Frailty Outcome Consensus (FOCUS) Project
The Need
In spite of increasing attention on frailty and its importance to care of older adults, high-quality evidence for decision making is often lacking.
Research concerning older adults and frailty often measures characteristics and descriptors of the study participants, which are referred to as data elements. Similarly, the research may measure a wide range of outcomes.
Using common data elements (CDEs) and common outcome measures (COMs) across research studies means that findings can be collectively analyzed to provide more robust findings that will better inform patient care.
In July 2019, CFN launched the Frailty Outcomes Consensus (FOCUS) Project. The FOCUS (Frailty Outcomes Consensus) Project aims to set levels of standardization for research studies so that common outcomes are captured in all frailty studies.
Our Initiative
International Meeting of Experts
To catalyze the development and use of CDEs and COMs in frailty studies, CFN convened an international group of experts to examine the issue and plan the path forward. Twenty-five researchers and other experts gathered in Miami in March 2018, and a summary of that meeting was recently published in The Journal of Frailty and Aging.
Selection of CDEs and COMs
Selection of CDEs and COMs will require broad input from the international community. To capture geographical and cultural differences, this will be done through a Delphi process that would go out to as many nations as possible and allow respondents to add additional items.
The FOCUS project has included the completion of a systematic review of frailty outcomes in the published literature. CFN has also surveyed persons living with frailty and their family/friend caregivers, both living in the community as well as long term care, to ensure outcomes important to persons living with frailty and their caregivers are included in our consensus process.
Delphi process
A Delphi process is a structured process where surveys are conducted in a series of “rounds”, that allows participants to analyze survey results from the previous round and re-assess their answers with the aim of arriving at consensus. The Delphi process for this project consists of completing a survey scoring the importance of various outcomes to ascertain if it should be included in a group of common outcomes. Three rounds of voting (surveys) were planned over the span of several months.
For a brief video overview of the project and survey process, please visit: https://www.youtube.com/watch?v=pORuVuO6GBg&feature=youtu.be
Results to-date
For the initial round (survey) of the Delphi process, participation was sought from older adults living with frailty and their caregivers, as well as researchers, clinicians, policy makers, industry representatives, or others working in the area of frailty. Recruitment ran from October 3, 2019 until November 8, and sufficient levels of participation in each group were achieved. In total, nearly 200 individuals participated from 25 countries.
Next steps
Once the Delphi process is complete, the Steering Committee will regroup.
Meet our expert Steering Committee
Darryl Rolfson, MD–University of Alberta, Edmonton, AB
Beverley Shea, PhD–Ottawa Hospital Research Institute, Ottawa, ON
Paula Williamson, PhD–University of Liverpool, Liverpool, UK
Matteo Cesari, MD, PhD–Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico Università di Milano, Milano, Italy
Leocadio Rodrigues Mañas, MD, PhD —Hospital Universitario de Getafe, Madrid, Spain
John Muscedere, MD, FRCPC –Scientific Director, Canadian Frailty Network
Learn More about CDEs and COMs
What exactly is a CDE (common data element)? A COM (common outcome measure)?
Data elements are the individual items that are being measured in a research study about study participants such as; age, gender, cognitive status, level of functioning, among others. The advantages of using common data elements are that you can systematically collect, analyze and share information about participant groups with others doing similar research.
An outcome measure is a tool used to assess a study participant on a variable of interest. Outcomes are measured at the beginning and at the end of a study. Researchers are interested in an intervention or treatment’s effect on change in outcomes. Outcomes may span a broad range of categories, depending on the topic of study. This may include mobility, mood, strength, nutritional status and many other categories.
Common outcome measures are outcomes that would be measured in all frailty studies at a minimum. Study researchers would be free to measure any study-specific outcome measures as required. However, an agreed upon set of common outcome measures would allow for the direct comparison of effects of interventions/treatments.
For More Information on this Initiative
If you have any questions about the FOCUS Project, please contact:
Jeanette Prorok, PhD
613-549-6666, x.6210