Table 2

The highest and the lowest rated concepts for each disease group and related statements

Highest/lowest rated conceptsRating*Statements (examples)
AxSpALack of understanding/to be heard and seen by healthcare professionals4.0❖I did not feel heard or seen until I was diagnosed
❖I had the feeling that others thought it was something I was imagining
Surroundings’/relatives’ understanding and ‘good’ advice3.2❖You just have to…
❖I cannot stand other people’s worries
PsAMedication (effects and side effects)3.8❖I also get hair loss from the medicine
❖It’s a vicious circle I've fallen into
Patientisation (not a person, but just someone in the system)3.2❖I feel that the doctor has to 'check his ticks' - very bureaucratic
❖You can feel like an experimental animal
PsOSocial and psychological problems, the shame4.0❖Self-esteem disappears
❖Felt like a leper
Consequence of the disease/the disease itself3.2❖People were very focused on my hands (due to the disease) in relation to my job (working with people)
❖Stress can trigger the symptoms
CDPositive attitudes4.3❖The future is bright, and I will not let myself be ruled by my illness
❖I cannot change my disease
Meeting the hospital3.6❖I wish some of the meetings could be done electronically
❖You sometimes feel that it is about economics
UCTake responsibility and control over your life4.0❖My focus is on a healthier, more balanced life. I am convinced that it has a positive effect on my life regardless of the effect of the medicine
❖It is the disease that must live with me and not the other way around
The influence and importance of diet3.0❖I think a lot about what I eat (what foods)
❖Confusion about diet. There is a lot of contradictory information
  • *Mean rating of each concept. (1) ‘not important at all’, (2) ‘a little important’, (3) ‘somewhat important’, (4) ‘very important’ and (5) ‘of great importance’.

  • AxSpA, axial spondyloarthritis; CD, Crohn’s disease; PsA, psoriatic arthritis; PsO, psoriasis; UC, ulcerative colitis.