Background This study examined the relationship of medication adherence to frequency of pulmonary exacerbation and rate of decline in FEV1% predicted (FEV1). Methods 95 CF patients ages 6 years or older and prescribed a pulmonary medication, enrolled in a longitudinal retrospective review of medication adherence and health outcomes (the occurrence and frequency of intravenous (IV) antibiotic treatments and FEV1) 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 FEV1, and regimen complexity. Composite MPR predicted baseline FEV1 (estimate=29.81, p=.007), but not decline in FEV1. 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.

BackgroundThere is a need for improving cohort retention in longitudinal studies. Our objective was to identify cohort retention strategies and implementation approaches used in studies with high retention rates.MethodsLongitudinal studies with ≥200 participants, ≥80% retention rates over ≥1 year of follow-up were queried from an Institutional Review Board database at a large research-intensive U.S. university; additional studies were identified through networking. Nineteen (86%) of 22 eligible studies agreed to participate. Through in-depth semi-structured interviews, participants provided retention strategies based on themes identified from previous literature reviews. Synthesis of data was completed by a multidisciplinary team.ResultsThe most commonly used retention strategies were: study reminders, study visit characteristics, emphasizing study benefits, and contact/scheduling strategies. The research teams were well-functioning, organized, and persistent. Additionally, teams tailored their strategies to their participants, often adapting and innovating their approaches.ConclusionsThese studies included specialized and persistent teams and utilized tailored strategies specific to their cohort and individual participants. Studies’ written protocols and published manuscripts often did not reflect the varied strategies employed and adapted through the duration of study. Appropriate retention strategy use requires cultural sensitivity and more research is needed to identify how strategy use varies globally.

BackgroundmHealth apps hold potential to provide automated, tailored support for treatment adherence among individuals with chronic medical conditions. Yet relatively little empirical research has guided app development and end users are infrequently involved in designing the app features or functions that would best suit their needs. Self-management apps may be particularly useful for people with chronic conditions like cystic fibrosis (CF) that have complex, demanding regimens.ObjectiveThe aim of this mixed-methods study was to involve individuals with CF in guiding the development of engaging, effective, user-friendly adherence promotion apps that meet their preferences and self-management needs.MethodsAdults with CF (n=16, aged 21-48 years, 50% male) provided quantitative data via a secure Web survey and qualitative data via semi-structured telephone interviews regarding previous experiences using apps in general and for health, and preferred and unwanted features of potential future apps to support CF self-management.ResultsParticipants were smartphone users who reported sending or receiving text messages (93%, 14/15) or emails (80%, 12/15) on their smartphone or device every day, and 87% (13/15) said it would be somewhat or very hard to give up their smartphone. Approximately one-half (53%, 8/15) reported having health apps, all diet/weight-related, yet many reported that existing nutrition apps were not well-suited for CF management. Participants wanted apps to support CF self-management with characteristics such as having multiple rather than single functions (eg, simple alarms), being specific to CF, and minimizing user burden. Common themes for desired CF app features were having information at one’s fingertips, automation of disease management activities such as pharmacy refills, integration with smartphones’ technological capabilities, enhancing communication with health care team, and facilitating socialization within the CF community. Opinions were mixed regarding gamification and earning rewards or prizes. Participants emphasized the need for customization options to meet individual preferences and disease management goals.ConclusionsUnique capabilities of emerging smartphone technologies (eg, social networking integration, movement and location detection, integrated sensors, or electronic monitors) make many of these requests possible. Involving end users in all stages of mHealth app development and collaborating with technology experts and the health care system may result in apps that maintain engagement, improve integration and automation, and ultimately impact self-management and health outcomes.

Objectives-To determine GI permeability and fecal calprotectin concentration in children 7-10 years of age with functional abdominal pain and irritable bowel syndrome (FAP/IBS) vs Controls and ascertain potential relationships with pain symptoms and stooling.Study design-GI permeability and fecal calprotectin concentration were measured. Children kept a two-week diary of pain episodes and stooling pattern.Results-Proximal GI permeability was greater in the FAP/IBS group (n = 93) compared with controls (n = 52) (0.59 ± 0.50 vs. 0.36 ± 0.26, respectively; mean ± SD; P < 0.001) as was colonic permeability (1.01 ± 0.67 vs. 0.81 ± 0.43, respectively; P < 0.05). Gastric and small intestinal permeability were similar. Fecal calprotectin concentration was greater in children with FAP/IBS compared with control children (65.5 ± 75.4 µg/g stool vs. 43.2 ± 39.4, respectively; P < 0.01). Fecal calprotectin concentration correlated with pain interference with activities (P = 0.01, r 2 = 0.36). There was no correlation between GI permeability and pain related symptoms. Neither permeability nor fecal calprotectin correlated with stool form.Conclusions-Children with FAP/IBS have evidence of increased GI permeability and low grade GI inflammation with the latter relating to the degree to which pain interferes with activities.Surveys suggest that 10% -17% of children between the ages of 4 and 16 years meet the criteria for recurrent abdominal pain (1-3). It has been suggested that the term recurrent abdominal pain be replaced by the terms functional abdominal pain (FAP) and irritable bowel syndrome (IBS) (4;5). FAP/IBS in children bear many similarities to IBS in adults and may be precursors for IBS (6-8). Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final citable form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. GI permeability is increased in adults with IBS (9;10); however, the limited data in children are unclear. Similarly, a few studies report GI inflammation (i.e., increased fecal calprotectin concentration) in adults with IBS (9). Little data are available regarding calprotectin in children (11;12). To our knowledge no pediatric studies have sought to determine if changes in GI permeability and/or fecal calprotectin concentration relate to FAP/IBS symptoms (e.g., pain severity or frequency, stooling pattern). NIH Public AccessThe objectives of this study were to measure permeability throughout the GI tract (using sugar permeability tests) and gut inflammation (using fecal calprotectin) in a large group of well characterized children with FAP/IBS and to compare the results to healthy children without GI complaints. We used a site-speci...

Background Adherence to CF treatments is poor, which can lead to negative health outcomes. The objective of our study was to qualitatively investigate the barriers and facilitators of self management among older adolescents and adults with CF. Methods Individual semi-structured interviews were conducted, audio-taped, transcribed verbatim and coded to identify common themes. Results Twenty-five patients were interviewed. Four broad themes were identified: Barriers to Self-Management (e.g., treatment burden (identified by 64% of patients), accidental or purposeful forgetting (60%), no perceived benefit (56%)), Facilitators of Self-Management (e.g., CF clinic visits (76%), social support (68%), perceived benefit (68%)), Substitution of Alternative Approaches to Conventional Management (36%) and Planned Nonadherence (32%). Conclusions Older adolescents and adults with CF identified many barriers and facilitators of adherence that may be amenable to self-management counseling strategies, particularly the use of health feedback.