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

Nina M Van Leeuwen,Ad A Kaptein,Tom W.J Huizinga,Jeska K De Vries‐Bouwstra,Maaike Boonstra

doi:10.1002/msc.1453

Nina M Van Leeuwen, Ad A Kaptein + Show 3 more

Open Access

https://doi.org/10.1002/msc.1453

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Abstract

ObjectivesThis 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.MethodsPatients 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.ResultsWe 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.ConclusionThis study showed that a diagnosis of early SSc had a significant impact on patients' lives, also in the absence of severe disease complications.

Highlights

The majority of patients (n = 6) felt they were at risk for disease complications, which is shown on the Brief Illness Perception Questionnaire (BIPQ) dimension timeline and concern
We explored illness perceptions, risk perceptions and degree of worry in a few representative patients with recently diagnosed systemic sclerosis (SSc) who had not yet developed severe complications and still had an uncertain prognosis
Our study shows that being diagnosed with SSc can have a major impact on daily life, even in an early, relatively mild disease phase, and that patients describe a broad range of illness perceptions

Summary

| Participants

Patients from the Combined Care Pathway in Systemic Sclerosis (CCISS) (Meijs et al, 2016) were eligible for inclusion. The BIPQ consists of nine questions: (1) perceived consequences; (2) timeline (acutechronic); (3) amount of perceived personal control; (4) treatment control; (5) identity (symptoms); (6) concern about the disease; (7) coherence of the illness; (8) emotional representation; and (9) causal perception. Two patients with SSc participating in the CCISS cohort of the LUMC were involved in the development of the focus group discussion and evaluated the questionnaires. We explored the association between illness/risk perceptions as measured by the questionnaire and disease severity, as measured by the physical global assessment tool for disease severity (VAS score). The dimensions used for coding were perceived consequences, timeline (acute-chronic), amount of perceived personal control, treatment control, identity (symptoms), concern about the disease, coherence of the illness and emotional representation. Characteristics of patients were analysed using SPSS software (IBM Corp., Armonk, NY)

| RESULTS

| DISCUSSION