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Background In Cystic Fibrosis (CF), adherence to pulmonary medications is about 50% and decreases during adolescence. Effective interventions have not been integrated into CF care. This effectiveness study tested a brief, clinic-based behavioral intervention to improve adherence. Methods iCARE (I Change Adherence and Raise Expectations) was a pragmatic, clustered, 2-arm randomized controlled trial at 18 CF Centers. 607 adolescents with CF, ages 11–20 years, participated. Centers were randomized to IMPACT (n = 9; 300 adolescents), a brief problem-solving + education intervention, or standard care (SC; n = 9; 307 adolescents). IMPACT was delivered during a regularly scheduled clinic visit by a member of the clinical care team. The primary outcome was composite pulmonary medication possession ratio (cMPR); secondary endpoints were lung function, Body Mass Index percentile, courses of IV antibiotics, and health-related quality of life at 12 months. Results Effectiveness of the intervention was tested using mixed models, generalized estimating equations comparing IMPACT to SC. Fifty-eight percent of problem-solving sessions targeted barriers to airway clearance, exercise or nutrition, while 18% addressed pulmonary medications. Average intervention fidelity score was 67% (SD = 14%; Range = 25–100%). No significant intervention effects were found for cMPR or any of the secondary outcomes compared to SC. Conclusions The IMPACT intervention did not improve medication adherence or health outcomes over 12 months. Challenges to implementing the intervention as intended during busy clinic visits were identified. Trial Registry ClinicalTrials.gov; No.: NCT01232478; URL: www.clinicaltrials.gov.

Background This study aimed to quantify cystic fibrosis (CF) disclosure and examine associations between disclosure and psychosocial and health outcomes. Methods Participants completed measures assessing disease disclosure and psychosocial outcomes. Data from chart reviews and pharmacy records were obtained. Results Participants (N=128; ages 16–63) were more likely to disclose to romantic partners (97%) and close friends (94%) than to casual friends (79%), bosses (71%), or co-workers (53%). Participants reported more comfort discussing CF with and doing treatments in front of romantic partners and close friends than other groups. Disclosure was associated with higher social support, social functioning, and medication adherence self-efficacy. Lower lung-function was associated with disclosure to bosses and co-workers. Conclusions Clinicians should consider discussing disclosure with patients, as limited disclosure may have a negative impact on psychosocial outcomes.

Background This study examined the relationship of medication adherence to frequency of pulmonary exacerbation and rate of decline in FEV 1 % predicted (FEV 1 ). Methods 95 CF patients aged 6years or older and prescribed a pulmonary medication, were enrolled in a longitudinal retrospective review of medication adherence and health outcomes (the occurrence and frequency of intravenous (IV) antibiotic treatments and FEV 1 ) over 12-months. Pharmacy refill records were used to calculate a medication possession ratio (MPR). Results Composite MPR predicted the occurrence of at least one pulmonary exacerbation requiring a course of IV antibiotics (IRR=2.34, p=0.05), but not the frequency of exacerbations, after controlling for gender, baseline FEV 1, and regimen complexity. Composite MPR predicted baseline FEV 1 (estimate=29.81, p=.007), but not decline in FEV 1 . Conclusions These results demonstrate a significant relation between medication adherence and IV antibiotics in CF patients, highlighting the importance of addressing adherence during clinic visits to improve health outcomes.