https://orcid.org/0000-0002-3281-1970
Abstract
Purpose
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.
Ethics Approval
The study was approved by the Institutional review board (Comité de protection des personnes ouest IV – Nantes).
Acknowledgments
We thank the patients and healthcare professionals who participated in the group, and Stéphanie Poupon-Bourdy for study coordination. We also thank Hélène Boyer and Shanez Haouari Hospices Civils de Lyon) for help in manuscript preparation.
Author Contributions
All authors made a significant contribution to the work reported, whether that is in the conception, study design, execution, acquisition of data, analysis and interpretation, or in all these areas; took part in drafting, revising or critically reviewing the article; gave final approval of the version to be published; have agreed on the journal to which the article has been submitted; and agree to be accountable for all aspects of the work.
Disclosure
Dr Marie Viprey reports grants from DGOS, during the conduct of the study; grants from EPI-PHARE (Agence Nationale de Sécurité du Médicament et des Produits de Santé, ANSM), outside the submitted work. Dr Héloïse Rouzé reports grants from French ministry of health (Ministère chargé de la Santé, Direction de l’Hospitalisation et de l’Organisation des Soins), during the conduct of the study. The authors report no other conflict of interest related to this study.