Is inflammatory arthritis affecting your daily life?

[Aribah-NRAS]

Researchers led by Dr Sam Norton at King's College London would like to invite you to take part in research exploring the impact of inflammatory arthritis on daily life.

People with inflammatory arthritis (such as rheumatoid arthritis, psoriatic arthritis, and spondylarthritis) typically experience symptoms such as pain, joint stiffness, and fatigue that can fluctuate dramatically over time. They are conducting this study to better understand how symptoms fluctuate during the day, and how symptoms impact on people’s mood and daily life. This will help to understand how best to measure symptom variability and the impacts of inflammatory arthritis on daily life; for example, by your doctor to monitor the effectiveness of starting a new treatment or during a period of disease flare.

This study involves the completion of: i) short online survey; ii) 2 weeks of symptom assessments with 5 brief assessments each day sent by text message to your phone; iii) brief follow-up surveys 2 weeks and 6 weeks after starting symptom assessments. For more information see here t.co/nxxnkSOsl2

[Shonkie]

Don’t like the look of this, it asked for my bank details . No way!

[KittyJ in reply to Shonkie]

It didn’t ask for mine.

[Shonkie in reply to KittyJ]

Must have got into the wrong site. Will try again

[Amnesiac3637 in reply to Shonkie]

Nor mine. No details of any sort asked for apart from completing the survey.

[Ruth12345 in reply to Amnesiac3637]

Same here. No bank details asked for.🌻

[virtualreality]

I've read the study details linked in this post. From what I can gather, participants are required to complete an initial questionnaire, monitor their IA symptoms, physical activity and mood 5 times a day, every day, for 2 weeks, and then complete follow up questionnaires after 2 and 6 weeks, and are not being offered any compensation for their time, effort and contribution.

As someone with a background in academic research, I am concerned about the pattern I've seen of patients often being asked to contribute to research without any recognition of the time and energy this asks of them, and the value of the experience and insights their contributions provide. For people whose income may well have been affected by the very conditions they're providing insights about this feels rather exploitative to me. Particularly when the research is based in prestigious academic institutions, as is the case here. Even postgraduate researchers often have access to funding for their work.

Sorry to sound a potentially negative-sounding note, but this issue appears quite pervasive to me. I'm a great advocate of research, inquiry, and - crucially - better understanding patient experiences of health conditions and health services. But I can't help thinking that the overwhelming expectation that patients offer their experience and insights without recognition of the effort this takes or its value to furthering medical and social science is not right.

[Sebastian247]

I've stopped completing the first questionnaire as I've reached a question set asking me to circle the score from 1 to 10 , but there is no guidance (unless I have missed it and can't go back) about how the score applies (e.g what do 1 and 10 equate to).

This set of questions seem a bit odd as they require a response from 1 to 10, for example; How long do I think my arthritis will continue? What do the scores from 1 to 10 mean in the context of this question.....maybe I'm being a bit thick!

I've emailed asking for guidance.

Seb

[Sebastian247]

I've solved my query about guidance on the question scores. It wasn't displaying the guidance on my mobile phone but does on my computer.

Seb