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

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.

Children's Experiences of Cystic Fibrosis: A Systematic Review of Qualitative Studies

“…[59][60][61] Nonadherence to treatment remains a significant problem, particularly in the pediatric population. [62][63][64] Our study suggests that this may result from self-consciousness and striving to appear normal, engaging in risk-taking behaviors to gain a sense of control and independence, needing to "escape" the illness and exhaustion from the demands of treatment, and a sense of disempowerment. Motivating factors for treatment adherence included determination to maintain health in their hope for transplantation and the desire to take responsibility and demonstrate maturity.…”

A weekend/weekday comparison of adherence to daily treatment regimens in adults with cystic fibrosis

“…This may result in CF patients finding it more challenging to independently integrate their daily treatments within their weekday lifestyle alongside other life commitments. Bregnballe et al (2011) support this assertion, indicating that one of the main adherence barriers is a lack of time.…”

“…The increased life expectancy for people with CF is creating a welcome challenge for health care professionals in supporting adolescent patients as they become increasingly responsible for their own medical regimens (Bregnballe, Schiotz, Boisen, Pressler, & Thastum, 2011). The challenges for CF patients are manifold in independently maintaining their complex and time-consuming daily treatment regimens, involving medication (e.g.…”

“…Adherence was measured utilising the DPD methodology. It was hypothesised that reported adherence would be higher during the weekend in comparison to weekdays, due to it being expected that the time pressures are less for adults during the weekend (Bregnballe et al, 2011;McNamara et al, 2009;Latchford et al, 2009). …”

O adolescente com fibrose cística: Crescer na diferença

“…O não reconhecimento de limitações foi levado ao limite quando um dos participantes se encontrava acompanhado com uma garrafa de oxigénio nos referiu que não sentia qualquer impedimento no seu dia-a-dia. Os discursos associados a esta categoria são condizentes com comportamentos de adaptação à doença (Bregnballe, Schiotz, Boisen, Pressler, & Thastum, 2011).…”