Therapeutic Patient Education in Systematic Lupus Erythematosus (SLE) by Dr Baptiste Hervier & Prof Zahir Amoura, French Lupus National Reference Center, Pitié-Salpêtrière Hospital, APHP, Paris, France
Prof Zahir Amoura and Dr Baptiste Hervier introduced the topic of their presentation by defining Therapeutic Patient Education (TPE) using WHO terminology.
“TPE is designed to train patients in the skills of self-managing or adapting treatment to their particular chronic disease, and in coping processes and skills. It is essential to the efficient self-management and to the quality of care of all long-term diseases or conditions. It is education managed by health care providers trained in the education of patients, and designed to enable a patient (or a group of patients and families) to manage the treatment of their condition and prevent avoidable complications, while maintaining or improving quality of life.
Its aim is to deliver self-management, quality of life and has to be considered as part of the treatment.”
Dr Hervier discussed the process of developing the TPE program and defining topics which are based on the patient’s expectations by three main steps:
1. A Multidisciplinary workshop of health professionals (nurses, nutritionals, ) which aim was to identify topics of the TPE program
2. A Web-based questionnaire was conducted to confirm that patients agreed with topics identified by the workgroup
3. A Focus group was organized in order for patients to express their expectations about SLE
As a result, educational sessions for lupus patients were developed. Based on topics that were consistent with patients’ needs and expectations, a TPE workgroup was defined.
Further, with the help of a specialized company, pedagogic tools were developed that were used in the TPE sessions to reach educational objectives.
The final TPE program consists of different stages:
1. Educational Diagnosis (individual) - Knowing who the patient is, what he believes or knows about his disease and what he is expecting
2. Therapeutic Covenant and Define Personalized Objectives
3. Educative Group Workshops
4. Patient’s Evaluation (individual) - Diagnosis of New Needs
Currently TPE is mostly used in France with the expectation of becoming accessible in other European countries.