Evidence map›Paper›PMID 36212773›Full record

ArticlePatient preference and adherence2022

Pediatric-Adult Care Transition: Perceptions of Adolescent and Young Adult Patients with Sickle Cell Disease and Their Healthcare Providers.

Delphine Hoegy, Ronald Guilloux, Nathalie Bleyzac, Alexandra Gauthier-Vasserot, Giovanna Cannas, Yves Bertrand, Claude Dussart, Audrey Janoly-Dumenil

Open access · goldAbstract read
In one paragraph

Article in Patient preference and adherence, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
1.7field-weighted citation impact, top 16% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed, 6 citations in OpenAlex.

  1. Article
  2. Observational
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors at 3 institutions in 2 countries.

Delphine HoegyUniversity of Lyon, University Claude Bernard Lyon 1, Health, Systemic, Process (P2S), Research Unit 4129, Lyon, France.ORCID 0000-0002-8659-6073
Ronald GuillouxInstitut des Sciences Pharmaceutiques et Biologiques, Univ Claude Bernard Lyon 1, Univ Lyon 1, Lyon, France.
Nathalie BleyzacEquipe Mixte de Recherche (EMR) 3738, PK/PD Modeling in Oncology, Univ Claude Bernard Lyon 1, Univ Lyon 1, Lyon, France.
Alexandra Gauthier-VasserotCentre de Référence Constitutif Syndromes Drépanocytaires Majeurs, Thalassémies et Autres Pathologies Rares du Globule Rouge et de l'Erythropoïèse, Hospices Civils de Lyon, Lyon, France.
Giovanna CannasCentre de Référence Constitutif Syndromes Drépanocytaires Majeurs, Thalassémies et Autres Pathologies Rares du Globule Rouge et de l'Erythropoïèse, Hospices Civils de Lyon, Lyon, France.
Yves BertrandCentre de Référence Constitutif Syndromes Drépanocytaires Majeurs, Thalassémies et Autres Pathologies Rares du Globule Rouge et de l'Erythropoïèse, Hospices Civils de Lyon, Lyon, France.
Claude DussartUniversity of Lyon, University Claude Bernard Lyon 1, Health, Systemic, Process (P2S), Research Unit 4129, Lyon, France.
Audrey Janoly-DumenilUniversity of Lyon, University Claude Bernard Lyon 1, Health, Systemic, Process (P2S), Research Unit 4129, Lyon, France.
Université Claude Bernard Lyon 1 · FRInstitut d’Hématologie et d’Oncologie Pédiatrique · FRLaboratory of Excellence GR-Ex · FR

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Introduction: 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.

Indexed as

pediatric to adult care transitionqualitative researchsickle cell disease

Identifiers

PMID36212773
PMCPMC9534149
OpenAlexW4298119865

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.