Patient engagement is recognized as a crucial component of high-quality healthcare services. Among rheumatic diseases, systemic lupus erythematosus (SLE) appears particularly challenging for the engagement of patients in their own care. According to the patient health engagement (PHE) model, patient engagement is a dynamic phenomenon that proceeds through four experiential positions (blackout, arousal, adhesion and eudaimonic project). The aim of the present study was to describe the engagement process from the point of view and the experiences of SLE patients. Ten in-depth interviews and four focus groups were conducted with an international sample of SLE patients from different European countries. Transcripts were analysed through thematic content analysis. Findings showed that a fully engaged patient results from reframing emotional, cognitive and behavioural dimensions. The advances along the process depends on how the patient succeeds in each position. In conclusion, PHE represents an appropriate model by which to understand the engagement process of SLE patients. In order to meet patients' needs, healthcare providers and patient support groups should consider the specific position of SLE patients, providing adequate and tailored support.

Mazzoni, D., Cornet, A., van Leeuw, B., Myllys, K., Cicognani, E. (2018). Living with systemic lupus erythematosus: A patient engagement perspective. MUSCULOSKELETAL CARE, 16(1), 67-73 [10.1002/msc.1208].

Living with systemic lupus erythematosus: A patient engagement perspective

Mazzoni, D
;
2018

Abstract

Patient engagement is recognized as a crucial component of high-quality healthcare services. Among rheumatic diseases, systemic lupus erythematosus (SLE) appears particularly challenging for the engagement of patients in their own care. According to the patient health engagement (PHE) model, patient engagement is a dynamic phenomenon that proceeds through four experiential positions (blackout, arousal, adhesion and eudaimonic project). The aim of the present study was to describe the engagement process from the point of view and the experiences of SLE patients. Ten in-depth interviews and four focus groups were conducted with an international sample of SLE patients from different European countries. Transcripts were analysed through thematic content analysis. Findings showed that a fully engaged patient results from reframing emotional, cognitive and behavioural dimensions. The advances along the process depends on how the patient succeeds in each position. In conclusion, PHE represents an appropriate model by which to understand the engagement process of SLE patients. In order to meet patients' needs, healthcare providers and patient support groups should consider the specific position of SLE patients, providing adequate and tailored support.
Articolo in rivista - Articolo scientifico
compliance; lupus; patient engagement; quality of life; Rheumatology; Chiropractics; Orthopedics and Sports Medicine; Physical Therapy; Sports Therapy and Rehabilitation; Rehabilitation
English
2018
16
1
67
73
reserved
Mazzoni, D., Cornet, A., van Leeuw, B., Myllys, K., Cicognani, E. (2018). Living with systemic lupus erythematosus: A patient engagement perspective. MUSCULOSKELETAL CARE, 16(1), 67-73 [10.1002/msc.1208].
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Utilizza questo identificativo per citare o creare un link a questo documento: https://hdl.handle.net/10281/210215
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