A Participatory Approach Involving Patients with Cystic Fibrosis and Healthcare Professionals for the Co-Design of an Adherence-Enhancing Intervention Toolkit

Marie Viprey,1,2 Frédéric Mougeot,3 Alexandra Lelia Dima,2,4 Julie Haesebaert,2,5 Pauline Occelli,2,5 Isabelle Durieu,2,6 Héloïse Rouzé,2,5 Quitterie Reynaud,2,6 Sandrine Touzet2,7 1Hospices Civils de Lyon, Pôle Santé Publique, Service des Données de Santé, Lyon, France; 2Research on Healthcare Performance RESHAPE, INSERM U1290, Université Claude Bernard Lyon 1, Lyon, France; 3Centre Max Weber, UMR 5283 - ENSEIS, Villeurbanne, France; 4Health Technology Assessment in Primary Care and Mental Health (PRISMA) Research Group, Parc Sanitari Sant Joan de Déu, Institut de Recerca Sant Joan de Déu, Barcelona, Spain; 5Hospices Civils de Lyon, Pôle Santé Publique, Service Recherche et Epidémiologie Cliniques, Lyon, France; 6Hospices Civils de Lyon, Centre Hospitalier Lyon Sud, Centre de Référence Adulte de la Mucoviscidose, Pierre Bénite, France; 7Hospices Civils de Lyon, Pôle Santé Publique, Service de Santé au Travail, Lyon, FranceCorrespondence: Marie Viprey, Hospices Civils de Lyon, Service des Données de Santé, 162 Avenue Lacassagne, Lyon, 69003, France, Tel +33 4 72 11 51 39, Fax +33 4 72 11 57 20, Email marie.viprey@chu-lyon.frPurpose: Cystic fibrosis (CF) is an inherited life-shortening disease involving a significant treatment burden. Few interventions have been proven effective in improving adherence, and of these fewer have been adopted for implementation. Patient participation in research is increasingly desired in developing relevant health care services. A participatory approach was implemented in an adult CF center to co-design an adherence-enhancing intervention toolkit. We aimed to report on the participatory process and the results regarding the co-designed intervention.Patients and Methods: Two focus group sessions and four working sessions were conducted at 4-week intervals with three healthcare professionals (HCP; physician, nurse, physiotherapist), eight patients, and two researchers (sociologist, public health pharmacist). The two initial focus group sessions were dedicated to the collection of narratives about CF treatment experiences to identify drivers of adherence. The next four working sessions were dedicated to the reflection on solutions that could alleviate the difficulties identified and be used in current clinical practice. The researchers observed during all sessions the interactions between participants, group dynamics, and process of implementation of the collective reflection.Results: The process facilitated an active participation of patients and HCP, who contributed equally to the intervention development. The co-design adherence-enhancing intervention toolkit consisted in a self-questionnaire to be completed by patients before the medical consultation and used as a communication support during the consultation, plus a toolkit of solutions to be proposed by the HCP for each barrier identified by patients, and to be followed up during the next consultation.Conclusion: This study demonstrated that a participatory approach involving CF patients and HCP lead to the development of an adherence-enhancing intervention toolkit, using a 6-session format; the benefits of the co-designed intervention on the medication adherence have yet to be tested in a multicenter, open-label study in 3 centers in France.Keywords: cystic fibrosis, chronic treatment, medication adherence, patient engagement, participatory research