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3. Bridging the gap: Survey highlights challenges and solutions in outreach and identification of people with inherited bleeding disorders

Author

Hagembe, Juliana, primary, Baumann, Alain, additional, Santaella, Maria E., additional, Sannie, Thomas, additional, Lambert, Catherine, additional, Cruickshank, Anne Louise, additional, Gaitan‐Fitch, Carlos, additional, Suwantaroj, Ekawat, additional, Garrido, Cesar, additional, and Mekhuzla, Salome, additional

Published
2023
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4. P1672: OCCUPATIONAL INTEGRATION OF ADULTS WITH SEVERE HAEMOPHILIA (INTHEMO): A STUDY BASED ON THE FRANCECOAG REGISTRY

Author

Nguyen, Ngoc Anh Thu, primary, Auquier, Pascal, additional, Anzola, Any Beltran, additional, D’oiron, Roseline, additional, Lambert, Thierry, additional, Falaise, Céline, additional, Biron, Christine, additional, Lienhart, Anne, additional, Goudemand, Jenny, additional, Rauch, Antoine, additional, Wibaut, Bénédicte, additional, Castet, Sabine Marie, additional, Desprez, Dominique, additional, Harroche, Annie, additional, Stieltjes, Natalie, additional, Borel-Derlon, Annie, additional, Trossaërt, Marc, additional, Celli, Amandine, additional, Guillet, Benoît, additional, Bayart, Sophie, additional, Bertrand, Marie-Anne, additional, Fournel, Alexandra, additional, Mourey, Guillaume, additional, Gay, Valérie, additional, Chamouni, Pierre, additional, Raucourt, Emmanuelle DE, additional, Frotscher, Birgit, additional, Martin, Michèle, additional, Puyade, Mathieu, additional, Tardy, Brigitte, additional, Vanderbecken, Stéphane, additional, Genre-Volot, Fabienne, additional, Nguyen, Philippe, additional, Polack, Benoît, additional, Oudot-Challard, Caroline, additional, Girault, Stéphane, additional, Voyer, Annelise, additional, Lebreton, Aurélien, additional, Hassoun, Abel, additional, Moreau, Philippe, additional, Rohrlich, Pierre-Simon, additional, Baumstarck, Karine, additional, Boucekine, Mohamed, additional, Milien, Vanessa, additional, Rosso, Natacha, additional, Tabele, Clemence, additional, Viprey, Marie, additional, Giraud, Nicolas, additional, Sannie, Thomas, additional, Chambost, Hervé, additional, and Resseguier, Noémie, additional

Published
2023
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6. Medico-economic Evaluation of Healthcare Products. Methodology for Defining a Significant Impact on French Health Insurance Costs and Selection of Benchmarks for Interpreting Results

Author

Dervaux, Benoît, Baseilhac, Eric, Fagon, Jean-Yves, Biot, Claire, Blachier, Corinne, Braun, Eric, Debroucker, Frédérique, Detournay, Bruno, Ferretti, Carine, Granger, Muriel, Jouan-Flahault, Chrystel, Lussier, Marie-Dominique, Meyer, Arlette, Muller, Sophie, Pigeon, Martine, De Sahb, Rima, Sannié, Thomas, Sapède, Claudine, and Vray, Muriel

Published
2014
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7. Évaluation médico-économique des produits de santé. Méthodologie pour la définition d’un impact significatif sur les dépenses de l’Assurance maladie et choix des référentiels pour l’interprétation des résultats

Author

Dervaux, Benoît, Baseilhac, Eric, Fagon, Jean-Yves, Biot, Claire, Blachier, Corinne, Braun, Eric, Debroucker, Frédérique, Detournay, Bruno, Ferretti, Carine, Granger, Muriel, Jouan-Flahault, Chrystel, Lussier, Marie-Dominique, Meyer, Arlette, Muller, Sophie, Pigeon, Martine, De Sahb, Rima, Sannié, Thomas, Sapède, Claudine, and Vray, Muriel

Published
2014
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10. 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

Author

Resseguier, Noémie, primary, Rosso-Delsemme, Natacha, additional, Beltran Anzola, Any, additional, Baumstarck, Karine, additional, Milien, Vanessa, additional, Ardillon, Laurent, additional, Bayart, Sophie, additional, Berger, Claire, additional, Bertrand, Marie-Anne, additional, Biron-Andreani, Christine, additional, Borel-Derlon, Annie, additional, Castet, Sabine, additional, Chamouni, Pierre, additional, Claeyssens Donadel, Ségolène, additional, De Raucourt, Emmanuelle, additional, Desprez, Dominique, additional, Falaise, Céline, additional, Frotscher, Birgit, additional, Gay, Valérie, additional, Goudemand, Jenny, additional, Gruel, Yves, additional, Guillet, Benoît, additional, Harroche, Annie, additional, Hassoun, Abel, additional, Huguenin, Yoann, additional, Lambert, Thierry, additional, Lebreton, Aurélien, additional, Lienhart, Anne, additional, Martin, Michèle, additional, Meunier, Sandrine, additional, Monpoux, Fabrice, additional, Mourey, Guillaume, additional, Negrier, Claude, additional, Nguyen, Philippe, additional, Nyombe, Placide, additional, Oudot, Caroline, additional, Pan-Petesch, Brigitte, additional, Polack, Benoît, additional, Rafowicz, Anne, additional, Rauch, Antoine, additional, Rivaud, Delphine, additional, Schneider, Pascale, additional, Spiegel, Alexandra, additional, Stoven, Cecile, additional, Tardy, Brigitte, additional, Trossaërt, Marc, additional, Valentin, Jean-Baptiste, additional, Vanderbecken, Stéphane, additional, Volot, Fabienne, additional, Voyer-Ebrard, Annelise, additional, Wibaut, Bénédicte, additional, Leroy, Tanguy, additional, Sannie, Thomas, additional, Chambost, Hervé, additional, and Auquier, Pascal, additional

Published
2018
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11. Determinants of adherence and consequences of the transition from adolescence to adulthood among young people with severe haemophilia (TRANSHEMO): A multicentric French national observational cross-sectional study based on the FranceCoag registry.

Author

Nguyen NAT, Auquier P, Beltran Anzola A, Harroche A, Castet S, Huguenin Y, Meunier S, Repesse Y, D'Oiron R, Rauch A, Desprez D, Spiegel A, Chamouni P, Schneider P, Baumstarck K, Boucekine M, Tabele C, Viprey M, Leroy T, Roques MA, Sannie T, Giraud N, Chambost H, and Resseguier N

Subjects
Young Adult, Humans, Child, Adolescent, Cross-Sectional Studies, Surveys and Questionnaires, Chronic Disease, Hemophilia A therapy, Hemophilia A drug therapy, Transition to Adult Care
Abstract

Introduction: It is necessary to gain insights into adherence to healthcare in people with severe haemophilia (PwSH), especially during the transition from paediatric to adult care, which is an important phase in lives of young people with childhood chronic disease. This adherence can be considered as a marker of successful transition., Objectives: The main objective of the quantitative phase of the TRANSHEMO project was to compare the adherence to healthcare between adolescents and young adults (YAs) with severe haemophilia. The secondary objective was to identify the determinants (facilitators and barriers) of this adherence and associations between these determinants., Methods: A multicentre, observational, cross-sectional study was conducted in 2017-2019 on PwSH aged between 14 and 17 years (adolescents) or between 20 and 29 years (YAs), included in the FranceCoag registry and having completed the questionnaires. The adherence to healthcare (treatment regimens and clinical follow-up) was compared between adolescents and YAs using the chi-squared test. The determinants of this adherence were analysed by structural equation modelling., Results: There were 277 participants, 107 adolescents, and 170 YAs. The rate of adolescents adhering to healthcare was 82.2%, while the rate of YAs was 61.2% (p < .001). The barriers to the adherence to healthcare were being YA, having repeated at least one school grade and presenting mental health concerns., Conclusion: Adolescents had better adherence to healthcare than YAs. According to the determinants enlightened in this project, targeted supportive strategies and adapted therapeutic education programs can be developed for young PwSH to facilitate their adherence to healthcare., (© 2023 John Wiley & Sons Ltd.)

Published
2023
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