Cancer Pain and Patient Education: Strategy, Implementation, Difficulties and Opportunities of EFFADOL, a Regional Colla
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Cancer Pain and Patient Education: Strategy, Implementation, Difficulties and Opportunities of EFFADOL, a Regional Collaborative Programme Virginie Prevost 1,2 & Claire Delorme 2 & Alexandra Leconte 2 & Aline Le Chevalier 3 & Lauriane Fourel 2 & Maud Gicquere 2 & Marie-Christine Grach 2 & Franck Le Caer 2 & Bénédicte Clarisse 2 Accepted: 6 November 2020 # American Association for Cancer Education 2020
Abstract 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. Keywords Cancer pain . Pain management . Therapeutic patient education . Nursing training and research . Quality of life
Background Pain is a burden for many cancer patients with a prevalence still estimated at 50.7% for all stages of cancer [1]. Pain management must be comprehensive and multidisciplinary, and its complexity may require the use of chronic pain units (CPU) [2] where expert healthcare professionals listen to patients, assess their pain, explain its mechanisms and provide appropriate support. However, is this an adequate definition of the term ‘therapeutic education’? Initially defined by the World Health Organization [3], * Virginie Prevost [email protected] 1
Normandie univ, UNICAEN, Inserm U1086, ANTICIPE, 14000 Caen, France
2
Centre François Baclesse, 14000 Caen, France
3
Centre Hospitalier Avranches-Granville, 50406, Avranches, France
therapeutic patient education (TPE) aims, according to the French National Authority for Health (HAS), to help
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