Evidence map›Paper›PMID 30049701›Full record

Observational studyBMJ open2018

Determinants of adherence and consequences of the transition from adolescence to adulthood among young people with severe haemophilia (TRANSHEMO): study protocol for a multicentric French national observational cross-sectional study.

Noémie Resseguier, Natacha Rosso-Delsemme, Any Beltran Anzola, Karine Baumstarck, Vanessa Milien, Laurent Ardillon, Sophie Bayart, Claire Berger, Marie-Anne Bertrand, Christine Biron-Andreani and 45 more

Registry-linked trialOpen access · goldAbstract readMulticenter StudyObservational Study
In one paragraph

Observational study in BMJ open, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT02866526 (Determinants and Consequences of the Transition to Adulthood Among Adolescents With Haemophilia - TRANSHEMO), which is not on this map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
3.0field-weighted citation impact, top 9% 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.

NCT02866526 completednot on this map

Determinants and Consequences of the Transition to Adulthood Among Adolescents With Haemophilia - TRANSHEMO

TypeobservationalSponsorAssistance Publique Hopitaux De MarseilleRan2017 to 2019Enrolled277ConditionsHaemophiliaArmsPatient questionnaire
3 · Its place in the literature

Who cites it

1 citing paper in PubMed, 10 citations in OpenAlex.

  1. 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

55 authors at 20 institutions in 1 country.

Noémie ResseguierCERESS, Aix Marseille University, Marseille, France.ORCID 0000-0003-0816-4053
Natacha Rosso-DelsemmeLPCPP, Aix Marseille Unviersity, Aix-en-Provence, France.
Any Beltran AnzolaCERESS, Aix Marseille University, Marseille, France.
Karine BaumstarckCERESS, Aix Marseille University, Marseille, France.
Vanessa MilienDepartment of Paediatric Haematology, Children Hospital La Timone, , APHM, Marseille, France.
Laurent ArdillonHaemophilia Treatment Centre, University Hospital of Tours, Tours, France.
Sophie BayartHaemophilia Treatment Centre, University Hospital of Rennes, Rennes, France.
Claire BergerHaemophilia Treatment Centre, University Hospital of Saint-Etienne, Saint-Etienne, France.
Marie-Anne BertrandHaemophilia Treatment Centre, University Hospital of Besançon, Besançon, France.
Christine Biron-AndreaniHaemophilia Treatment Centre, University Hospital of Montpellier, Montpellier, France.
Annie Borel-DerlonHaemophilia Treatment Centre, University Hospital of Caen, Caen, France.
Sabine CastetHaemophilia Treatment Centre, University Hospital of Bordeaux, Bordeaux, France.
Pierre ChamouniHaemophilia Treatment Centre, University Hospital of Rouen, Rouen, France.
Ségolène Claeyssens DonadelHaemophilia Treatment Centre, University Hospital of Toulouse, Toulouse, France.
Emmanuelle De RaucourtHaemophilia Treatment Centre, Hospital of Versailles, Versailles, France.
Dominique DesprezHaemophilia Treatment Centre, University Regional Hospital of Strasbourg, Strasbourg, France.
Céline FalaiseDepartment of Paediatric Haematology, Children Hospital La Timone, , APHM, Marseille, France.
Birgit FrotscherHaemophilia Treatment Centre, University Hospital of Nancy, Nancy, France.
Valérie GayHaemophilia Treatment Centre, Hospital of Chambery, Chambery, France.
Jenny GoudemandHaemophilia Treatment Centre, University Regional Hospital of Lille, Lille, France.
Yves GruelHaemophilia Treatment Centre, University Hospital of Tours, Tours, France.
Benoît GuilletHaemophilia Treatment Centre, University Hospital of Rennes, Rennes, France.
Annie HarrocheHaemophilia Treatment Centre, Hospital Necker, Assistance Publique-Hopitaux de Paris, Paris, France.
Abel HassounHaemophilia Treatment Centre, Hospital of Simone Veil d'Eaubonne, Montmorency, France.
Yoann HugueninHaemophilia Treatment Centre, University Hospital of Bordeaux, Bordeaux, France.
Thierry LambertHaemophilia Treatment Centre, Hospital Bicêtre, Assistance Publique-Hopitaux de Paris, Paris, France.
Aurélien LebretonHaemophilia Treatment Centre, University Hospital of Clermont-Ferrand, Clermont-Ferrand, France.
Anne LienhartHaemophilia Treatment Centre, Hospital Edouard Herriot, University Hospital of Lyon, Lyon, France.
Michèle MartinHaemophilia Treatment Centre, University Hospital of Nancy, Nancy, France.
Sandrine MeunierHaemophilia Treatment Centre, Hospital Edouard Herriot, University Hospital of Lyon, Lyon, France.
Fabrice MonpouxHaemophilia Treatment Centre, University Hospital of Nice, Nice, France.
Guillaume MoureyHaemophilia Treatment Centre, University Hospital of Besançon, Besançon, France.
Claude NegrierHaemophilia Treatment Centre, Hospital Edouard Herriot, University Hospital of Lyon, Lyon, France.
Philippe NguyenHaemophilia Treatment Centre, University Hospital of Reims, Reims, France.
Placide NyombeHaemophilia Treatment Centre, University Hospital of Reunion, Reunion Island, France.
Caroline OudotHaemophilia Treatment Centre, University Hospital of Limoges, Limoges, France.
Brigitte Pan-PeteschHaemophilia Treatment Centre, University Hospital of Brest, Brest, France.
Benoît PolackHaemophilia Treatment Centre, University Hospital of Grenoble, Grenoble, France.
Anne RafowiczHaemophilia Treatment Centre, Hospital of Versailles, Versailles, France.
Antoine RauchHaemophilia Treatment Centre, University Regional Hospital of Lille, Lille, France.
Delphine RivaudHaemophilia Treatment Centre, University Hospital of Reunion, Reunion Island, France.
Pascale SchneiderHaemophilia Treatment Centre, University Hospital of Rouen, Rouen, France.
Alexandra SpiegelHaemophilia Treatment Centre, University Regional Hospital of Strasbourg, Strasbourg, France.
Cecile StovenHaemophilia Treatment Centre, University Hospital of Reunion, Reunion Island, France.
Brigitte TardyHaemophilia Treatment Centre, University Hospital of Saint-Etienne, Saint-Etienne, France.
Marc TrossaërtHaemophilia Treatment Centre, University Hospital of Nantes, Nantes, France.
Jean-Baptiste ValentinHaemophilia Treatment Centre, University Hospital of Tours, Tours, France.
Stéphane VanderbeckenHaemophilia Treatment Centre, University Hospital of Reunion, Reunion Island, France.
Fabienne VolotHaemophilia Treatment Centre, University Hospital of Dijon, Dijon, France.
Annelise Voyer-EbrardHaemophilia Treatment Centre, University Hospital of Amiens, Amiens, France.
Bénédicte WibautHaemophilia Treatment Centre, University Regional Hospital of Lille, Lille, France.
Tanguy LeroyCERESS, Aix Marseille University, Marseille, France.
Thomas SannieFrench Patients' Association for People with Haemophilia (AFH), Paris, France.
Hervé ChambostDepartment of Paediatric Haematology, Children Hospital La Timone, , APHM, Marseille, France.
Pascal AuquierCERESS, Aix Marseille University, Marseille, France.
Aix-Marseille Université · FRCentre Hospitalier Universitaire de La Réunion · FRHôpital de la Timone · FRAssistance Publique – Hôpitaux de Paris · FRHospices Civils de Lyon · FRUniversité de Lille · FRUniversité de Tours · FRCentre Hospitalier Régional et Universitaire de Nancy · FRCentre Hospitalier Universitaire de Besançon · FRCentre Hospitalier Universitaire de Rennes · FRCentre Hospitalier Universitaire de Saint-Étienne · FRUniversité de Strasbourg · FRAssociation Francaise contre les Myopathies · FRCentre Hospitalier de Versailles · FRCentre Hospitalier Métropole Savoie · FRCentre Hospitalier Régional Universitaire de Brest · FRCentre Hospitalier Universitaire Amiens-Picardie · FRCentre Hospitalier Universitaire de Clermont-Ferrand · FRCentre Hospitalier Universitaire de Grenoble · FRCentre Hospitalier Universitaire de Montpellier · FR

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionSevere haemophilia is a rare disease characterised by spontaneous bleeding from early childhood, which may lead to various complications, especially in joints. It is nowadays possible to avoid these complications thanks to substitutive therapies for which the issue of adherence is major. The transition from adolescence to adulthood in young people with severe haemophilia is a critical period as it is associated with a high risk of lack of adherence to healthcare, which might have serious consequences on daily activities and on quality of life. METHODS AND ANALYSIS: We present the protocol for a cross-sectional, observational, multicentric study to assess the differences between adolescents and young adults with severe haemophilia in France through the transition process, especially on adherence to healthcare. This study is based on a mixed methods design, with two complementary and consecutive phases, comparing data from a group of adolescents (aged 14-17 years) with those from a group of young adults (aged 20-29 years). The quantitative phase focuses on the determinants (medical, organisational, sociodemographic and social and psychosocial and behavioural factors) of adherence to healthcare (considered as a marker of the success of transition). The qualitative phase explores participants' views in more depth to explain and refine the results from the quantitative phase. Eligible patients are contacted by the various Haemophilia Treatment Centres participating in the French national registry FranceCoag. ETHICS AND DISSEMINATION: The study was approved by the French Ethics Committee and by the French National Agency for Medicines and Health Products Safety (number: 2016-A01034-47). Study findings will be disseminated to the scientific and medical community in peer-reviewed journals and presented at scientific meetings. Results will be popularised to be communicated via the French association for people with haemophilia to participants and to the general public. TRIAL REGISTRATION NUMBER: NCT02866526; Pre-results.

Indexed as

Transition to Adult CareAcademic PerformanceAdolescentAdultAttitude to HealthCross-Sectional StudiesFamily RelationsFemaleFranceHemophilia AHumansMalePatient SatisfactionProtective FactorsQualitative ResearchQuality of Lifeadherenceadolescentshaemophiliatransitionyoung adults

Identifiers

PMID30049701
PMCPMC6067371
OpenAlexW2884317138

What OpenQuestion holds

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LicenceCC BY-NC
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Registered trials

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.