Perspectives of young people with arthritis on patient-reported outcome measures

A European League Against Rheumatism Task Force, which I am a member of, are aiming to incorporate the perspective of young people with inflammatory arthritis in patient reported outcome measures. To reach this goal, we wish to identify common themes that are important to young people with inflammatory arthritis.

Questionnaires and rating scales used within the healthcare setting are referred to as patient‐reported outcome measures. They are completed by patients to reflect their individual perspective, and 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 their healthcare professionals.

Phase one of our EULAR task force project, convened by Paul Studenic and Alessia Alunno, involved focus groups across four different European countries with young people with inflammatory arthritis, followed by the first Task Force meeting which was held in November 2018.

The team have now developed a survey to disseminate across Europe to gather additional information around this topic. In order to maximise the reach and overcome the language barrier (within the resources available), the survey has been translated into seven languages: English, German, French, Spanish, Portuguese, Italian and Russian.

Our study team consists of international rheumatology researchers, health professionals and patient research partners. Currently used patient‐reported outcome measures (such as ones looking at pain, fatigue and physical functioning) may not capture everything that matters to young people with arthritis. For this reason, we have designed a survey 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 our 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.

It takes about 15 minutes to complete the survey, and the team are sincerely thankful for your support in sharing the survey to reach as many people as possible!

If you have any further questions or suggestions, please email:

Written by simonrstones

Simon R. Stones BSc (Hons) is a multi-award winning patient advocate, consultant and researcher from Bolton in the United Kingdom. He was recognised in 2019 as one of the top 100 most influential people with disabilities in the UK, and was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with chronic conditions and invisible illnesses, inspired and empowered by his own journey with juvenile arthritis, fibromyalgia, and inflammatory bowel disease since childhood, as well as a carer for his mother. He is currently an Associate Fellow of the Royal Commonwealth Society, a trustee of Fibromyalgia Action UK and RAiISE, board member of the European Network for Children with Arthritis (ENCA) and President of the European Network of Fibromyalgia Associations (ENFA).

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