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Consideration of coping strategies for patients suffering from systemic lupus erythematosus: reflection for a personalised practice of patient education
M.-M. Farhat1, S. Morell-Dubois2, N. Le Gouellec3, D. Launay4, H. Maillard5, M.-H. Balquet6, R. Azar7, T. Quemeneur8, A. Boldron9, P. Bataille10, M. Lambert11, A. Lanteri12, A.-L. Buchdahl13, V. Sobanski14, P.-Y. Hatron15, E. Hachulla16, P. Clerson17
- Department of Internal Medicine and Clinical Immunology, Referral Centre for Rare Systemic Autoimmune Diseases North and Northwest of France, University of Lille, Inserm, CHU Lille, U995-LIRIC Lille Inflammation Research International Centre, Lille, France. meryem.farhat@chru-lille.fr
- Department of Internal Medicine and Clinical Immunology, Referral Centre for Rare Systemic Autoimmune Diseases North and Northwest of France, University of Lille, Inserm, CHU Lille, U995-LIRIC Lille Inflammation Research International Centre, Lille, France.
- Department of Internal Medicine, Valenciennes Hospital, France.
- Department of Internal Medicine and Clinical Immunology, Referral Centre for Rare Systemic Autoimmune Diseases North and Northwest of France, University of Lille, Inserm, CHU Lille, U995-LIRIC Lille Inflammation Research International Centre, Lille, France.
- Department of Internal Medicine and Clinical Immunology, Referral Centre for Rare Systemic Autoimmune Diseases North and Northwest of France, University of Lille, Inserm, CHU Lille, U995-LIRIC Lille Inflammation Research International Centre, Lille, France.
- Department of Internal Medicine, Lens Hospital, France.
- Department of Nephrology Dunkerque Hospital, France.
- Department of Internal Medicine, Valenciennes Hospital, France.
- Department of Pneumology, Dunkerque Hospital, France.
- Department of Nephrology, Calais Hospital, France.
- Department of Internal Medicine and Clinical Immunology, Referral Centre for Rare Systemic Autoimmune Diseases North and Northwest of France, University of Lille, Inserm, CHU Lille, U995-LIRIC Lille Inflammation Research International Centre, Lille, France.
- Department of Internal Medicine and Clinical Immunology, Referral Centre for Rare Systemic Autoimmune Diseases North and Northwest of France, University of Lille, Inserm, CHU Lille, U995-LIRIC Lille Inflammation Research International Centre, Lille, France.
- Department of Internal Medicine, Douai Hospital, France.
- Department of Internal Medicine and Clinical Immunology, Referral Centre for Rare Systemic Autoimmune Diseases North and Northwest of France, University of Lille, Inserm, CHU Lille, U995-LIRIC Lille Inflammation Research International Centre, Lille, France.
- Department of Internal Medicine and Clinical Immunology, Referral Centre for Rare Systemic Autoimmune Diseases North and Northwest of France, University of Lille, Inserm, CHU Lille, U995-LIRIC Lille Inflammation Research International Centre, Lille, France.
- Department of Internal Medicine and Clinical Immunology, Referral Centre for Rare Systemic Autoimmune Diseases North and Northwest of France, University of Lille, Inserm, CHU Lille, U995-LIRIC Lille Inflammation Research International Centre, Lille, France.
- Soladis Clinical Studies, Roubaix, France.
on behalf of the ESSTIM Investigators group
CER12476
2020 Vol.38, N°4
PI 0705, PF 0712
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PMID: 31858960 [PubMed]
Received: 02/06/2019
Accepted : 02/09/2019
In Press: 18/12/2019
Published: 28/07/2020
Abstract
OBJECTIVES:
Systemic lupus erythematosus (SLE) is a chronic autoimmune multi-organ disease with an unpredictable course. SLE causes functional disability, changes in body appearance, and psychological distress. When faced with SLE, patients have to implement coping strategies. Therefore, the aim of this study was to describe patients’ coping strategies, consider the implications for a personalised practice of patient education and evaluate patients’ adherence to HCQ treatment.
METHODS:
One hundred and fifty-eight SLE patients receiving hydroxychloroquine (HCQ) treatment entered a prospective, non-comparative, longitudinal study aimed at describing patients’ coping strategies and evaluating their adherence to the HCQ regimen. Coping strategies were evaluated using an abbreviated French version of the WCC-27 exploring 3 dimensions of coping: problem-centered coping, emotion-centered coping and search for social support. Adherence was assessed by the MASRI, the MMAS-8 and also objectively assessed by the patient’s serum level of HCQ. Data collected at study entry also included disease activity: SLEDAI, and disease extent: SLICC damage index. The prevalence of anxious and depressive symptoms was evaluated with the HADS. Quality of life was evaluated using the LupusQoL questionnaire.
RESULTS:
Patients were clustered using an unsupervised hierarchical classification based on coping strategies. Four clusters of patients were individualised. The cluster of patients with low problem-centered coping, high emotion-centered coping and the lowest search for social support had worse quality of life and more psychological distress. We did not find any inter-cluster differences in terms of compliance to HCQ.
CONCLUSIONS:
Patients’ knowledge is not the only parameter to consider for a personalised educational therapy: psychological parameters such as coping must also be considered to ensure the best possible quality of life. For educational therapy purposes, it is important not to group patients with the same coping style; heterogenous groups will enable patients to share their experiences and learn from the coping strategies of others.
