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Table 3 Important disease aspects for patients with PsA

From: Incentives for Danish healthcare management based on a pilot outcome-based, patient-centric management model in psoriasis and psoriatic arthritis: the non-interventional IMPROVE study

Supercluster Cluster Subcluster Representative statement Cluster
mean
Subcluster
mean
Living with the condition Worries about my condition/unanswered questions I don’t have any information about what I can do for myself What can I do? If I feel pain, should I stop doing it?   4.1
Worries about my condition/unanswered questions Is it getting worse? (I feel out of my depth) How does the future look for me?   3.8
Worries about my condition/unanswered questions Unemployed – so what? For how long can I continue to work?   3.2
What you’re exposed to, feelings about it Pain I wake up during the night in severe pain   4.1
What you’re exposed to, feelings about it Mentally affected Mentally affected – the condition gets me down   4.0
What you’re exposed to, feelings about it My body is curling up Consequences of not being able to use my body – the underlying level is getting worse and worse   3.8
What you’re exposed to, feelings about it Tiredness I have to sleep for a few hours when I get home from work   3.5
What you’re exposed to, the feelings about it Restrictions in daily life (frustrating) Always dropping things – very frustrating   2.9
Treatment Medication (effects and side effects) Worries about the medication If the medication doesn’t work, are things just going to be the same for the rest of my life?   4.0
Medication (effects and side effects) Side effects I’m under a mental strain with the medication   4.0
Medication (effects and side effects) Can I go without the medication? If my condition has got worse while I’ve been taking the medication – can I possibly go without it?   3.6
Medication (effects and side effects) Hopes for the treatment The medication affects different people differently, and of course a lot of them have had only positive experiences   3.4
Medication (effects and side effects) Frustrated about the lack of effect I’ve tried a lot of the biological drugs, but either they were ineffective or I could not tolerate them   3.3
Own approach (I’m doing something myself) I’m bearing up/finding a solution You find that anything is possible   3.9
Own approach (I’m doing something myself) What I can do for myself? I find out a lot about my condition before I see the doctor   3.4
Surroundings Being treated as a patient (not a person, just part of the system) I get the impression that the doctor has to ‘tick the boxes’ You can easily end up feeling like a laboratory animal   3.8
Being treated as a patient (not a person, just part of the system) It’s hard to have a say in the treatment The doctor says that if I do not do as he tells me, he won’t refer me   3.8
The encounter with the system (the municipality) There is no understanding for/faith in me The municipality does not believe what I say   4.5
The encounter with the system (the municipality) It’s very difficult to get help Applying for a flexible-hours job was a struggle   3.0
The encounter with the system (the municipality) An exhausting struggle with the system Contact with the public system is immensely exhausting   2.5
It’s difficult having an invisible handicap It’s hard for others to understand my condition I find it difficult to admit that I can’t do the same things as before   3.6
It’s difficult having an invisible handicap I notice that my illness makes people anxious about contact People are alarmed when you tell them you’re having chemotherapy (MTX)   3.3
It’s difficult having an invisible handicap It’s hard to explain the pain I’m in I don’t feel that I’m taken seriously   3.2