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Original research article
Illness representations of systemic lupus erythematosus and systemic sclerosis: a comparison of patients, their rheumatologists and their general practitioners
  1. Seher Arat1,
  2. Jan L Lenaerts2,3,4,
  3. Ellen De Langhe1,4,
  4. Patrick Verschueren1,4,
  5. Philip Moons5,6,
  6. Joris Vandenberghe7,8,
  7. Veerle Taelman4 and
  8. Rene Westhovens1,4
  1. 1Department of Development and Regeneration, Katholieke Universiteit Leuven, Skeletal Biology and Engineering Research Center, Leuven, Belgium
  2. 2Department of Rheumatology, Jessa Hospitals Hasselt, Hasselt, Belgium
  3. 3Department of Rheumatology, Reuma-Instituut Hasselt, Hasselt, Belgium
  4. 4Department of of Rheumatology, University Hospitals Leuven, Leuven, Belgium
  5. 5Department of Public Health and Primary Care, KU Leuven, Goteborg, Sweden
  6. 6Instituteof Health and Care Sciences, University of Gothenburg, Leuven, Belgium
  7. 7Department of Neurosciences, Katholieke Universiteit Leuven, Leuven, Belgium
  8. 8Department of of Psychiatry, University Hospitals Leuven, Leuven, Belgium
  1. Correspondence to Seher Arat; seher.arat{at}kuleuven.be

Abstract

Objective Discrepancies in illness representations between patients and physicians result in treatment difficulties, decreased well-being of patients and misunderstandings and disrupted communication. Hence, the objective of this study was to compare illness perceptions of individual patients with systemic lupus erythematosus (SLE) and systemic sclerosis (SSc), their rheumatologists and their general practitioners (GPs) and explore potential differences.

Methods This study has a cross-sectional design. Patients with SLE and SSc, who were followed at the rheumatology department of the University Hospitals Leuven (Belgium), completed the revised Illness Perception Questionnaire which measures patients’ perceptions of their condition and captures nine dimensions. Physicians completed the Revised Illness Perception Questionnaire for Healthcare Professionals which consists of seven dimensions and measures perceptions of the healthcare professional regarding the disease of their patients. Intraclass correlation was performed to examine relationships between pairs of respondents; Cohen’s d was used for estimating the magnitude of the difference.

Results Questionnaires were sent to 284 patients of whom 241 (113 SSc and 128 SLE patients) were included. Five rheumatologists and 160 GPs participated. For both diseases, positive correlations were found for ‘consequences’, ‘illness coherence’ and ‘emotional representations’ among patients, rheumatologists and GPs. GPs scored higher on the ‘consequences’ of these diseases for the patient (d=0.71 for SLE; d=0.80 for SSc). Differences between rheumatologists and GPs were small for SSc and moderate to large for ‘consequences’ (d=0.56) and ‘timeline acute/chronic’ (d=0.95) in SLE with higher scores for GPs.

Conclusions For both diseases and among the three groups, significant correlations are detected for the dimensions ‘consequences’, ‘illness coherence’ and ‘emotional representations’. Differences between rheumatologists and GPs were mainly detected in the case of SLE patients. This can have implications for the collaboration between these two groups of physicians in daily clinical practice.

Clinical trial registration NCT02655640; Pre-results.

  • systemic lupus erythematosus
  • systemic sclerosis
  • psychology
  • multidisciplinary team-care
  • patient perspective

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors SA, PM, JV and RW conceived the study and participated in its design and data analysis, interpretation of the findings, report writing, manuscript preparation and critically revising of the manuscript. JL, EDL, PV and VT were involved in the data collection, data analysis, interpretation of the findings and critically revising of the manuscript. All authors read and approved the final version of the manuscript.

  • Funding This research project was supported by the Belgian ‘Fonds voor Wetenschappelijk Reuma Onderzoek/Fonds pour la Recherche Scientifique en Rhumatologie’.

  • Competing interests None declared.

  • Ethics approval Institutional Review Board of the University Hospitals Leuven.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No additional data are available.

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