e032772.full
spellingShingle Christine Kelly
Morgan Stirling
Janice Linton
Hélène Ouellette-Kuntz
Shahin Shooshtari
Julie Hallet
David Dawe
Mark Kristjanson
Kathleen Decker
Alyson Mahar
Scoping review protocol documenting cancer outcomes and inequalities for adults living with intellectual and/or developmental disabilities
BMJ Open
title Scoping review protocol documenting cancer outcomes and inequalities for adults living with intellectual and/or developmental disabilities
title_full Scoping review protocol documenting cancer outcomes and inequalities for adults living with intellectual and/or developmental disabilities
title_fullStr Scoping review protocol documenting cancer outcomes and inequalities for adults living with intellectual and/or developmental disabilities
title_full_unstemmed Scoping review protocol documenting cancer outcomes and inequalities for adults living with intellectual and/or developmental disabilities
title_short Scoping review protocol documenting cancer outcomes and inequalities for adults living with intellectual and/or developmental disabilities
title_sort scoping review protocol documenting cancer outcomes and inequalities for adults living with intellectual and or developmental disabilities
url https://bmjopen.bmj.com/content/9/11/e032772.full
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