Table 4

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

Higher level concept	Lower level concept (LLC)	LLC per disease group			LLCs per country
6	48	RA/JIA/Still’s disease	PsA	SpA	AT	HR	NL	IT
1. 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	+	+				+	+
2. PROMs on daily functioning were seen as outdated	PROMs are not up to date	+	+	+	+	+	+	+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	+					+
3. 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		+	+		+
4. 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)		+		+	+
5. 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 (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 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	+					+

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.