Cancer Pain and Patient Education: Strategy, Implementation, Difficulties and Opportunities of EFFADOL, a Regional Collaborative Programme.

While pain remains a burden for many cancer patients, their active involvement in dealing with it through therapeutic patient education (TPE) has proved effective in overcoming hurdles to pain management. This article describes how a regional TPE programme devoted to cancer pain was set up, as well as the difficulties and opportunities encountered during its implementation. Ten nurse-doctor pairs from the chronic pain units of Lower Normandy, after being trained in TPE, designed and built the EFFADOL (Ensemble Faire Face A la DOuLeur [Cope together with pain]) programme. They collaboratively developed the pedagogical, evaluation and communication tools used in the programme. After the educational diagnosis step, patients are able to follow three sessions in order to acquire the following skills: (1) understanding the different types of pain, (2) understanding pain treatments and their adverse reactions and (3) optimally managing pain on a daily basis. Patients can ask a relative to join the sessions and can choose their preferred modality (individual and/or collective sessions). Programme implementation and the importance of communicating with oncologists and independent health professionals are discussed. The programme, which is available to patients close to home, meets their needs as previously assessed through a regional prospective survey. Difficulties to include patients and opportunities to address them are identified. The programme's limitations mainly concern its organization, structure and communication issues. The main challenge remains the overhaul of care practices and the role of the caregiver to allow patient autonomy.

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

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.

[Elaboration and evaluation of a therapeutic education program in cancer pain management]. / Construction et évaluation d'un programme d'éducation thérapeutique du patient dans le domaine de la douleur liée au cancer.

Pain, one of the most feared symptoms for patients with cancer, remains insufficiently alleviated and impairs quality of life. Therapeutic patient education (TPE) is a relevant approach to this problem while allowing patients to develop skills to better manage their pain. In the "Basse-Normandie" French region, the management of pain relies on two organized networks, thus allowing proximity and accessibility for all concerned. In this context, our team has begun a broad five-step research program that is part of a regional health policy: (1) training in TPE of 10 doctor/nurse pairs; (2) identification of educational expectations of patients and their relatives in the field of cancer pain; (3) design and optimization of a TPE program dedicated to cancer pain; (4) regional pilot study aiming to assess the feasibility, quality and transferability of the program; (5) evaluation of the TPE program by interventional comparative randomization at the national level. This article aims to present the program which originality and strengths are based on collaborative work between health stakeholders. Objectives, methodology and expected results of the research phase (stages 2, 4, 5) are notably developed. The main expected outcomes are to prove the effectiveness of the program in improving the knowledge and skills of patients in the field of pain cancer in order to promote their adherence to treatment and, consequently, to enable them to better manage it. The long-term objective is to disseminate the educational approach by modifying practices that provide a mutual benefit for caregivers and patients.