Table 4

Similarities and differences of concepts addressed on a disease specific and country level

Higher level conceptLower level concept (LLC)LLC per disease groupLLCs per country
648RA/JIA/Still’s diseasePsASpAATHRNLIT
1. Information, transparency and clarity regarding the purpose of PROMs are often missingReasons 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++++
2. PROMs on daily functioning were seen as outdatedPROMs 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++
3. Relevant issues are often not sufficiently addressed when assessing PROs in young peopleFuture plans for life++++++
Work and career goals+++++
Intimate relationships+++++
Body image and appearance+++
Family planning++++
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+++
4. The scoring on a rating scale sometimes differs from the current health situationScoring 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)+++
5. The individual life situation of young people adds essential importance to the results of PROMsPROMs 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 (patient would appreciate an overview regarding their scores over time)++++++
Patients prefer NRS to VAS++++++
Patients were confronted with differently formulated PGA questions+++++++
6. The use of technology for data acquisition was suggested by some young peopleNew 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++
  • Concepts in BOLD were mentioned in all diseases and all countries.

  • +=LLC which had been mentioned.

  • AT, Austria; HPs, health professionals; HR, Croatia; IT, Italy; JIA, juvenile idiopathic arthritis; NL, the Netherlands; 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.