A frailty measure for persons with intellectual and developmental disabilities using aging care
Development of a frailty tool for the project will be based on a literature review and clinical information available in the interRAI instrument for home care (which is used in multiple sectors in Ontario, Canada and worldwide).
Research Results
Findings: 17 publications of original research were retrieved that measured frailty in aging adults with intellectual and developmental disabilities (IDD) using six distinct measures of frailty. In these studies, frailty was studied both as an outcome and a predictor for other outcomes (e.g. falls, institutionalization, survival). The knowledge translation experiences of their developers revealed that neither frailty measure had been used to support policymaking; though the Vienna Frailty Questionnaire for persons with Intellectual Disability-(Revised (VFQ-ID-R) was implemented in practice.
Impact of findings: While individuals with IDD have some unique aging needs, a measure of frailty status is helpful to understand current and future care needs. A valid measure of frailty specific to IDD can be derived using data collected as part of regular practice in home care settings across the country (i.e., RAIHC). Policymakers should recognize that linkages between researchers, policymakers and practitioners are vital to the development and implementation of measures to support people as they age. Frail adults with IDD may experience aging sooner in life compared to adults without such disabilities. Our results reveal that frailty- a state experienced with advancing age- can be identified in adults with IDD, and can predict negative outcomes. For this population to be appropriately served by aging care, they must first be recognized as an aging population. Frailty measures can do this. A frailty measure can be calculated for home care users with IDD using existing clinical information. This could help home care providers to better understand and meet current needs, as well as predict future needs. Early identification of frailty could lead to timely and appropriate supports that could help to keep aging adults with IDD in the community longer, and possibly out of long-term care.
Publications, presentations and webinars
For more information on why this research matters, click the links below:
About the Project
Closure of large institutions historically established to provide segregated care to adults with IDD was recently achieved in Ontario, but continues in some provinces. There is concern that, for this population, admissions to long-term care is another form of institutionalization. Early identification of frailty offers promise in promoting appropriate use of long-term care among aults with IDD.
The goal of the project is to improve community care and clinical outcomes of Canadians with intellectual and developmental disabilities who are frail by providing a tool to measure frailty in this population. Learnings from key informant interviews will inform recommendations for implementation of the frailty tool in home care settings.
For more details on the project rationale, hypothesis, objectives and research plan, click here.
Project Team
Principal Investigator:
Hélène Ouellette-Kuntz, PhD — Queen’s University
Co-Investigator:
Lynn Martin, PhD — Lakehead University
Project Contact: Hélène Ouellette-Kuntz — helene.kuntz@queensu.ca
FRA 2015-A-03
Development of a frailty tool for the project will be based on a literature review and clinical information available in the interRAI instrument for home care (which is used in multiple sectors in Ontario, Canada and worldwide).
Project Contact: Hélène Ouellette-Kuntz — helene.kuntz@queensu.ca
Key Findings for Families
- There are six tools to measure frailty among persons with intellectual and developmental disabilities
- Testing of these frailty tools is needed to make sure they are measuring what they are supposed to be measuring
By measuring frailty among people with intellectual and developmental disabilities we can better prevent poor outcomes.
- The researchers have developed a frailty tool for home care users with intellectual and developmental disabilities.
Why This Matters
Persons with intellectual and developmental disabilities make up 1 to 3% of Canadians and are now living longer and needing aging care. They use more healthcare than those of similar age without intellectual and developmental disabilities. Measuring frailty is important because it can tell us who is at risk for admission to long-term care or death. However, how to measure frailty in persons with intellectual and developmental disabilities is not well known.
About This Study
This study wanted to improve outcomes in persons with intellectual and developmental disabilities by developing a measure of frailty in this population.
- The researchers reviewed existing tools for measuring frailty among persons with intellectual and developmental disabilities.
- They interviewed other researchers who have developed frailty tools to understand their experience with using the tools.
Development of a frailty tool for the project will be based on a literature review and clinical information available in the interRAI instrument for home care (which is used in multiple sectors in Ontario, Canada and worldwide).
Project Contact: Hélène Ouellette-Kuntz — helene.kuntz@queensu.ca
Key Findings for Policy
Six measures of frailty among persons with intellectual and developmental disabilities were identified.
- Research looking at frailty among persons with intellectual and developmental disabilities has been conducted by only four research teams worldwide
Validation of tools for measuring frailty among persons with intellectual and development disabilities is key to successful implementation clinically.
- To date, these tools have not been used to inform policy
By measuring frailty among this population and addressing related needs, prevention of adverse outcomes and optimization of healthcare utilization can improve the care of persons with intellectual and developmental disabilities.
- The findings of this study have set the stage for the development and implementation of a new tool for measuring frailty among adults with intellectual and developmental disabilities who access home care services
Why This Study was Needed
Persons with intellectual and developmental disabilities make up 1 to 3% of Canadians and are now living longer and requiring aging care. This population uses more healthcare than those of similar age who do not have intellectual and developmental disabilities. Measuring frailty can help predict adverse outcomes such as institutionalization and death. However, measures of frailty specific to persons with intellectual and developmental disabilities are lacking.
Study Summary
This study aimed to improve community care and clinical outcomes in persons with intellectual and developmental disabilities by laying the foundation to develop a tool to measure frailty in this population.
- A literature review was performed to identify any existing tools for measuring frailty among persons with intellectual and developmental disabilities
- Interviews with key informants, teams working on the development of the identified tools, were conducted to gather information about their experience with knowledge translation of the tool
Development of a frailty tool for the project will be based on a literature review and clinical information available in the interRAI instrument for home care (which is used in multiple sectors in Ontario, Canada and worldwide).
Project Contact: Hélène Ouellette-Kuntz — helene.kuntz@queensu.ca
Key Findings for Researchers
Six measures of frailty among persons with intellectual and developmental disabilities were identified.
- Research looking at frailty among persons with intellectual and developmental disabilities has been conducted by only four research teams worldwide
Validation of tools for measuring frailty among persons with intellectual and development disabilities is key to successful implementation clinically.
- To date, these tools have not been used to inform policy
By measuring frailty among this population and addressing related needs, prevention of adverse outcomes and optimization of healthcare utilization can improve the lives of persons with intellectual and developmental disabilities.
- The findings of this study have set the stage for the development and implementation of a new tool for measuring frailty among adults with intellectual and developmental disabilities who access home care services
Why This Study was Needed
Persons with intellectual and developmental disabilities make up 1 to 3% of Canadians and are now living longer and requiring aging care. This population uses more healthcare resources than those of similar age that do not have intellectual and developmental disabilities. Measuring frailty can help predict adverse outcomes such as institutionalization and death. However, measures of frailty specific to persons with intellectual and developmental disabilities are lacking.
How This Study Addresses the Gap
This study aimed to improve community care and clinical outcomes in persons with intellectual and developmental disabilities by laying the foundation to develop a tool to measure frailty in this population.
- A literature review was performed to identify existing tools for measuring frailty among persons with intellectual and developmental disabilities
- Interviews with key informants, teams working on the development of the identified tools, were conducted to gather information about their experience with knowledge translation of the tool
Future research
- Validation of tools for measuring frailty among persons with intellectual and developmental disabilities is needed
- Implementation studies that consider the context, linkage and exchange efforts, push and pull efforts, as well as evaluation of process and outcomes are recommended
Development of a frailty tool for the project will be based on a literature review and clinical information available in the interRAI instrument for home care (which is used in multiple sectors in Ontario, Canada and worldwide).
Principal Investigator
Hélène Ouellette-Kuntz, PhD — Queen’s University
Publications
McKenzie, K., Martin, L., Ouellette-Kuntz, H. (January 2016). Understanding Implementation of Frailty Measures among Adults with Intellectual and Developmental Disabilities. Journal on Developmental Disabilities.
McKenzie, K., Martin, L., Ouellette-Kuntz, H. (December 2015). Frailty and intellectual and developmental disabilities: a scoping review. Canadian Geriatrics Journal.
Presentations
McKenzie, K., Ouellette-Kuntz, H., Martin, L. (September 2015). Examining how a frailty index can be used in the field of IDD.
McKenzie, K., Ouellette-Kuntz, H., Martin, L. (September 2015). Use of frailty measures in the field of intellectual and developmental disabilities.
Webinars
Frailty measure for persons with intellectual and developmental disabilities using aging care — Hélène Ouellette-Kuntz, Lynn Martin and Katherine McKenzie
Development of a frailty tool for the project will be based on a literature review and clinical information available in the interRAI instrument for home care (which is used in multiple sectors in Ontario, Canada and worldwide).
Principal Investigator
Hélène Ouellette-Kuntz, PhD — Queen’s University
Rationale: Early identification of frailty and its incorporation in care planning offers promise in preventing institutionalization and promoting appropriate use of long-term care for individuals with intellectual and developmental disabilities (IDD) – but only if the knowledge of frailty status is incorporated into decision-making.
Hypothesis: Early identification of frail individuals with IDD will provide an opportunity to put in place needed community supports, thereby ensuring that institutionalization (re-institutionalization for some) or admission to long-term care is appropriate.
Objectives: Our overall goal is to improve community care and clinical outcomes by developing a measure to assess and monitor frailty among community-dwelling adults with IDD. This project specifically aimed to conduct (1) a scoping review of the literature related to frailty among aging adults with IDD and (2) in-depth key informant interviews to understand how frailty measures are used in the field of IDD.
Research plan: A scoping review conducted to identify and select original research published since 2000. Key informant interviews and qualitative analyses were guided by the World Health Organization’s (2012) Ageing and Health Knowledge Translation Framework. As such, the review examined: (1) climate and context for research use, (2) linkage and exchange efforts, (3) creation of new knowledge, (4) push efforts, (5) facilitating pull efforts, (6) pull efforts and (7) evaluation of efforts to link research to action.