ArticlePatient preference and adherence2011
Barriers to adherence in adolescents and young adults with cystic fibrosis: a questionnaire study in young patients and their parents.
Article in Patient preference and adherence, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 37 papers, 2 of them syntheses that pooled it.
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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.
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Who cites it
37 citing papers in PubMed, 2 syntheses or guidelines pooled it, 92 citations in OpenAlex.
- Interventions for improving adherence to airway clearance treatment and exercise in people with cystic fibrosis.The Cochrane database of systematic reviews · 2023Pooled it
- The effectiveness of interventions using electronic reminders to improve adherence to chronic medication: a systematic review of the literature.Journal of the American Medical Informatics Association : JAMIAPooled it
- Greater number of perceived barriers to hydroxyurea associated with poorer health-related quality of life in youth with sickle cell disease.Pediatric blood & cancer · 2019Trial
- A Longitudinal Study of Adherence among Cystic Fibrosis Patients: Associations with Gratitude Over the Course of One Year.International journal of behavioral medicine · 2025Article
- Associations Between Socioeconomic Status and Adherence to Medications in People With Cystic Fibrosis.Pediatric pulmonology · 2025Article
- The Role of Psychological Interventions in Enhancing Quality of Life for Patients with Cystic Fibrosis-A Systematic Review.Healthcare (Basel, Switzerland) · 2025Review
- The role and perception of the caregiver in a specialized pediatric palliative care center in medicine preparation and administration: a survey study.Italian journal of pediatrics · 2024Article
- Giving adolescents with cystic fibrosis a voice: Predicting cystic fibrosis nutritional adherence from their decision-making involvement.Journal of pediatric psychology · 2024Article
- Psychological interventions for improving adherence to inhaled therapies in people with cystic fibrosis.The Cochrane database of systematic reviews · 2023Review
- Barriers to medication adherence among adolescents and young adults with cancer.Pediatric blood & cancer · 2023Observational
- Adolescents' experiences of a theory-based behavioural intervention for improved oral hygiene: A qualitative interview study.International journal of dental hygiene · 2022Article
- Introducing a MAP for adherence care in the paediatric cystic fibrosis clinic: a multiple methods implementation study.BMC health services research · 2022Article
- Objective Nebuliser Adherence Data as "Proof" of Adherence in the Management of Cystic Fibrosis: A Qualitative Interview Study.Patient preference and adherence · 2022Article
- 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 · 2020Article
- Investigating the Temporal Relationships between Symptoms and Nebuliser Adherence in People with Cystic Fibrosis: A Series of N-of-1 Observations.Healthcare (Basel, Switzerland) · 2020Article
- 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 · 2019Article
- Adherence to Treatment and Follow-Up in Patients with Severe Chemical Eye Burns.Ophthalmology and therapy · 2019Article
- The treatment-related experiences of parents, children and young people with regular prescribed medication.International journal of clinical pharmacy · 2019Article
- [Cystic fibrosis : A new disease pattern in adult medicine].Der Internist · 2018Review
- "I just want to get better": experiences of children and youth with juvenile idiopathic arthritis in a home-based exercise intervention.Pediatric rheumatology online journal · 2018Article
Corrections and comments
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Authors and funding
5 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundTreatment adherence is crucial in patients with cystic fibrosis, but poor adherence is a problem, especially during adolescence. Identification of barriers to treatment adherence and a better understanding of how context shapes barriers is of great importance in the disease. Adolescent reports of barriers to adherence have been studied, but studies of their parents' experience of such barriers have not yet been carried out. The aim of the present study was to explore barriers to treatment adherence identified by young patients with cystic fibrosis and by their parents.
methodsA questionnaire survey of a cohort of young Danish patients with cystic fibrosis aged 14-25 years and their parents was undertaken.
resultsBarriers to treatment adherence were reported by 60% of the patients and by 62% of their parents. Patients and parents agreed that the three most common barriers encountered were lack of time, forgetfulness, and unwillingness to take medication in public. We found a significant positive correlation between reported number of barriers and perceived treatment burden. We also found a statistically significant relationship between the reported number of barriers and treatment adherence. A significant association was found between the number of barriers and the reactions of adolescents/young adults and those of their mothers and fathers, and between the number of barriers and the way the family communicated about cystic fibrosis.
conclusionThe present study showed that the majority of adolescents with cystic fibrosis and their parents experienced barriers to treatment adherence. Agreement between adolescents and their parents regarding the level and types of barriers indicates an opportunity for close cooperation between adolescents, their parents, and health care professionals in overcoming adolescent adherence problems.
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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.