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Accuracy of body size estimation may impact motivation to adhere to treatment recommendations and health-related quality of life (HRQOL) in youth with cystic fibrosis (CF), but this has not yet been investigated. Thus, the goal of the current study was to examine accuracy of body size estimation in youth with CF, and associations with HRQOL, lung functioning, and dietary intake. Fifty-four youth diagnosed with CF (M = 13.61 years) completed the Figure Rating Scale, the Cystic Fibrosis Questionnaire–Revised, and a 24-h diet recall interview. Cohen’s Weighted Kappa Coefficient evaluated agreement between body size estimation and BMI percentile. Binary logistic regression analyses examined associations between body size accuracy and HRQOL, lung functioning, and dietary intake. A less than adequate agreement was found between youth body size estimation and BMI percentile. Most participants overestimated body size (69.8%). Body Image HRQOL, but neither lung functioning nor dietary intake, was significantly associated with body size estimation accuracy. Working with patients to improve perceptions of body size may also improve HRQOL scores and allow for discussion about treatment goals related to body size.

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.

The purpose of the study was to develop and evaluate a psychometrically sound health belief measure, the Beliefs About Medication Scale (BAMS) that can be used with adolescent chronic illness populations whose prescribed treatment includes oral medication. One hundred and thirty-three adolescents (age 11–18 years) with asthma (n = 60), HIV (n = 31), or inflammatory bowel disease (n = 42) completed the BAMS and, along with their parent, a self-report medication interview. A confirmatory factor analysis supported the hypothesized subscales of Perceived Threat, Positive Outcome Expectancy, Negative Outcome Expectancy, and Intent to Adhere to treatment. The subscales evidenced good internal consistency and 3-week test-retest reliability. Univariate and multivariate analyses demonstrated that the health belief constructs accounted for 22% of the variance in medication adherence beyond demographic and illness characteristics. The study provides preliminary evidence of the reliability and validity of a theoretically based measure of health beliefs for adolescents. The BAMS may be a useful tool to evaluate the psychological barriers to adherence that place teenagers at risk for nonadherence.

The accurate measurement of medication adherence is challenging, particularly in pediatrics. Electronic monitoring has been proposed as a possible “gold standard” for medication adherence measurement. Electronic monitoring permits the evaluation of patterns of medication use and dose-response relationship and may be a useful part of adherence promotion interventions. The use of these devices, however, is not without costs and cautions including, expense, malfunctioning, and interference with existing adherence routines. This review examines the costs and benefits of using electronic monitoring of adherence as well as the reliability and validity of electronic monitoring in general and, where possible, for specific devices (i.e., MEMS, MDIlog, and Doser). Finally, we provide recommendations for quality control protocols to minimize many of the problems encountered when using such devices. Ultimately, the choice of adherence measurement strategy should be based on the goal of the study and the resources available.