Exploring the perspectives of young patients with chronic, inflammatory arthritis on patient-reported outcome measures

Having completed Phase 1 of the YoungPro project (focus groups in four different European countries with young people with inflammatory arthritis and the first Task Force meeting), EULAR has developed a survey to be spread across Europe to gather additional information around this topic.

The European League Against Rheumatism Task Force aims to incorporate the perspective of young people with inflammatory arthritis in patient reported outcomes (PROs). To reach this goal, we intended to identify common themes that are important to young people with inflammatory arthritis and to explore if they are covered by the most commonly used PROs. Questionnaires and rating scales are referred to as patient‐reported outcome measures and are completed by patients to reflect their individual perspective. They have become an integral part in assessing disease activity and the impact of disease on individuals and by that influencing treatment decisions, ideally taken together between the patient and the physician.

The study team consists of international rheumatology researchers, health professionals and patient research partners. Currently used patient-reported outcome measures (such as those looking at pain, fatigue and physical functioning) may not capture everything that matters to young people with arthritis.

For this reason, the survey is designed for young people (aged 18 to 35 years) with inflammatory arthritis (including juvenile idiopathic arthritis, rheumatoid arthritis, psoriatic arthritis, spondyloarthritis, ankylosing spondylitis and Still’s disease). Those having been diagnosed with one of these conditions are welcome to take part in the survey. Those above the age of 35 are also welcome to take part in this survey. This information will then be compared to the younger age group.

This survey consists of two parts:

  1. A section asking general questions about you and your health;
  2. A second part, asking about personal experiences with patient‐reported outcome measures.

In order to maximise the reach and overcome the language barrier, the survey was translated in 7 languages (English, German, French, Spanish, Portuguese, Italian and Russian).

It takes about 15 minutes to complete the survey and EULAR is sincerely thankful for your support in spreading the survey to reach as many people as possible!

Find the questionnaire here: www.soscisurvey.de/youngpro/

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