PROMs aim to collect information about how a disease affects key areas of a person’s life, such as their quality of life, ability to carry out daily activities and their social or sexual health. This information is useful in addition to disease activity scales and clinical measures to give a good picture of a person’s whole experience and the impact of their disease.
The new EULAR points to consider were developed by a multidisciplinary working group from 8 European countries. The group included health professionals and patient research partners. The work was completed in accordance with EULAR standard operating procedures.
The paper developed by EULAR and published in the 2022 issue of RMD Open includes four general principles and eight points to consider in people aged 18 to 35 with inflammatory arthritis. The principles emphasize that inflammatory arthritis has a considerable impact on all aspects of young people’s lives, and that PROMs are useful in measuring some of this, as well as supporting communication and informing shared decision-making. . The value of PROMs is optimized when young people are informed and empowered.
Points to consider highlight the need to keep young people informed about their PROMs and give them access to their data. They also study how health professionals can use PROMs to engage young patients in their care, while noting the need to respect patients’ preferences and willingness to talk about their body image and life plans. Online solutions should be used whenever possible and convenient for young patients with inflammatory arthritis.
These EULAR points to consider provide the first guidance for optimizing the use of available PROMs for young people with inflammatory arthritis. They should serve as a companion for clinicians and researchers in rheumatology practice, and when developing new PROMs or modifying existing tools.
Source:
European Alliance of Rheumatology Associations, EULAR
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