Skip to main content

Advertisement

SpringerLink
Log in

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

  • Published:
Journal of Cancer Education Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2
Fig. 3

Similar content being viewed by others

Data availability

Not applicable.

Abbreviations

ARS:

French Regional Health Agency

CPU:

chronic pain units

EFFADOL:

Ensemble, Faire FAce à la Douleur [Cope together with pain]

HAS:

French National Authority for Health

HPST:

law reforming hospitals and relating to patients, health and territories

IPCEM:

Institute for Advanced Training in Medical Communication and Education

TPE:

Therapeutic patient education

URPS:

Regional Unions of Health Professionals

References

  1. Van den Beuken-van Everdingen MHJ, Hochstenbach LMJ, Joosten EAJ, Tjan-Heijnen VCG, Janssen DJA (2016) Update on prevalence of pain in patients with cancer: systematic review and meta-analysis. J Pain Symptom Manage 51:1070–1090. https://doi.org/10.1016/j.jpainsymman.2015.12.340

    Article  PubMed  Google Scholar 

  2. Livre blanc de la douleur 2017- Société Française d’Etude et de Traitement de la Douleur - https://www.sfetd-douleur.org/wp-content/uploads/2019/09/livre_blanc-2017-10-24.pdf. Accessed 10 Oct 2020

  3. World Health Organization (1998) Regional Office for Europe. Therapeutic patient education: continuing education programmes for health care providers in the field of prevention of chronic diseases: report of a WHO working group. Copenhagen: WHO Regional Office for Europe. http://www.euro.who.int/__data/assets/pdf_file/0007/145294/E63674.pdf. Accessed 10 Oct 2020

  4. HAS. Education thérapeutique du patient - définition, finalités et organisation, juin 2007- https://www.has-sante.fr/portail/upload/docs/application/pdf/etp_-_definition_finalites_-_recommandations_juin_2007.pdf. Accessed 10 Oct 2020

  5. Loi HPST. Loi n° 2009-879 du 21 juillet 2009 portant réforme de l'hôpital et relative aux patients, à la santé et aux territoires - https://www.legifrance.gouv.fr/affichTexte.do?cidTexte=JORFTEXT000020879475&categorieLien=id. Accessed 10 Oct 2020, DOI: https://doi.org/10.1007/s00066-020-01687-9

  6. Huteau ME, Berger V, Hureau M, Boucher S, Stoebner-Delbarre A (2019) Equal access to patient education in oncology in France: Myth or reality? Bull Cancer 106:1196–1198. https://doi.org/10.1016/j.bulcan.2019.08.015

    Article  PubMed  Google Scholar 

  7. Oldenmenger WH, Gearing JI, Mostovaya I, Vissers KCP, de Graeff A, Reyners AKL et al (2018) A systematic review of the effectiveness of patient-based educational interventions to improve cancer-related pain. Cancer Treat Rev 63:96–103. https://doi.org/10.1016/j.ctrv.2017.12.005

    Article  PubMed  Google Scholar 

  8. IPCEM pour le développement de l’éducation thérapeutique. http://www.ipcem.org/. Accessed 10 Oct 2020

  9. Prevost V, Clarisse B, Heutte N, Leconte A, Bisson C, Bignon R, Cauchin S, Feuillet M, Gehanne S, Gicquère M, Grach MC, Guillaumé C, le Gal C, le Garrec J, Lecaer F, Lepleux I, Millet AL, Ropartz MC, Roux N, Sep Hieng V, van Delook C, Bechet C, le Chevalier A, Delorme C (2018) Elaboration and evaluation of a therapeutic education program in cancer pain management. Bull Cancer 105:1074–1083. https://doi.org/10.1016/j.bulcan.2018.08.012

    Article  PubMed  Google Scholar 

  10. Prevost V, Delorme C, Heutte N, Leconte A, Bechet C, Licaj I et al (2019) Evaluation of patients’ needs to design and assess a patient education program in cancer pain. J Pain Res 12:1813–1823

    Article  CAS  Google Scholar 

  11. Prevost V, Heutte N, Leconte A, Licaj I, Delorme C, Clarisse B et al (2019) Effectiveness of a therapeutic patient education program in improving cancer pain management: EFFADOL, a stepped-wedge randomised controlled trial. BMC Cancer 19:673. https://doi.org/10.1186/s12885-019-5836-5

    Article  PubMed  PubMed Central  Google Scholar 

  12. Arrêté du 31 mai 2013 modifiant l'arrêté du 2 août 2010 relatif aux compétences requises pour dispenser l'éducation thérapeutique du patient - JORF n°0126 du 2 juin 2013 page 9239 texte n° 3 -https://www.legifrance.gouv.fr/affichTexte.do?cidTexte=JORFTEXT000027482106&categorieLien=id. Accessed 10 Oct 2020

  13. Plateforme Normande d'Education Thérapeutique du Patient (PLANETH PATIENT)-www.planethpatient.org/#!. Accessed 10 Oct 2020

  14. Adam R, Bond C, Murchie P (2015) Educational interventions for cancer pain. A systematic review of systematic reviews with nested narrative review of randomized controlled trials. Patient Educ Couns 98:269–282. https://doi.org/10.1016/j.pec.2014.11.003

    Article  PubMed  Google Scholar 

  15. Vion-Genovese V, Maindet C, Gillet D, Boscapomi C, Heritier S, Gauchet A, Rigolet C, Benitez L, Petrod JP, Amiel J, Baudrant M (2017) “Kit KAD” (pain support kit) — a successful regional collaboration creation of an educational tool for patients with chronic pain. Douleur Analg 30:123–127. https://doi.org/10.1007/s11724-017-0489-4

    Article  Google Scholar 

  16. Plan cancer 2014-2019: priorités et objectifs. http://www.e-cancer.fr/Plan-cancer/Plan-cancer-2014-2019-priorites-et-objectifs. Accessed 10 Oct 2020

  17. Sandrin-Berthon B (2010) Diagnostic éducatif ou bilan éducatif partagé ? Med Mal Metab 4:38–43

    Google Scholar 

  18. Mosnier-Pudar H, Hochberg-Parer G (2008) Éducation thérapeutique, de groupe ou en individuel : que choisir ? [Therapeutic education, within groups or individually, what to choose?]. Med Mal Metab 2:425–431

    Google Scholar 

  19. Valeberg BT, Miaskowski C, Paul SM, Rustøen T (2016) Comparison of oncology patients’ and their family caregivers’ attitudes and concerns toward pain and pain management. Cancer Nurs 39:328–334. https://doi.org/10.1097/NCC.0000000000000319

    Article  PubMed  Google Scholar 

  20. Coutaux A, Collin E (2017) Patient therapeutic education in a chronic pain unit: Why and how? Douleur Analg 30:141–146. https://doi.org/10.1007/s11724-017-0515-2

    Article  Google Scholar 

  21. Reach G (2017) Ethics of patient education. Douleur Analg 30:131–140. https://doi.org/10.1007/s11724-017-0508-1

    Article  Google Scholar 

  22. Haute Autorité de Santé - Education thérapeutique du patient (ETP) - Évaluation de l’efficacité et de l’efficience dans les maladies chroniques. https://www.has-sante.fr/upload/docs/application/pdf/2018-11/mc_238_actualisation_litterature_etp_vf.pdf. Accessed 10 Oct 2020

Download references

Acknowledgements

The authors express their gratitude to the nurse-doctor pairs of the Regional Pain Network in Lower Normandy and its coordination unit, thanks to which the project was able to come to fruition. The authors also thank Prof M-A Mahé (Director General of the François Baclesse Comprehensive Cancer Centre), the Normandy Regional Platform for Therapeutic Education (PLANETH patient) and Dr Loudiyi-Mehdaoui (Regional Health Agency, ARS Normandy) for their support. We also thank the patients and representatives of associations who contributed to the project. The APICIL Foundation and the ARDCOM Association (training of caregivers in TPE), the TAKEDA company (pilot study to evaluate patients' expectations in TPE), the Orne Departmental Committee of the League against Cancer (regional pilot study to evaluate the programme) and the National Cancer Institute, INCa (Call for tender RISP15-007_FP, national randomized study) are thanked for their financial support. All patients and their relatives who agreed to participate in the clinical trials implemented as part of this research programme are also acknowledged. Finally, we acknowledge Ray Cooke for copyediting the manuscript.

Funding

Step 1 of the project, which allowed the training of the nurse-doctor pairs in TPE, was funded by the APICIL Foundation and the ARDCOM. Step 2, not described in detail here, but on which identification of patients’ needs was based, was funded by the TAKEDA Company. Step 5 (NCT03297723) is supported by grants from the French National Cancer Institute (INCa, reference RISP15-007_FP/INCA_10187, Step 5) and by the French Ligue contre le cancer (Step 4). The funding agencies were not involved in the design or conduct of the study nor in the collection, management, analysis or interpretation of the data. They were not involved in the writing of the manuscript.

Author information

Authors and Affiliations

  1. Normandie univ, UNICAEN, Inserm U1086, ANTICIPE, 14000, Caen, France

    Virginie Prevost

  2. Centre François Baclesse, 14000, Caen, France

    Virginie Prevost, Claire Delorme, Alexandra Leconte, Lauriane Fourel, Maud Gicquere, Marie-Christine Grach, Franck Le Caer & Bénédicte Clarisse

  3. Centre Hospitalier Avranches-Granville, 50406, Avranches, France

    Aline Le Chevalier

Authors
  1. Virginie Prevost
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Claire Delorme
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Alexandra Leconte
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Aline Le Chevalier
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Lauriane Fourel
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Maud Gicquere
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Marie-Christine Grach
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Franck Le Caer
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Bénédicte Clarisse
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

VP, BC and AL wrote the manuscript and devised the study concept and design. All authors (VP, BC, AL, ALC, CD, LF, MG, FLC, MCG) were involved in drafting the manuscript or revising it critically for important intellectual content. VP and BC supervised the entire work. All authors have given final approval for the version to be published. Each author has participated sufficiently in the work to take public responsibility for appropriate portions of the content.

Corresponding author

Correspondence to Virginie Prevost.

Ethics declarations

Competing Interests

The authors declare that they have no competing interest.

Ethics Approval and Consent to Participate

The purpose of the present manuscript is to share our practical and clinical experience on the deployment of the EFFADOL pain education programme. Clinical research trial related to the EFFADOL programme has been already published, including the statement on ethics approval and consent to participate as follows : “This study has received ethical approval from the Comité de Protection des Personnes de Nord-Ouest III on September 2016 and was approved by the Comité Consultatif sur le Traitement de l’Information en matière de Recherche dans le domaine de la Santé on January 2017 and by the Commission Nationale de l'Informatique et des Libertés on August 2017. All patients will give their informed consent before any-study-related assessment”.

As clinical and practical experience herein presented concern health professionals involved in the deployment of the EFFADOL programme, the “ethics approval and consent to participate” is not applicable.

Consent for Publication

Not applicable.

Code availability

Not applicable.

Additional information

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Prevost, V., Delorme, C., Leconte, A. et al. Cancer Pain and Patient Education: Strategy, Implementation, Difficulties and Opportunities of EFFADOL, a Regional Collaborative Programme. J Canc Educ 37, 1089–1098 (2022). https://doi.org/10.1007/s13187-020-01924-w

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s13187-020-01924-w

Keywords

Search

Navigation