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Original Research

Barriers to adherence in adolescents and young adults with cystic fibrosis: a questionnaire study in young patients and their parents

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Pages 507-515 | Published online: 11 Oct 2011

Keep up to date with the latest research on this topic with citation updates for this article.

Read on this site (9)

Elizabeth Lumley, Sarah J Drabble, Anne Scott, Martin J Wildman & Alicia O’Cathain. (2022) Objective Nebuliser Adherence Data as “Proof” of Adherence in the Management of Cystic Fibrosis: A Qualitative Interview Study. Patient Preference and Adherence 16, pages 771-780.
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Karin Bæk Knudsen, Tacjana Pressler, Laust Hvas Mortensen, Mary Jarden, Kirsten Arntz Boisen, Marianne Skov, Alexandra L Quittner & Terese Lea Katzenstein. (2017) Coach to cope: feasibility of a life coaching program for young adults with cystic fibrosis. Patient Preference and Adherence 11, pages 1613-1623.
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Vibeke Bregnballe, Kirsten A Boisen, Peter Oluf Schiøtz, Tacjana Pressler & Kirsten Lomborg. (2017) Flying the nest: a challenge for young adults with cystic fibrosis and their parents. Patient Preference and Adherence 11, pages 229-236.
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Robert W Morton, Heather E Elphick, Elaine Edwards, William J Daw & Noreen S West. (2017) Investigating the feasibility of text message reminders to improve adherence to nebulized medication in children and adolescents with cystic fibrosis. Patient Preference and Adherence 11, pages 861-869.
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Siva Narayanan, Jochen G. Mainz, Smeet Gala, Harold Tabori & Daniel Grossoehme. (2017) Adherence to therapies in cystic fibrosis: a targeted literature review. Expert Review of Respiratory Medicine 11:2, pages 129-145.
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Z. H. Hoo, J. Boote, M. J. Wildman, M. J. Campbell & B. Gardner. (2017) Determinants of objective adherence to nebulised medications among adults with cystic fibrosis: an exploratory mixed methods study comparing low and high adherers. Health Psychology and Behavioral Medicine 5:1, pages 299-316.
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Ellison D. Suthoff, Mac Bonafede, Brendan Limone, Lasair O’Callaghan, Gregory S. Sawicki & Jeffrey S. Wagener. (2016) Healthcare resource utilization associated with ivacaftor use in patients with cystic fibrosis. Journal of Medical Economics 19:9, pages 845-851.
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Stephen Jones, Nathan Babiker, Emma Gardner, Jane Royle, Rachael Curley, Zhe Hui Hoo & Martin J Wildman. (2015) Promoting adherence to nebulized therapy in cystic fibrosis: poster development and a qualitative exploration of adherence. Patient Preference and Adherence 9, pages 1109-1120.
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Alexandra R Lang, Jennifer L Martin, Sarah Sharples & John A Crowe. (2014) Medical device design for adolescent adherence and developmental goals: a case study of a cystic fibrosis physiotherapy device. Patient Preference and Adherence 8, pages 301-309.
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Articles from other publishers (48)

Sophie Dawson, Carla-Jane Girling, Lisa Cowap & David Clark-Carter. (2023) Psychological interventions for improving adherence to inhaled therapies in people with cystic fibrosis. Cochrane Database of Systematic Reviews 2023:3.
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Meghan E. McGrady, Tyler G. Ketterl, Robin E. Norris, John P. Perentesis, Daniel Pettee, Constance A. Mara, Gabriella Breen & Ahna L. H. Pai. (2023) Barriers to medication adherence among adolescents and young adults with cancer. Pediatric Blood & Cancer 70:3.
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Bianca Richards, Sonya R. Osborne & Megan Simons. (2022) Introducing a MAP for adherence care in the paediatric cystic fibrosis clinic: a multiple methods implementation study. BMC Health Services Research 22:1.
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Sandra L. Dimenäs, Anna‐Lena Östberg, Mona Lundin, Jesper Lundgren & Kajsa H. Abrahamsson. (2022) Adolescents' experiences of a theory‐based behavioural intervention for improved oral hygiene: A qualitative interview study. International Journal of Dental Hygiene 20:4, pages 609-619.
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Nicola J. Rowbotham & Tracey E. Daniels. (2021) Airway clearance and exercise for people with cystic fibrosis: Balancing longevity with life. Pediatric Pulmonology 57:S1.
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Jeffery T. Zobell, Justin Moss, Stephanie M. Heuser & Fadi Asfour. (2020) Impact of pharmacy technicians as part of an integrated health‐system pharmacy team on improvement of medication access in the care of cystic fibrosis patients. Pediatric Pulmonology 55:12, pages 3351-3357.
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Sophie Dawson, Lisa Cowap, David Clark-Carter & Carla-Jane Girling. (2020) Psychological interventions for improving adherence to inhaled therapies in people with cystic fibrosis. Cochrane Database of Systematic Reviews.
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Sarah J Drabble, Alicia O'Cathain, Alexander J Scott, Madelynne A Arden, Samuel Keating, Marlene Hutchings, Chin Maguire & Martin Wildman. (2020) Mechanisms of Action of a Web-Based Intervention With Health Professional Support to Increase Adherence to Nebulizer Treatments in Adults With Cystic Fibrosis: Qualitative Interview Study. Journal of Medical Internet Research 22:10, pages e16782.
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Mandy Jones, Fiona Moffatt, Alex Harvey & Jennifer M Ryan. (2020) Interventions for improving adherence to airway clearance treatment and exercise in people with cystic fibrosis. Cochrane Database of Systematic Reviews.
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Emma Dixon, Michele Puckey, Nicola Collins, Gemma Marsh & Rishi Pabary. (2020) Striving for perfection, accepting the reality: A reflection on adherence to airway clearance and inhalation therapy for paediatric patients with chronic suppurative lung disease. Paediatric Respiratory Reviews 34, pages 46-52.
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Rosie Martin, Madelynne Arden, Jenny Porritt, Martin Wildman & Felix Naughton. (2020) Investigating the Temporal Relationships between Symptoms and Nebuliser Adherence in People with Cystic Fibrosis: A Series of N-of-1 Observations. Healthcare 8:1, pages 22.
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Scott C Bell, Marcus A Mall, Hector Gutierrez, Milan Macek, Susan Madge, Jane C Davies, Pierre-Régis Burgel, Elizabeth Tullis, Claudio Castaños, Carlo Castellani, Catherine A Byrnes, Fiona Cathcart, Sanjay H Chotirmall, Rebecca Cosgriff, Irmgard Eichler, Isabelle Fajac, Christopher H Goss, Pavel Drevinek, Philip M Farrell, Anna M Gravelle, Trudy Havermans, Nicole Mayer-Hamblett, Nataliya Kashirskaya, Eitan Kerem, Joseph L Mathew, Edward F McKone, Lutz Naehrlich, Samya Z Nasr, Gabriela R Oates, Ciaran O'Neill, Ulrike Pypops, Karen S Raraigh, Steven M Rowe, Kevin W Southern, Sheila Sivam, Anne L Stephenson, Marco Zampoli & Felix Ratjen. (2020) The future of cystic fibrosis care: a global perspective. The Lancet Respiratory Medicine 8:1, pages 65-124.
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Alexandra L. Quittner & Ana Maria Li-Rosi. 2020. Adherence and Self-Management in Pediatric Populations. Adherence and Self-Management in Pediatric Populations 107 132 .
Marija Vita Zupanič & Alenka Škerjanc. (2019) Cystic fibrosis and career counselling. Central European Journal of Public Health 27:4, pages 279-284.
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Sarah J. Drabble, Alicia O’Cathain, Madelynne A. Arden, Marlene Hutchings, Daniel Beever & Martin Wildman. (2019) When Is Forgetting Not Forgetting? A Discursive Analysis of Differences in Forgetting Talk Between Adults With Cystic Fibrosis With Different Levels of Adherence to Nebulizer Treatments. Qualitative Health Research 29:14, pages 2119-2131.
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Arlene Smaldone, Deepa Manwani & Nancy S. Green. (2019) Greater number of perceived barriers to hydroxyurea associated with poorer health‐related quality of life in youth with sickle cell disease. Pediatric Blood & Cancer 66:7, pages e27740.
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Mukhtar Bizrah, Ammar Yusuf & Sajjad Ahmad. (2019) Adherence to Treatment and Follow-Up in Patients with Severe Chemical Eye Burns. Ophthalmology and Therapy 8:2, pages 251-259.
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Jeff Aston, Keith A. Wilson & David R. P. Terry. (2018) The treatment-related experiences of parents, children and young people with regular prescribed medication. International Journal of Clinical Pharmacy 41:1, pages 113-121.
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Joanie Sims-Gould, Douglas L. Race, Heather Macdonald, Kristin M. Houghton, Ciarán M. Duffy, Lori B. Tucker & Heather A. McKay. (2018) “I just want to get better”: experiences of children and youth with juvenile idiopathic arthritis in a home-based exercise intervention. Pediatric Rheumatology 16:1.
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D. Staab & C. Schwarz. (2018) Zystische FibroseCystic fibrosis. Der Internist 59:11, pages 1138-1145.
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Margot E. Cohen, Ariel Jaffe, Carolyn B. Strauch, Suzanne K. Lewis, Benjamin Lebwohl & Peter H.R. Green. (2018) Determinants of Follow-up Care for Patients With Celiac Disease. Journal of Clinical Gastroenterology 52:9, pages 784-788.
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A. Jakubowska-Winecka & M. Biernacka. (2018) Parental Attitudes and Medication Adherence in Groups of Adolescents After Liver and Kidney Transplantations. Transplantation Proceedings 50:7, pages 2145-2149.
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Heather S. Kirkham, Francis Staskon, Nishita Hira, Darren McLane, Karl M. Kilgore, Alexis Parente, Seung Kim & Gregory S. Sawicki. (2018) Outcome evaluation of a pharmacy-based therapy management program for patients with cystic fibrosis. Pediatric Pulmonology 53:6, pages 720-727.
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Aarti Shakkottai, Niko Kaciroti, Lauren Kasmikha & Samya Z. Nasr. (2018) Impact of home spirometry on medication adherence among adolescents with cystic fibrosis. Pediatric Pulmonology 53:4, pages 431-436.
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Otto Laub, Christine Lehmann, Thomas Spindler & Doris Staab. 2018. Jugendmedizin. Jugendmedizin 153 166 .
Rebecca Keyte, Helen Egan, Craig Jackson, Edward Nash, Anna Regan & Michail Mantzios. (2017) A weekend/weekday comparison of adherence to daily treatment regimens in adults with cystic fibrosis. Health Psychology Report 6:2, pages 146-157.
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Claudia Rouse, Punam Mistry, Oli Rayner, Jess Nickless, Mandy Wan, Kevin W Southern & Hannah K Batchelor. (2017) A mixed methods study of the administration of flucloxacillin oral liquid; identifying strategies to overcome administration issues of medicines with poor palatability. International Journal of Pharmacy Practice 25:5, pages 326-334.
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Jeffery T. Zobell, Elizabeth Schwab, Dave S. Collingridge, Cody Ball, Robert Nohavec & Fadi Asfour. (2017) Impact of pharmacy services on cystic fibrosis medication adherence. Pediatric Pulmonology 52:8, pages 1006-1012.
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Tom MunyerDanielle Alm. 2017. PharmacotherapyFirst: A Multimedia Learning Resource. PharmacotherapyFirst: A Multimedia Learning Resource.
Helen White, Nicola Shaw, Sarah Denman, Kim Pollard, Sarah Wynne & Daniel Gavin Peckham. (2017) Variation in lung function as a marker of adherence to oral and inhaled medication in cystic fibrosis. European Respiratory Journal 49:3, pages 1600987.
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Mark H. EckmanElizabeth J. KoprasKaren Montag-LeiflingLari P. KirbyLisa BurnsVeronica M. IndiharPatricia M. Joseph. (2017) Shared Decision-Making Tool for Self-Management of Home Therapies for Patients With Cystic Fibrosis. MDM Policy & Practice 2:1, pages 238146831771562.
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Aarti Shakkottai & Samya Z. Nasr. (2017) The Use of Home Spirometry in Pediatric Cystic Fibrosis Patients. Global Pediatric Health 4, pages 2333794X1769031.
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K. B. Knudsen, T. Pressler, L. H. Mortensen, M. Jarden, M. Skov, A. L. Quittner, T. Katzenstein & K. A. Boisen. (2016) Associations between adherence, depressive symptoms and health-related quality of life in young adults with cystic fibrosis. SpringerPlus 5:1.
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Paola Catastini, Serena Di Marco, Maria Furriolo, Carmela Genovese, Alessia Grande, Eugenia Iacinti, Danila Rosa Iusco, Rita Maria Vittoria Nobili, Rita Pescini, Roberto Ragni, Roberto Randazzo, Cristiana Risso, Paola Tabarini, Cesare Braggion, Salvatore De Masi & Kathleen S. McGreevy. (2016) The prevalence of anxiety and depression in Italian patients with cystic fibrosis and their caregivers. Pediatric Pulmonology 51:12, pages 1311-1319.
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Aarti Shakkottai, Kelley M. Kidwell, Monica Townsend & Samya Z. Nasr. (2015) A five-year retrospective analysis of adherence in cystic fibrosis. Pediatric Pulmonology 50:12, pages 1224-1229.
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Hanaa Banjar & Gerhild Angyalosi. (2015) The road for survival improvement of cystic fibrosis patients in Arab countries. International Journal of Pediatrics and Adolescent Medicine 2:2, pages 47-58.
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Al-Rahim R. Habib, Jamil Manji, Pearce G. Wilcox, Amin R. Javer, Jane A. BuxtonBradley S. Quon. (2015) A Systematic Review of Factors Associated with Health-Related Quality of Life in Adolescents and Adults with Cystic Fibrosis. Annals of the American Thoracic Society 12:3, pages 420-428.
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Alice Hogan, Mary-Ann Bonney, Jo-anne Brien, Rita Karamy & Parisa Aslani. (2014) Factors affecting nebulised medicine adherence in adult patients with cystic fibrosis: a qualitative study. International Journal of Clinical Pharmacy 37:1, pages 86-93.
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Gregory S. Sawicki, Karen S. Heller, Nathan Demars & Walter M. Robinson. (2015) Motivating adherence among adolescents with cystic fibrosis: Youth and parent perspectives. Pediatric Pulmonology 50:2, pages 127-136.
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Marilyn Macdonald, Ruth Martin-Misener, Melissa Helwig, Lisa Janette Smith & Christina M Godfrey. (2014) The experiences of adults with cystic fibrosis in adhering to medication regimens: a systematic review protocol. JBI Database of Systematic Reviews and Implementation Reports 12:12, pages 91-105.
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Márta Péntek, György Kosztolányi, Béla Melegh, Adrienn Halász, Gábor Pogány, Petra Baji, Valentin Brodszky, Noémi Vártokné Hevér, Imre Boncz & László Gulácsi. (2014) Health related quality of life and disease burden of patients with cystic fibrosis and their caregivers: Results of the European BURQOL-RD survey in Hungary. Orvosi Hetilap 155:42, pages 1673-1684.
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Kate Millington, Victoria Miller, Ronald C. Rubenstein & Andrea Kelly. (2014) Patient and parent perceptions of the diagnosis and management of cystic fibrosis-related diabetes. Journal of Clinical & Translational Endocrinology 1:3, pages 100-107.
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Robin S. EverhartBarbara H. FieseJoshua M. SmythAdrienne BorschukRan D. Anbar. (2014) Family Functioning and Treatment Adherence in Children and Adolescents with Cystic Fibrosis. Pediatric Allergy, Immunology, and Pulmonology 27:2, pages 82-86.
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Meghan E. McGrady, Sarah N. Williams, Stella M. Davies & Ahna L.H. Pai. (2014) Adherence to outpatient oral medication regimens in adolescent hematopoietic stem cell transplant recipients. European Journal of Oncology Nursing 18:2, pages 140-144.
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