Illness perceptions, risk perceptions and worries in patients with early systemic sclerosis: A focus group study

Abstract

Objectives: This study explores illness perceptions, risk perceptions and degree of worry in patients with recently diagnosed systemic sclerosis (SSc). Specifically, it aims to answer whether and how early diagnosis in a stage that disease is relatively mild can impact patients' lives, and if and how disease severity associates with illness perceptions and risk perception.

Methods: Patients with a diagnosis of SSc <2 years were invited to participate in a focus group discussion for in-depth exploration of illness perceptions, risk perceptions and worry. In addition, illness perceptions, risk perceptions and worries were evaluated with the use of questionnaires. To explore how patients perceive SSc, we asked them to draw their disease. Physician global assessment of disease severity was used to measure disease severity. Associations between disease severity, illness/risk perceptions, drawings and elements of the focus group were assessed.

Results: We observed three dimensions of illness perception as most relevant for patients: personal control, concern and consequences. Patients with SSc experienced many symptoms and felt low personal control. Concerns about the future were often mentioned, and the majority of patients scored high on the worry questionnaire. None of the patients was preoccupied with prognosis or death. All drawings illustrate the impact of SSc on daily life and psychological well-being. Illness perceptions were highly variable between patients and did not associate with disease severity.

Conclusion: This study showed that a diagnosis of early SSc had a significant impact on patients' lives, also in the absence of severe disease complications.

Keywords: drawings; focus group; illness perceptions; patients' view; systemic sclerosis.

Figure 3

Topic guide focus group

Figure 1

Brief Illness Perception Questionnaire dimensions. Every colour represents one patient, range 0–10 [Colour figure can be viewed at wileyonlinelibrary.com]

Figure 2

Score on worry and risk questionnaire, range 2–14. Every colour represents one patient [Colour figure can be viewed at wileyonlinelibrary.com]

Figure 4

Examples of drawings showing illness representations/perceptions with explanations by the patients. (a) “My hands do the work, my hands make artwork, however, at this moment my hands are in pain and my fingers are getting thicker, it started with a little discomfort but it is getting worse. I have two kids, divorced, private business, a lot of insecurities, nut I am strong”. (b) Toekomst = future. “Most difficult part is not knowing what the future will bring. Will it get worse or will it stabilize?”. (c) “In every step the road will follow. The disease is like a mountain trail, will the trail to a new top or to the next valley”. (d) “This is a scale, drawn because every day I have to make sure to be balance and I cannot do too much in one day. The disease brings a lot of restrictions and I can get very tired which makes me feel frustrated, my battery is empty very fast” [Colour figure can be viewed at wileyonlinelibrary.com]