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Patient Preference and Adherence Volume 11, 2017 - Issue

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Original Research

Flying the nest: a challenge for young adults with cystic fibrosis and their parents

Vibeke Bregnballe1 Department of Clinical Medicine, Aarhus University, AarhusCorrespondence[email protected]

Kirsten A Boisen2 Center of Adolescent Medicine, Department of Pediatric and Adolescent Medicine, Rigshospitalet, University Hospital of Copenhagen, Copenhagen

Peter Oluf Schiøtz3 Department of Pediatrics, Aarhus University Hospital, Aarhus

Tacjana Pressler4 Cystic Fibrosis Centre, Rigshospitalet, University Hospital of Copenhagen, Copenhagen

Kirsten Lomborg1 Department of Clinical Medicine, Aarhus University, Aarhus;5 Department of Public Health, Aarhus University, Aarhus, Denmark

Pages 229-236 | Published online: 13 Feb 2017

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Beverley C. Millar, Margaret McCafferty, Ciara McCann, Damian O'Neill, Jacqueline C. Rendall & John E. Moore. (2023) Cystic fibrosis: Infection prevention & control recommendations for universities, colleges and institutes of further and higher education – A practical guide. Infection, Disease & Health 28:2, pages 115-129.
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V. Vion Genovese, M. Perceval, A. Gauchet, L. Buscarlet-Jardine, N. Pinsault, B. Allenet & C. Llerena. (2022) Comment améliorer la transition au sein des CRCM : analyse des besoins des patients et de leurs parents lors de l’arrivée en service adulte. Revue des Maladies Respiratoires 39:2, pages 132-139.
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Regitze Anne Saurbrey Pals, Pernille Hviid, Bryan Cleal & Dan Grabowski. (2021) Demanding devices – Living with diabetes devices as a pre-teen. Social Science & Medicine 286, pages 114279.
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V. Vion Genovese, M. Perceval, L. Buscarlet-Jardine, N. Pinsault, A. Gauchet, B. Allenet & C. Llerena. (2021) Smoothing the transition of adolescents with CF from pediatric to adult care: Pre-transfer needs. Archives de Pédiatrie 28:4, pages 257-263.
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Véronique Vion-Genovese, Marie Cheick, Sophie Rombdalle-Balle & Catherine Llerena. (2020) Mucoviscidose, le passage vers les centres adultes. La Revue de l'Infirmière 69:257, pages 23-24.
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Nina A. Zeltner, Mendy M. Welsink-Karssies, Markus A. Landolt, Dominique Bosshard-Bullinger, Fabia Keller, Annet M. Bosch, Marike Groenendijk, Sarah C. Grünert, Daniela Karall, Beatrix Rettenbacher, Sabine Scholl-Bürgi, Matthias R. Baumgartner & Martina Huemer. (2019) Reducing complexity: explaining inborn errors of metabolism and their treatment to children and adolescents. Orphanet Journal of Rare Diseases 14:1.
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Imelda Coyne, Aisling Sheehan, Emily Heery & Alison E. While. (2019) Healthcare transition for adolescents and young adults with long‐term conditions: Qualitative study of patients, parents and healthcare professionals’ experiences. Journal of Clinical Nursing 28:21-22, pages 4062-4076.
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Ruth N. Jeminiwa, Natalie S. Hohmann & Brent I. Fox. (2019) Developing a Theoretical Framework for Evaluating the Quality of mHealth Apps for Adolescent Users: A Systematic Review. The Journal of Pediatric Pharmacology and Therapeutics 24:4, pages 254-269.
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Helen Malone, Susan Biggar, Sheila Javadpour, Zai Edworthy, Greg Sheaf & Imelda Coyne. (2019) Interventions for promoting participation in shared decision-making for children and adolescents with cystic fibrosis. Cochrane Database of Systematic Reviews 2019:6.
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V. Vion Genovese, M. Perceval, L. Buscarlet-Jardine, N. Pinsault, A. Gauchet, V. David, I. Durieu & C. Llerena. (2019) Critères de qualité pour la transition dans la mucoviscidose en France (suivi des adolescents, des familles et des équipes, pour une transition idéale en mucoviscidose – analyse des pratiques professionnelles). Revue des Maladies Respiratoires 36:5, pages 565-577.
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Imelda Coyne, Helen Malone, Emma Chubb & Alison E While. (2018) Transition from paediatric to adult healthcare for young people with cystic fibrosis: Parents’ information needs. Journal of Child Health Care 22:4, pages 646-657.
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Patience H. White, W. Carl Cooley, Alexy D. Arauz Boudreau, Mallory Cyr, Beth Ellen Davis, Deborah E. Dreyfus, Eileen Forlenza, Allen Friedland, Carol Greenlee, Marie Mann, Margaret McManus, Afaf I. Meleis & Laura Pickler. (2018) Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home. Pediatrics 142:5.
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D. Staab & C. Schwarz. (2018) Zystische FibroseCystic fibrosis. Der Internist 59:11, pages 1138-1145.
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Patience H. White & Margaret A. McManus. 2018. Health Care Transition. Health Care Transition 3 11 .

Jennifer L. Goralski, Samya Z. Nasr & Ahmet Uluer. (2017) Overcoming barriers to a successful transition from pediatric to adult care. Pediatric Pulmonology 52:S48, pages S52-S60.
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Flying the nest: a challenge for young adults with cystic fibrosis and their parents

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Flying the nest: a challenge for young adults with cystic fibrosis and their parents

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