Table 3

Six higher level and 48 lower level concepts of suggested adaptions of PROMs according to young people with IA

Higher level conceptsLower level conceptsQuotes from interview transcripts
 Information, transparency and clarity regarding the purpose of PROMs are often missing
  • Reasons for using PROMs are often not known

  • Need for definition/explanation of terms

  • Uncertainty what to tick

  • Questions are incorrectly or not answered

  • Questions incite anxiety and/or fear

  • Feedback on PROM results is appreciated

  • Information about PROM results is available for members of the healthcare team

Well, I always wonder what exactly happens with those questionnaires. The doctor does not talk about it. He just transfers it to the computer. I don’t know what happens with it later on. It disappears in the cupboard and nobody looks at it anymore. (Female, 25, SpA, the Netherlands)
You are expecting that… a patient for himself… defines what [disease] activity is. No, you must direct a patient, you must ask pointed questions, what exactly you want me to answer. (Female, 30, RA, Croatia)
I had to answer, ‘Can you cut the meat with the knife?’ and, ‘Can you walk on flat ground?’. These questions really scared me. Can the situation worsen? Will there be a time in which I cannot do those things anymore? When answering these questionnaires, you are alone. Such kind of questionnaire should be explained to a sick person and filled out together with the doctor. (Female, 27, PsA, Italy)
I always think my rheumatologist and my nurse are looking at two different worlds of my disease and they never really talk about it, that’s how it feels. (Female, 21, SpA, the Netherlands)
 PROMs on daily functioning were seen as outdated
  • PROMs are not up to date

  • Inappropriate questions for young people

  • Items relevant to young people need to be added

  • Questions (wording) need to be reformulated

  • PROMs should be developed for different age groups

I am feeling like an old woman, whenever I read it. It is definitely not developed for younger people. (Female, 27, JIA, Austria)
I think ‘working on your computer' or ‘typing’ or something could be included. I mean how often do we still use a pen and pencil all day long? It should be a little more up to date. (Female, 25, PsA, the Netherlands)
Here it says ‘eat’ but before eating … it is to make lunch, dinner and the meal in general. (Female, 34, Still’s disease, Italy)
 Relevant issues are often not sufficiently addressed when assessing PROs in young people
  • Future plans for life

  • Education

  • Work and career goals

  • Intimate relationships

  • Sexuality

  • Body image and appearance

  • Family planning

  • Self-management

  • Use and outcomes of non-pharmacological treatments

  • Use of technological/assistive devices

  • Diet and food intake

  • Psychosocial aspects of being chronically ill

  • Social life, including hobbies and sports

  • Mobility—commuting on public transport and driving

  • Changing/holding a certain position

Nowadays there is a lot of emphasis on stress, also within our age group, but they never ask whether I worry about the future, family or about starting a family or that sort of things. That is never asked about. But I am much more concerned about what my life will look like than whether I have pain or not. (Female, 27, JIA, the Netherlands)
I had never noticed questions about mental state, social life, about the sexual life. All things that actually belong to a healthy active life. Not addressed at all. (Female, 32, SpA, Austria)
My appearance has never been brought up for discussion, but it impacts my teaching, my sex life,(…). (Male, 30, PsA, Austria)
Some people really experience barriers to start talking about certain topics. It’s nice if you are supported and it is kind of an ice breaker and you're kind of being pulled out of your bubble and it makes it possible for you to talk about it. (Female, 21, JIA, the Netherlands)
It is important whether you have pain somewhere and what the doctor can do about it. But I think it is also important what you [as an individual] need. Not only the physical part, but also the mental part, so how are you feeling. I think that is important too. (Male, 22, SpA, the Netherlands)
 The scoring on a rating scale sometimes differs from the current health situation
  • Scoring differently than the situation was experienced (on purpose to achieve something)

  • Wish for getting in touch/being recognised

  • Changes in disease management

  • To show a flare in between visits (lack of continuous monitoring)

I always score very low, like a 1, 2, or 3, which might look very harmless to the doctor. I often ask myself whether I should score worse, to get recognized. (Male, 30, PsA, Austria)
I have the pain for a very long time, perhaps not a ten, but even if it is a 5 it is really unacceptable for me! (Female, 28, PsA, Austria)
 The individual life situation of young people adds essential importance to the results of PROMs
  • PROMs should not only be used for data gathering, but as a mediator for discussions with HPs

  • Individualisation of outcome assessment would be appreciated

  • Using comprehensive PROMs

  • Using single scales only is insufficient

  • Clear reference points are often missing (with and without medication, compared with someone without a disease or another patient in remission)

  • Time frame is not adequate, for example, a longer time frame for scoring pain to include flares

  • Substantial fluctuation of pain levels is difficult to score

  • Forgetting the extent of pain over time

  • Interpreting results is difficult from the patients’ perspective

  • Losing important information (if PROs are quantified only, qualitative information, for example, in a discussion with the health professional, is missing)

  • Missing overview about disease course (patients would appreciate an overview regarding their scores over time)

  • Patients prefer NRS to VAS

  • Patients were confronted with differently formulated PGA questions

I really miss those questions about my daily life. They never ask me, ‘How do you live your life and how are you doing now?’. (Female, 25, RA, the Netherlands)
It needs a number of questions to describe the complexity of the disease. (Male, 30, PsA, Austria)
In my opinion it is problematic to estimate disease activity for today. With my medication, or without? At the moment, I am feeling fine, but it won’t be like that without any medication, I guess. And that makes scoring a bit difficult. (Female, 27, PsA, Austria)
To me this never makes sense. Never, this scale. I always think that it is much better when you elaborate the matter, on many more pages, with many more sub-questions. (Female, 34, RA, Croatia)
It’s always like 'on a scale of this to that, how much pain do you have and how are you doing now?' Well, I don’t know. I already have the disease for ten years, I've just gotten used to the pain, so I do not really know what to fill out. (Female, 25, RA, the Netherlands)
I think that if you just take five min to talk to your patient you will reach more than the result of this scale. (Female, 25, SpA, the Netherlands)
 The use of technology for data acquisition was suggested by some young people
  • New formats for collecting PROs are needed

  • Continuous monitoring supports self-management

  • Use of a symptom diary/log could be facilitated by digital technologies

  • Time-saving for patients and HPs

Nowadays this is done on the tablet. (Female, 27, JIA, the Netherlands)
A pain dairy would be great.(…)to get a better over-view about the disease course. (Female, 32, SpA, Austria)
Sometimes I do not want to answer with a whole story.(…)but I can also do that questionnaire [HAQ] digitally at my hospital. That is nice! (Female, 25, PsA, the Netherlands)
  • HAQ, Health Assessment Questionnaire; HPs, healthcare professionals; IA, inflammatory arthritis; JIA, juvenile idiopathic arthritis; NRS, Numeric Rating Scale; PGA, Patient Global Assessment; PROMs, patient-reported outcome measures; PROs, patient-reported outcomes; PsA, psoriatic arthritis; RA, rheumatoid arthritis; SpA, spondyloarthritis; VAS, Visual Analogue Scale.