Introduction
Methods
Sample size
Materials
Interviews
Data analysis
Results
n | % | |
---|---|---|
Education | ||
Upper secondary school certificate | 6 | 54.5 |
Lower secondary school certificate | 3 | 27.3 |
A-levels | 1 | 9.1 |
Not indicated | 1 | 9.1 |
Psoriasis types | ||
Psoriasis not further specified | 6 | 54.5 |
Psoriasis and psoriasis arthritis | 2 | 18.2 |
Psoriasis vulgaris | 3 | 27.3 |
Psoriasis severity | ||
Mild | 2 | 18.2 |
Moderate | 6 | 54.5 |
Severe | 3 | 27.3 |
Gender | ||
Male | 8 | 72.7 |
Female | 3 | 27.3 |
Mean | Standard deviation | Range | |
---|---|---|---|
Age (years) | 52.9 | 10.9 | 63–24 |
Years of psoriasis diagnosis | 21.2 | 12.3 | 3–34 |
Subjective well-being as treatment outcome
Terms for SWB
Influence of disease and treatment on SWB
To check whether DESQ responses reflect treatment benefit, we analyzed the answers to the first three scenarios: All participants confirmed that the different hypothetical DESQ response trends reflected treatment success, linking SWB improvement to higher benefit and SWB deterioration to lower success. However, results were less clear for the constant responses scenario. Some participants assigned these to “resignation” or stated they would just give the treatment “a little time.” One patient noted that previous experience played an important role in what constant responses indicate:No no. [When asked whether the illness had an influence on DESQ responses] Uh, in regard to the illness itself is concerned, everything is being tried indeed, I would say. (Female, 52 years)
In addition to the effects of treatment on SWB, patients mentioned other psoriasis-related factors that modify SWB, and thus treatment success, in the context of their daily lives or rehabilitation. They described these factors to either change disease status and consequently SWB or affect SWB but not necessarily the symptoms. For example, the availability and feasibility of effective therapies (n = 4), disease relapses (n = 3), stress (n = 3), personal calmness (male, 47 years; n = 1), and seasons (male, 58 years; n = 1) were found to change disease status and SWB, whereas expectations of a new therapy (n = 4), interaction with peers during in-patient stay (n = 4), physical activity (n = 4), patient education (n = 4), or distraction from the disease (n = 1) affect SWB but not necessarily the symptoms.Then [if SWB response remained constant] I would also blame it on the treatment. (...) Unless I knew from experience it could be much worse (...). It's always a matter of the perspective from which you look at it – isn’t it? If you have this attitude or already made very, very bitter experiences, then you're glad if you never reach this bitter point again. (Male, 47 years)
Relevance of SWB as an indicator of treatment benefit
Three participants did not spontaneously mention the importance of SWB as an outcome, but described SWB to have a different role, for example, as a cause of therapy success. However, no one said that SWB was not important or worthwhile.Yes, actually a relatively large one [role of SWB for treatment benefit], let’s put it that way. Because if you don’t feel comfortable with yourself, how are you going to face other people or look at yourself in the mirror if you’re not happy with yourself? (Male, 58 years)
Relationship between SWB and other treatment outcomes
Relevant outcomes of psoriasis therapy
Relation between SWB and relevant treatment outcomes
And the skin has also improved. So, I also rate the smileys a bit higher. (Male, 62 years)
Most participants (n = 9) also described indirect influences of symptoms on SWB, mainly by the extent and visibility of skin appearance. Many reported negative reactions to visibly affected body parts, severe scaling, or hair loss (n = 5):So I think the itching, that is what has an extreme impact on the daily schedule [patient’s term for DESQ questionnaire]. (Male, 50 years)
In general, these patients reported that skin symptoms in less visible areas had less impact on their SWB:And even if your own work colleagues then say, ‘You, I’ve already thought about whether I may even still shake your hand at all?’ (Male, 58 years)
As a possible consequence of negative reactions from others and high visibility of affected skin areas, two interviewees also mentioned social isolation with regard to a reduced SWB:Yes, it [the psoriasis] was on body areas where you did not see it. And then, to be quite honest, it didn’t bother me so much. (Female, 52 years)
Finally, nine participants considered SWB to be an indicator of disease status, as improved SWB reflects improvements in other outcomes as well.You feel really MISERABLE. So, you really only go out in the dark (…) if you have the entire back of your head, everything damaged, open (...) and from your neck to your knees in one (...) practically red all the way through and, uh, everything is open, uh, it does look bad. You have no real life there. (Male, 55 years)