Six medico-psycho-social dimensions of a pedagogical model used to define clusters of patients with Sjögren's syndrome and intentionality to participate in a patient education programme.

Abstract

Sjögren's syndrome (SS) is an autoimmune disease with an impact on quality of life (QoL). The aim of patient education (PE) is to improve patients' QoL. The main objective of this study was to describe the medico-psycho-social characteristics defining the six spheres of an allosteric educational model in order to characterise clusters of patients with SS and intentionality for patients to participate in a programme of patient education. A self-administered questionnaire was proposed to 408 patients with SS followed in the Department of Internal Medicine of the University Hospital of Lille, France with the aim of assessing the six spheres of the allosteric model: intentional, perceptual, affective, cognitive, infra-cognitive and meta-cognitive. Sub objectives were to determine factors that can influence intentionality to participate in a PE programme and to determine, using cluster analysis, similar characteristics of patients with SS. 127 patients (31%) agreed to participate and were included in the study; 96% were women and the median age was 51 years (±14.5). They mostly reported dry syndrome and fatigue, had a good knowledge of SS, and presented anxiety symptoms. They mainly had problem-centred coping strategies, internal locus of control and low self-esteem. SS had an impact on their social interactions. Considering intentionality to participate in a PE programme, the patients were significantly younger, had a shorter duration of the disease, more frequently had disabled status, reported more fatigue, more self-reported symptoms and a poorer QoL. Two clusters of patients could be individualised, with one group including 75 (59%) patients presenting a higher global impact of the disease, including a more severe impairment for the scores of the perceptual, emotional and infra-cognitive spheres, worse physical QoL, and a higher intentionality to participate in a PE programme. Our study described an SS population in terms of the different spheres of an allosteric model applicable to the practice of PE. A cluster of patients appeared to present more impact of the disease and more intentionality to participate in a programme of PE. There was no difference between the two groups in terms of the cognitive sphere (i.e. knowledge of the disease), thus indicating that motivation to participate in a PE programme is influenced by non-cognitive factors. Considering intentionality to participate in a PE programme, duration disease, age of the patient and QoL should be more considered to propose to patients to participate in a PE programme. Use of the allosteric model appears promising for future research in PE.