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Therapeutic Patient Education in Cancer Pain Management: from Practice to Research: Proposals and Strategy of the French EFFADOL Program

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Abstract

In the field of cancer pain, therapeutic patient education (TPE) allows patients to develop skills to better manage their pain. In the Lower Normandy region of France, the management of pain is based on networking, thus allowing proximity and accessibility for all concerned. We have thus designed and initiated a broad five-stage research program that includes the following: (1) training for caregivers in TPE; (2) identifying the educational expectations of patients and their relatives with regard to cancer pain; (3) the design of a TPE program; (4) the evaluation of its quality; and (5) the evaluation of its effectiveness by comparative randomization. This article presents this approach and more particularly the research phases (stages 2, 4, 5) for which the objectives, the methodology, and the expected results are justified. Among the key points, particular attention is paid to the evaluation of the educational dimension that provides patients with self-efficacy to participate actively in the management of their pain, their perception of changes in relation to it and its impact. The choice of a specific assessment criterion (subscale 9 of the Brief Pain Inventory) and of the step-wedge design are thus argued. This approach, which is based on a partnership between health care professionals and researchers, aims to demonstrate the benefits provided by TPE to patients in order to enable them to better manage their pain on a daily basis.

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Acknowledgements

The authors would like to thank Prof. Khaled Meflah (Director of the Center F. Baclesse), the Espace Régional d’Education Thérapeutique (ERET) in Lower Normandy, and Dr. Loudiyi-Mehdaoui (ARS) for their support, as well as Dr. Rodrigue Deleens for his contribution to the launch of the project. We also thank the patients and representatives of the associations who contributed to the design of this project and in particular Jocelyne Padéri (Association Francophone pour Vaincre les Douleurs) for her attentive and thoughtful involvement. All the patients and their relatives who have accepted (step 2) and will accept (steps 4 and 5) to participate in the clinical trials implemented within this broad research program are also thanked. We also thank Ray Cooke for help in editing the article.

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Correspondence to Virginie Prevost.

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The authors are grateful for the financial support of the Apicil Foundation and the ARDCOM (stage 1), the TAKEDA company (stage 2), the Departmental Committee of the Ligue contre le Cancer in Lower Normandy (step 4), and INCa (Invitation to tender RISP15-007_FP, stage 5).

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The authors declare that they have no conflicts of interest.

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Prevost, V., Clarisse, B., Heutte, N. et al. Therapeutic Patient Education in Cancer Pain Management: from Practice to Research: Proposals and Strategy of the French EFFADOL Program. J Canc Educ 33, 1355–1361 (2018). https://doi.org/10.1007/s13187-017-1258-8

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