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

Vibeke Bregnballe1, Peter Oluf Schiøtz1, Kirsten A Boisen2, Tacjana Pressler3, Mikael Thastum4 1Department of Paediatrics, Aarhus University Hospital, Aarhus, Denmark; 2Centre of Adolescent Medicine, University Hospital of Copenhagen, Rigshospitalet, Copenhagen, Denmark; 3Cystic Fibrosis Centre, University Hospital of Copenhagen, Rigshospitalet, Copenhagen, Denmark; 4Department of Psychology, University of Aarhus, Aarhus, Denmark Background: Treatment 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. Methods: A questionnaire survey of a cohort of young Danish patients with cystic fibrosis aged 14–25 years and their parents was undertaken. Results: Barriers 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. Conclusion: The 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. Keywords: cystic fibrosis, adolescents, parents, barriers, adherenc

Human Breast Milk Contamination with Phthalates and Alterations of Endogenous Reproductive Hormones in Infants Three Months of Age

Phthalates adversely affect the male reproductive system in animals. We investigated whether phthalate monoester contamination of human breast milk had any influence on the postnatal surge of reproductive hormones in newborn boys as a sign of testicular dysgenesis. DESIGN: We obtained biologic samples from a prospective Danish–Finnish cohort study on cryptorchidism from 1997 to 2001. We analyzed individual breast milk samples collected as additive aliquots 1–3 months postnatally (n = 130; 62 cryptorchid/68 healthy boys) for phthalate monoesters [mono-methyl phthalate (mMP), mono-ethyl phthalate (mEP), mono-n-butyl phthalate (mBP), mono-benzyl phthalate (mBzP), mono-2-ethylhexyl phthalate (mEHP), mono-isononyl phthalate (miNP)]. We analyzed serum samples (obtained in 74% of all boys) for gonadotropins, sex-hormone binding globulin (SHBG), testosterone, and inhibin B. RESULTS: All phthalate monoesters were found in breast milk with large variations [medians (minimum–maximum)]: mMP 0.10 (< 0.01–5.53 μg/L), mEP 0.95 (0.07–41.4 μg/L), mBP 9.6 (0.6–10,900 μg/L), mBzP 1.2 (0.2–26 μg/L), mEHP 11 (1.5–1,410 μg/L), miNP 95 (27–469 μg/L). Finnish breast milk had higher concentrations of mBP, mBzP, mEHP, and Danish breast milk had higher values for miNP (p = 0.0001–0.056). No association was found between phthalate monoester levels and cryptorchidism. However, mEP and mBP showed positive correlations with SHBG (r = 0.323, p = 0.002 and r = 0.272, p = 0.01, respectively); mMP, mEP, and mBP with LH:free testosterone ratio (r = 0.21–0.323, p = 0.002–0.044) and miNP with luteinizing hormone (r = 0.243, p = 0.019). mBP was negatively correlated with free testosterone (r = −0.22, p = 0.033). Other phthalate monoesters showed similar but nonsignificant tendencies. CONCLUSIONS: Our data on reproductive hormone profiles and phthalate exposures in newborn boys are in accordance with rodent data and suggest that human Leydig cell development and function may also be vulnerable to perinatal exposure to some phthalates. Our findings are also in line with other recent human data showing incomplete virilization in infant boys exposed to phthalates prenatally

KRONISK SYG – MEN FØRST OG FREMMEST UNG

Omkring 10 % af unge lider af kroniske sygdomme, og dette kan give særlige udfordringer. Disse udfordringer overses ofte, såvel i sundhedsvæsenet som i samfundet. Kronisk sygdom kan give en ekstra belastning i forhold til den psykologiske og sociale udvikling, alle unge gennemgår, og særligt tilknytningen til forældrene kan belastes af tidligt opstået sygdom. De fleste syge unge formår alligevel at udvikle sig normalt og kan opnå særlige erfaringer og ressourcer i forhold til andre unge. Til trods for de forskelligheder, der ses ved forskellige diagnoser, har kroniske syge unge dog flest fællestræk, og da de fleste sygdomme hver for sig er sjældne, vil et fællessyn på kronisk syge unge øge vores viden og erfaringer vedrørende denne gruppe patienter