How can clinical practice guidelines be adapted to facilitate shared decision making? A qualitative key-informant study

Trudy van der Weijden; Arwen H Pieterse; Marije S Koelewijn-van Loon; Loes Knaapen; France Légaré; Antoine Boivin; Jako S Burgers; Anne M Stiggelbout; Marjan Faber; Glyn Elwyn

doi:10.1136/bmjqs-2012-001502

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How can clinical practice guidelines be adapted to facilitate shared decision making? A qualitative key-informant study

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Adaptation in French oncology practice guidelines to patients: patient versions and patient involvement in the development process of guidelines
Julien Carretier
Published on: 13 May 2016

Published on: 13 May 2016
Adaptation in French oncology practice guidelines to patients: patient versions and patient involvement in the development process of guidelines
- Julien Carretier, Responsible Public Information
- Other Contributors:
  Nora Moumjid, Thierry Philip and Beatrice Fervers
While Clinical Practice Guidelines (CPGs) have gained momentum to inform evidence-based practices, less investment has been made to use CPGs to support evidence-informed patient choice. The qualitative study by van der Weijden et al. shows a consensual vision of the need for and benefice of adapting CPGs into relevant patient versions to integrate patients' preferences in clinical decision-making. While we agree with the...
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While Clinical Practice Guidelines (CPGs) have gained momentum to inform evidence-based practices, less investment has been made to use CPGs to support evidence-informed patient choice. The qualitative study by van der Weijden et al. shows a consensual vision of the need for and benefice of adapting CPGs into relevant patient versions to integrate patients' preferences in clinical decision-making. While we agree with the authors' conclusions and the suggested so-called generic strategy in principle, we would like to comment the proposed approach from the French perspective of CPG development and shared decision-making (SDM). Doing so, we respond to a major limitation stressed by Weijden et al. stemming from the fact that the results reflect merely an anglo-saxon perspective. Examination of non-adherence to practice guidelines of the French oncology guidelines program "Standards, Options, Recommendations" (SOR) established in 1993 by the National French Federation of Comprehensive Cancer Centres,?1? revealed that diverging patient values and preferences may hamper guideline adherence. This observation has led to two developments we would like to share here: the development of patient versions of SOR CPGs, and cancer patients' involvement in the development process of SOR CPGs.
To improve patients' involvement in decision-making, participants interviewed by the authors suggested translating CPG reports into lay terminology useful to professionals and patients. Such an approach has been implemented within the SOR program since 1999. It is based on an interdisciplinary working group (clinicians, methodologists, psychologists, linguist, anthropologist) and a triangulation of methods to involve cancer patients, combining focus groups, semi-structured interviews and postal surveys. We translated the SOR CPGs into patient versions in more than twenty cancer sites. An innovative linguistic approach was used to ensure that the information provided is adapted to patients' health literacy. A list of generic questions that patients may ask to health professionals was developed to support patient-centered communication during the medical encounter and encourage SDM,?2?. As was pointed out by Weijden et al., patient involvement in the development of SOR patient versions let us to the awareness that SOR CPGs did not adequately incorporate patient preferences, in particular the presentation of treatment options, their benefits and risks. Consequently, we set up in 2003 a process to involve cancer patients in the development of these guidelines,?3?. Our approach consisted in a cancer patient panel reviewing the guideline draft and feeding back their comments and recommendations to the guideline panel. Our approach allowed the patient group to formulate a list of key recommendations from their perspective to be addressed in the final guideline, and to point out situations most appropriate for SDM. Patients stressed the importance of improved communication and information to facilitate patient participation in the decision-making process.
Based on our experience, we hypothesize that CPGs can be adapted to facilitate the integration of patients' preferences in clinical decision- making. The French experience suggests that the consensual 'generic' strategy proposed by the authors is applicable beyond the anglo-saxon context of their study and provide a practical example of how the proposed approaches could be translated within existing guideline programs. Recent French institutional initiatives highlight a growing awareness of the need to improve connection between CPGs, patient decision aids and SDM,?4-5?.
Developing and updating high quality CPGs and patient decision support tools require substantial time, expertise and resources. We support the author's view that it is preferable to adapt existing CPGs rather than developing new patient decision support tools. Such approaches may foster the integration of research evidence and individual preferences in health care decisions, avoid duplication of effort and enhance efficiency. Further research is needed to assess the impact on clinical practice of such approaches.
Bibliography
1. Fervers B, Hardy J, Philip T. ? Standards, Options and Recommendations ?. Clinical Practice Guidelines for cancer care from the French National Federation of Cancer Centres (FNCLCC). Br J Cancer 2001; 84(Suppl2):1-92.
2. Fervers B, Leichtnam-Dugarin L, Carretier J, Delavigne V, Hoarau H, Brusco S, Philip T. The SOR SAVOIR PATIENT project--an evidence-based patient information and education project. Br J Cancer. 2003 Aug; 89 Suppl 1:S111-6.
3. Fervers B, Bataillard A, Carretier J, Kelson M. Involving cancer patients in clinical practice guidelines (CPGs) development in a French guidelines program: What are the key issues? Journal of Clinical Oncology, 2006 ASCO Annual Meeting Proceedings (Post-Meeting Edition).Vol 24, No 18S (June 20 Supplement), 2006: 16029.
4. Haute Autorite de Sante (Health National Authority). Etat des lieux. Patient et professionnels de sante : decider ensemble. Concept, aides destinees aux patients et impact de la decision medicale partageee, octobre 2013. http://www.has- sante.fr/portail/upload/docs/application/pdf/2013- 10/12iex04_decision_medicale_partagee_mel_vd.pdf
5. Cnamts (National Health Insurance Fund). Ameliorer la qualite du systeme de sante et maitriser les depenses : propositions de l'Assurance maladie pour 2014. Rapport au ministre charge de la securite sociale et au Parlement sur l'evolution des charges et des produits de l'Assurance maladie au titre de 2014 (loi du 13 aout 2004), juillet 2013. http://www.ameli.fr/fileadmin/user_upload/documents/cnamts_rapport_charges_produits_2014.pdf
Conflict of Interest:
None declared
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Conflict of Interest:
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