Patient Preference and Adherence (Oct 2022)
Pediatric-Adult Care Transition: Perceptions of Adolescent and Young Adult Patients with Sickle Cell Disease and Their Healthcare Providers
Abstract
Delphine Hoegy,1– 3 Ronald Guilloux,3,4 Nathalie Bleyzac,5– 7 Alexandra Gauthier-Vasserot,7– 9 Giovanna Cannas,7,9,10 Yves Bertrand,7– 9 Claude Dussart,1,3,11 Audrey Janoly-Dumenil1,3,12 1University of Lyon, University Claude Bernard Lyon 1, Health, Systemic, Process (P2S), Research Unit 4129, Lyon, France; 2Pharmacie, Groupement Hospitalier Est, Hospices civils de Lyon, Lyon, France; 3Institut des Sciences Pharmaceutiques et Biologiques, Univ Claude Bernard Lyon 1, Univ Lyon 1, Lyon, France; 4Unité de recherche (UR) Sciences, Société, Historicité, Éducation et Pratiques (S2HEP), Univ Claude Bernard Lyon 1, Univ Lyon 1, Lyon, France; 5Equipe Mixte de Recherche (EMR) 3738, PK/PD Modeling in Oncology, Univ Claude Bernard Lyon 1, Univ Lyon 1, Lyon, France; 6Pharmacie, Hôpital Pierre Garraud, Hospices Civils de Lyon, Lyon, France; 7Centre de Référence Constitutif Syndromes Drépanocytaires Majeurs, Thalassémies et Autres Pathologies Rares du Globule Rouge et de l’Erythropoïèse, Hospices Civils de Lyon, Lyon, France; 8Institut d’Hématologie et d’Oncologie Pédiatrique de Lyon, Hospices civils de Lyon, Lyon, France; 9Laboratoire d’Excellence du Globule Rouge (Labex GR-Ex), PRES Sorbonne, Paris, France; 10Médecine Interne, Hôpital Edouard Herriot, Hospices civils de Lyon, Lyon, France; 11Pharmacie centrale, Hospices Civils de Lyon, Lyon, France; 12Pharmacie, Hopital Edouard Herriot, Hospices Civils de Lyon, Lyon, FranceCorrespondence: Delphine Hoegy, Pharmacy, Groupement Hospitalier Est, 59 boulevard Pinel, Bron, 69500, France, Tel +334 26 73 97 80, Fax +334 72 35 73 31, Email [email protected]: The pediatric-adult care transition, which takes place during adolescence, is a high-risk period for medical care adherence in chronic diseases, this encompasses treatment adherence, attending medical consultations and following healthcare advice. Studying perceptions is needed to get a more comprehensive picture of this care transition and to propose interventions to address the gaps. The authors analyzed perceptions from patients and caregivers in adolescents with sickle cell disease. Although this is the first step to improving the actual care management, to our knowledge, no study has explored perceptions from healthcare providers and compared it to patients’ perceptions. The purpose of this study was to provide an insight on the experience of adolescent and adult patients, pediatric and adult healthcare providers in the context of pediatric to adult care transition, and analyze those concerns in order to better understand medical care adherence and improve patient care.Material and Methods: Semi-structured interviews were conducted with adolescent and adult patients, as well as healthcare professionals (HCPs) in pediatric and adult departments. These interviews were audiotaped and transcribed before manual inductive content analysis.Results: A total of 15 adolescent patients, 10 adult patients, 9 pediatric HCPs and 13 adult HCPs - including 12 nurses - were interviewed. Patients and healthcare providers all agreed that the pediatric-adult care transition was poorly experienced. This was mainly due to various changes in habits, physicians, and care organization. Anticipating this transition and acquiring new skills both for patients and HCPs are essential steps for improving medical care adherence during this challenging pediatric-adult care transition.Conclusion: Propositions emerged from patients and healthcare providers to improve care and subsequently to improve medical care adherence in patients with sickle cell disease during and after the pediatric to adult care transition.Keywords: sickle cell disease, qualitative research, pediatric to adult care transition
