Evidence map›Paper›PMID 40932388›Full record

ArticleHaemophilia : the official journal of the World Federation of Hemophilia2025

Navigating the Transition From Adolescence to Adulthood Among Young People With Severe Haemophilia: The Qualitative Phase of the TRANSHEMO Project.

Marie-Anaïs Roques, Natacha Rosso-Delsemme, Amandine Celli, Ngoc Anh Thu Nguyen, Martin Postzich, Sabine Castet, Yoann Huguenin, Annie Harroche, Anne Lienhart, Sandrine Meunier and 12 more

Abstract read
In one paragraph

Article in Haemophilia : the official journal of the World Federation of Hemophilia, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
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

2 citing papers in PubMed.

  1. Article
  2. 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

22 authors.

Marie-Anaïs RoquesLPCPP / UR 3278, Laboratory of Clinical Psychology and Psychoanalysis, Aix-Marseille University, Aix-en-Provence, France.
Natacha Rosso-DelsemmeLPCPP / UR 3278, Laboratory of Clinical Psychology and Psychoanalysis, Aix-Marseille University, Aix-en-Provence, France.
Amandine CelliHaemophilia Treatment Centre, University Hospital of Nantes, Nantes, France.
Ngoc Anh Thu NguyenCEReSS / UR 3279, Center for Studies and Research on Health Services and Quality of Life, Aix Marseille University, Marseille, France.ORCID https://orcid.org/0000-0002-4840-283X
Martin PostzichCEReSS / UR 3279, Center for Studies and Research on Health Services and Quality of Life, Aix Marseille University, Marseille, France.
Sabine CastetHaemophilia Treatment Centre, University Hospital of Bordeaux, Bordeaux, France.ORCID https://orcid.org/0009-0003-5683-3933
Yoann HugueninHaemophilia Treatment Centre, University Hospital of Bordeaux, Bordeaux, France.
Annie HarrocheHaemophilia Treatment Centre, Hospital Necker, University Hospital of Paris (AP-HP), Paris, France.ORCID https://orcid.org/0000-0001-7368-4624
Anne LienhartHaemophilia Treatment Centre, Hospital Louis Pradel, University Hospital of Lyon (HCL), Bron, France.
Sandrine MeunierHaemophilia Treatment Centre, Hospital Louis Pradel, University Hospital of Lyon (HCL), Bron, France.ORCID https://orcid.org/0000-0001-6785-4332
Christine Biron-AndréaniHaemophilia Treatment Centre, University Hospital of Montpellier, Montpellier, France.ORCID https://orcid.org/0000-0002-7549-8718
Florence RousseauHaemophilia Treatment Centre, University Hospital of Montpellier, Montpellier, France.
Roseline d'OironHaemophilia Treatment Centre, Hospital Bicêtre, University Hospital of Paris (AP-HP), Paris, France.ORCID https://orcid.org/0000-0002-4843-7805
Yohann RepesséHaemophilia Treatment Centre, University Hospital of Caen, Caen, France.ORCID https://orcid.org/0000-0003-3809-3858
Clémence TabéléCEReSS / UR 3279, Center for Studies and Research on Health Services and Quality of Life, Aix Marseille University, Marseille, France.
Any Beltran AnzolaCEReSS / UR 3279, Center for Studies and Research on Health Services and Quality of Life, Aix Marseille University, Marseille, France.
Thomas SanniéFrench Association for people with Haemophilia (AFH), Paris, France.ORCID https://orcid.org/0000-0002-9220-1840
Nicolas GiraudFrench Association for people with Haemophilia (AFH), Paris, France.
Pascal AuquierCEReSS / UR 3279, Center for Studies and Research on Health Services and Quality of Life, Aix Marseille University, Marseille, France.
Hervé ChambostHaemophilia Treatment Centre, Children Hospital La Timone, University Hospital of Marseille (AP-HM), Marseille, France.
Noémie ResseguierCEReSS / UR 3279, Center for Studies and Research on Health Services and Quality of Life, Aix Marseille University, Marseille, France.
TRANSHEMO Study Group

Funding

Filière MHEMOFrench Ministry of Social Affairs and Health PREPS-15-0597
6 · The paper itself

Abstract

introductionHaemophilia causes spontaneous or prolonged bleeding due to a deficiency in clotting factor VIII (haemophilia A) or IX (haemophilia B). Although substitutive therapies and regular follow-up can prevent severe haemorrhagic events, adherence to treatment remains a challenge. Transitioning from adolescence to adulthood and from paediatric to adult care is particularly complex for young people with severe haemophilia (PwSH), as it involves gaining autonomy in health management.

objectivesThis study aimed to explore factors influencing the success of the transition process in young PwSH, with a focus on adherence to healthcare.

methodsThis qualitative study was part of the mixed-methods TRANSHEMO project. Participants were selected from the quantitative phase of the TRANSHEMO project based on two criteria: adolescents/young adults and adherent/nonadherent to healthcare. Interviews were conducted via video conferencing, transcribed, and thematically analysed to identify key themes affecting the transition process.

resultsTwenty-two interviews were conducted. Four major themes emerged as critical to transition success: (1) Care factors [continuity of care, treatment rituals, and evolving therapies]; (2) Family and social factors [support from family, friends, peers, and overprotection]; (3) Personal factors [understanding haemophilia, risk management, optimism, and coping strategies]; and (4) Autonomy [secondary benefits, independence, proactivity in disease management, and accompaniment by caregivers].

conclusionBased on the enlightened determinants, supportive strategies and patient education programs should focus on the development of autonomy, personal factors such as acquisition and application of health literacy in haemophilia care, and family factors such as support from family.

Indexed as

Hemophilia ATransition to Adult CareAdolescentAdultFemaleHumansMaleQualitative ResearchYoung Adultadherenceadolescentshaemophiliaquality of lifetransitionyoung adults

Identifiers

PMID40932388
PMCPMC12612361

What OpenQuestion holds

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Registered trials

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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.