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Femke van Schelven, Eline van der Meulen, Elise Wessels & Hennie R Boeije. (2023) Let Us Talk Treatment: Using a Digital Body Map Tool to Examine Treatment Burden and Coping Strategies Among Young People with a Chronic Condition. Patient Preference and Adherence 17, pages 517-529.
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Jane S. Lucas, Mikkel Christian Alanin, Samuel Collins, Amanda Harris, Helle Krogh Johansen, Kim G Nielsen, Jean Francois Papon, Phil Robinson & Woolf T. Walker. (2017) Clinical care of children with primary ciliary dyskinesia. Expert Review of Respiratory Medicine 11:10, pages 779-790.
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Ana-Carolina Vieira Gonçalves, Cristina Isabel Oliveira Jácome, Sara Holtum Demain, Katherine J. Hunt & Alda Sofia Pires de Dias Marques. (2017) Burden of treatment in the light of the international classification of functioning, disability and health: a “best fit” framework synthesis. Disability and Rehabilitation 39:13, pages 1253-1261.
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Articles from other publishers (14)
Julie Blamires, Annette Dickinson, Catherine A Byrnes & El Shadan Tautolo. (2022) Sore and tired. A qualitative study exploring the symptom experience of youth with bronchiectasis. Journal of Child Health Care 27:4, pages 587-598.
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Valentina Agnese Ferraro, Raimondo Junior Castaldo, Valentina Tonazzo, Stefania Zanconato & Silvia Carraro. (2023) Lung Function in Children with Primary Ciliary Dyskinesia. Children 10:2, pages 290.
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Jane S. Lucas, Katharine C. Pike, Woolf T. Walker & Amelia Shoemark. 2023. Orphan Lung Diseases. Orphan Lung Diseases
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Yin Ting Lam, Eva S. L. Pedersen, Leonie D. Schreck, Leonie Hüsler, Helena Koppe, Fabiën N. Belle, Christian Clarenbach, Philipp Latzin, Claudia E. Kuehni & Myrofora Goutaki. (2022) Physical activity, respiratory physiotherapy practices, and nutrition among people with primary ciliary dyskinesia in Switzerland – a cross-sectional survey. Swiss Medical Weekly 152:3334, pages w30221.
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Corine Driessens, Siobhan Carr, Edel Clough, Fiona Copeland, Sharon Dell, Lucy Dixon, Amanda Harris, Rebecca Knibb, Margaret Leigh, Manjith Narayanan, Beatrice Redfern, Evie Robson, Michael Sawras, Lynne Schofield, Kelli Sullivan, Myra Tipping, Nhu Tran, Woolf Walker, Jane S. Lucas & Laura Behan. (2022) The Impact on Parents of Diagnosing PCD in Young Children. Journal of Clinical Medicine 11:16, pages 4774.
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Hazal Sonbahar‐Ulu, Aslihan Cakmak, Deniz Inal‐Ince, Naciye Vardar‐Yagli, Ilker Yatar, Ebru Calik‐Kutukcu, Melda Saglam, Haluk Tekerlek, Cemile Bozdemir‐Ozel, Hulya Arikan, Nagehan Emiralioglu & Ugur Ozcelik. (2022) Physical fitness and activities of daily living in primary ciliary dyskinesia: A retrospective study. Pediatrics International 64:1.
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Dilber Ademhan Tural, Nagehan Emiralioglu, Selma Tural Hesapcioglu, Sevilay Karahan, Beste Ozsezen, Birce Sunman, Halime Nayir Buyuksahin, Ebru Yalcin, Deniz Dogru, Ugur Ozcelik & Nural Kiper. (2020) Psychiatric and general health effects of COVID‐19 pandemic on children with chronic lung disease and parents' coping styles. Pediatric Pulmonology 55:12, pages 3579-3586.
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Julia Wallmeier, Kim G. Nielsen, Claudia E. Kuehni, Jane S. Lucas, Margaret W. Leigh, Maimoona A. Zariwala & Heymut Omran. (2020) Motile ciliopathies. Nature Reviews Disease Primers 6:1.
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Laura Behan, Margaret W. Leigh, Sharon D. Dell, Alexandra L. Quittner, Claire Hogg & Jane S. Lucas. (2019) Validation of pediatric health‐related quality of life instruments for primary ciliary dyskinesia (QOL‐PCD). Pediatric Pulmonology 54:12, pages 2011-2020.
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Jane S. Lucas, Florian Gahleitner, Adelina Amorim, Mieke Boon, Philippa Brown, Carolina Constant, Simon Cook, Suzanne Crowley, Damien M.S. Destouches, Ernst Eber, Huda Mussaffi, Eric Haarman, Amanda Harris, Cordula Koerner-Rettberg, Claudia E. Kuehni, Philipp Latzin, Michael R. Loebinger, Natalie Lorent, Bernard Maitre, Antonio Moreno-Galdó, Kim G. Nielsen, Uğur Özçelik, Lue Katrine Drasbæk Philipsen, Petr Pohunek, Eva Polverino, Jessica Rademacher, Phil Robinson, Deborah Snijders, Panayiotis Yiallouros & Siobhán B. Carr. (2019) Pulmonary exacerbations in patients with primary ciliary dyskinesia: an expert consensus definition for use in clinical trials. ERJ Open Research 5:1, pages 00147-2018.
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Lynne Marie Schofield, Alistair Duff & Cathy Brennan. (2018) Airway Clearance Techniques for Primary Ciliary Dyskinesia; is the Cystic Fibrosis literature portable?. Paediatric Respiratory Reviews 25, pages 73-77.
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Laura Behan, Bruna Rubbo, Jane S. Lucas & Audrey Dunn Galvin. (2017) The patient’s experience of primary ciliary dyskinesia: a systematic review. Quality of Life Research 26:9, pages 2265-2285.
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Jane S. Lucas, Laura Behan, Audrey Dunn Galvin, Adrianne Alpern, Anjana M. Morris, Mary P. Carroll, Michael R. Knowles, Margaret W. Leigh & Alexandra L. Quittner. (2015) A quality-of-life measure for adults with primary ciliary dyskinesia: QOL–PCD. European Respiratory Journal 46:2, pages 375-383.
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Sara Demain, Ana-Carolina Gonçalves, Carlos Areia, Rúben Oliveira, Ana Jorge Marcos, Alda Marques, Ranj Parmar & Katherine Hunt. (2015) Living With, Managing and Minimising Treatment Burden in Long Term Conditions: A Systematic Review of Qualitative Research. PLOS ONE 10:5, pages e0125457.
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