Objective: Evaluate the quantitative and qualitative contributions of ‘resource-patients’ (RP) to a Therapeutic Patient Education program (TPE) in Parkinson’s disease (PD).
Background: TPE is a patient-centered approach, focused on patients’ needs, resources, values and strategies. It allows patients to better manage their lives with a chronic disease. TPE needs specific training of health professionals and brings a better quality of life, a greater therapeutic compliance and a reduction in complications. In most advanced programs, some ‘resource-patients’ are trained to TPE and become actors of the program dedicated to other, naive patients. This is a radical change in the way we consider the healthcare provider-patient relationship.
Method: Neurologists in a movement disorder clinic listed PD patients eligible for TPE. RP and health professionals defined altogether an information letter and a directed phone interview. After phone calls performed by RP, health professionals finalized the integration of selected patients and collected their feedback. All the process regarding confidentiality of health-related information and compliance with data protection regulations has been monitored.
Results: Over 32 selected patients who received an information letter, 2 declined further contact. Among the 30 interviewed patients, 7 declined the proposal (no need, distance) and 19 agreed to be involved in TPE programs. Feedback obtained by healthcare professionals revealed that 81% of selected patients (who have the feeling of being better understood and interact as equals) and all 4 RP have highly appreciated this innovative approach. Only 9% of them reported some uncertainty on reliability of RP. The latters were all very satisfied by the easy warm view exchanges, helping other patients and working as a team. Their commitment was strengthened. Altogether RP have recruited 15% of the cohort of PD patients involved in the program over the last year.
Conclusion: RP can provide useful participation in patients recruitment for TPE programs. Their involvement is rewarding and largely reinforced by patients naive to the program. It opens an interesting path for the promotion of TPE.
To cite this abstract in AMA style:
A.L Ramelli, M.L Fouquet, S. Vasa, P. Simoni, S. Stefanizzi, A. Petit, H. Salhi, G. Fénelon, P.h Remy. Resource patients involved in a program of therapeutic education of patients with Parkinson’s disease: contribution to patients’ recruitment [abstract]. Mov Disord. 2020; 35 (suppl 1). https://www.mdsabstracts.org/abstract/resource-patients-involved-in-a-program-of-therapeutic-education-of-patients-with-parkinsons-disease-contribution-to-patients-recruitment/. Accessed November 21, 2024.« Back to MDS Virtual Congress 2020
MDS Abstracts - https://www.mdsabstracts.org/abstract/resource-patients-involved-in-a-program-of-therapeutic-education-of-patients-with-parkinsons-disease-contribution-to-patients-recruitment/