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Cystic fibrosis (CF) is a progressive, genetic disease affecting multiple organ systems. Treatments are complex and take 2–4 h per day. Adherence is 50% or less for pulmonary medications, airway clearance, and enzymes. Prior research has identified demographic and psychological variables associated with better adherence; however, no study has extensively identified facilitators of treatment adherence (e.g., adaptive behaviors and cognitions) in a sample of parents and adolescents. Forty-three participants were recruited from four CF centers as part of a larger measurement study. Participants included 29 parents (72% mothers; 72% Caucasian) and 14 adolescents (ages 11–20, 64% female, 71% Caucasian). Participants completed semi-structured interviews to elicit barriers to adherence. However, facilitators of adherence naturally emerged, therefore indicating need for further exploration. Interviews were audiotaped, transcribed and content-analyzed in NVivo to identify those behaviors and beliefs that facilitated adherence, using a phenomenological analysis. Frequencies of these themes were tabulated. Nine themes emerged, with individual codes subsumed under each. Themes included social support, community support, organizational strategies, “intrinsic characteristics,” combining treatments with pleasurable activity, flexibility, easier or faster treatment, prioritizing treatments, and negative effects of non-adherence. Results demonstrated the importance of identifying strategies that positively affect adherence. Interventions that are strength-focused, build on prior success, and utilize positive models generated by those who have successfully integrated CF treatments into their lives are more likely to be efficacious.

Purpose: ASCO recommends early involvement of palliative care for patients with advanced cancers on the basis of evidence from 18 randomized trials. We examined racial and ethnic minority representation in these trials and the role of race and ethnicity in the statistical analyses. The goal was to identify specific gaps in the palliative care evidence base for these individuals and potential strategies to address them. Methods: We reviewed the 18 trials cited in the 2012 and 2017 ASCO clinical statements on integrating palliative care into oncology. We extracted data on the reporting and categorization of race and ethnicity, on the enrollment of specific racial and ethnic minority groups, and on how race and ethnicity were addressed in the analyses. Results: One third of patient trials reported representation of specific racial and ethnic minority groups, one third reported rates of “white” versus “other,” and one third did not report race or ethnicity data. Among the patient trials with race and ethnicity data, 9.9% of participants were Asian, 8.8% Hispanic/Latino, and 5.7% African American. Analyses that used race and ethnicity were primarily baseline comparisons among randomized groups. Conclusion: Race and ethnicity were inconsistently reported in the trials. Among those that provided race and ethnicity data, representation of specific racial and ethnic minority groups was low. In addition to more research in centers with large minority populations, consistent reporting of race and ethnicity and supplementary data collection from minority patients who participate in trials may be strategies for improvement.

Purpose of review Cystic fibrosis (CF) is the most common genetic, life-shortening illness among white populations. Management of the disease requires a complex, time-consuming treatment regimen. The purpose of this review is to highlight current research examining the psychological burden of CF, including psychological distress, social challenges, treatment burden, and adherence to daily treatments. Recent findings Individuals with CF and their parent caregivers report elevated symptoms of depression and anxiety. Recent international guidelines (Cystic Fibrosis Foundation and European Cystic Fibrosis Society) recommend annual screening of these symptoms using the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) scales. Symptoms of depression have been associated with decreased adherence, lower quality of life, and higher healthcare costs. Adherence to pulmonary medications has been found to be 50% or less and decreases with age. Poor adherence has been associated with higher healthcare costs, more frequent hospitalizations, and worse quality of life. Summary Individuals with CF face unique challenges that can lead to psychological burden. Screening for these symptoms and developing effective interventions to improve adherence are the key targets for the next 5 years of research.