Tailored medication adherence incentives for high-risk children with asthma: a pilot study.

Objective: While reminder-based electronic monitoring systems have shown promise in enhancing inhaled corticosteroid (ICS) adherence in select populations, more engaging strategies may be needed in families of children with high-risk asthma. This study assesses the acceptability and feasibility of gain-framed ICS adherence incentives in families of urban, minority children with frequent asthma hospitalization.Methods: We enrolled children aged 5-11 years with multiple yearly asthma hospitalizations in a 2-month, mixed methods, ICS adherence incentive pilot study. All participants received inhaler sensors and a smartphone app to track ICS use. During month 1, families received daily adherence reminders and weekly feedback, and children earned up to $1/day for complete adherence. No reminders, feedback, or incentives were provided in month 2. We assessed feasibility and acceptability using caregiver surveys and semi-structured interviews and ICS adherence using electronic monitoring data.Results: Of the 29 families approached, 20 enrolled (69%). Participants were primarily Black (95%), publicly insured (75%), and averaged 2.9 asthma hospitalizations in the prior year. Fifteen of the 16 caregivers (94%) surveyed at month 2 liked the idea of receiving adherence incentives. Mean adherence was significantly higher in month 1 compared with month 2 (80% vs. 33%, mean difference = 47%; 95% CI [33, 61], p < 0.001). Caregivers reported that their competing priorities often limited adherence, while incentives helped motivate child adherence.Conclusions: ICS adherence incentives were acceptable and feasible in a high-risk cohort of children with asthma. Future studies should assess the efficacy of adherence incentives in enhancing ICS adherence in high-risk children.

Controller adherence following hospital discharge in high risk children: A pilot randomized trial of text message reminders.

OBJECTIVE: To assess the feasibility of a mobile health, inhaled corticosteroid (ICS) adherence reminder intervention and to characterize adherence trajectories immediately following severe asthma exacerbation in high-risk urban children with persistent asthma. METHODS: Children aged 2-13 with persistent asthma were enrolled in this pilot randomized controlled trial during an asthma emergency department (ED) visit or hospitalization. Intervention arm participants received daily text message reminders for 30 days, and both arms received electronic sensors to measure ICS use. Primary outcomes were feasibility of sensor use and text message acceptability. Secondary outcomes included adherence to prescribed ICS regimen and 30-day adherence trajectories. Group-based trajectory modeling was used to examine adherence trajectories. RESULTS: Forty-one participants (mean age 5.9) were randomized to intervention (n = 21) or control (n = 20). Overall, 85% were Black, 88% had public insurance, and 51% of the caregivers had a high school education or less. Thirty-two participant families (78%) transmitted medication adherence data; of caregivers who completed the acceptability survey, 25 (96%) chose to receive daily reminders beyond that study interval. Secondary outcome analyses demonstrated similar average daily adherence between groups (intervention = 36%; control = 32%, P = 0.73). Three adherence trajectories were identified with none ever exceeding 80% adherence. CONCLUSIONS: Within a high-risk pediatric cohort, electronic monitoring of ICS use and adherence reminders delivered via text message were feasible for most participants, but there was no signal of effect. Adherence trajectories following severe exacerbation were suboptimal, demonstrating an important opportunity for asthma care improvement.

Design and Conduct of an Internet-Based Preconception Cohort Study in North America: Pregnancy Study Online.

BACKGROUND: We launched the Boston University Pregnancy Study Online (PRESTO) to assess the feasibility of carrying out an Internet-based preconception cohort study in the US and Canada. METHODS: We recruited female participants age 21-45 and their male partners through Internet advertisements, word of mouth, and flyers. Female participants were randomised with 50% probability to receive a subscription to FertilityFriend.com (FF), a web-based programme that collects real-time data on menstrual characteristics. We compared recruitment methods within PRESTO, assessed the cost-efficiency of PRESTO relative to its Danish counterpart (Snart-Gravid), and validated retrospectively reported date of last menstrual period (LMP) against the FF data. RESULTS: After 99 weeks of recruitment (2013-15), 2421 women enrolled; 1384 (57%) invited their male partners to participate, of whom 693 (50%) enrolled. Baseline characteristics were balanced across randomisation groups. Cohort retention was similar among those randomised vs. not randomised to FF (84% vs. 81%). At study enrollment, 56%, 22%, and 22% couples had been trying to conceive for < 3, 3-5, and ≥ 6 months, respectively. The cost per subject enrolled was $146 (2013 US$), which was similar to our companion Danish study and half that of a traditional cohort study. Among FF users who conceived, > 97% reported their LMP on the PRESTO questionnaire within 1 day of the LMP recorded via FF. CONCLUSIONS: Use of the Internet as a method of recruitment and follow-up in a North American preconception cohort study was feasible and cost-effective.

Attitudes Toward Fertility Preservation Among Transgender Youth and Their Parents.

PURPOSE: While gender-affirming hormones (GAH) may impact the fertility of transgender and gender diverse (TGGD) youth, few pursue fertility preservation (FP). The objective of this study is to understand youth and parent attitudes toward FP decision-making. METHODS: This study is a cross-sectional survey of youth and parents in a pediatric, hospital-based gender clinic from April to December 2017. Surveys were administered electronically, containing 34 items for youth and 31 items for parents regarding desire for biological children, willingness to delay GAH for FP, and factors influencing FP decisions. RESULTS: The mean age of youth (n = 64) was 16.8 years, and 64% assigned female at birth; 46 parents participated. Few youth (20%) and parents (13%) found it important to have biological children or grandchildren, and 3% of youth and 33% of parents would be willing to delay GAH for FP. The most common factor influencing youth FP decision-making was discomfort with a body part they do not identify with (69%), and for the parents, whether it was important to their child (61%). In paired analyses, youth and their parents answered similarly regarding youth desire for biological children and willingness to delay GAH for FP. CONCLUSIONS: The majority of TGGD youth and parents did not find having biological offspring important and were not willing to delay GAH for FP. Discomfort with reproductive anatomy was a major influencing factor for youth FP decision-making and their child's wishes was a major factor for parents. Future qualitative research is needed to understand TGGD youth and parent attitudes toward FP and to develop shared decision-making tools.

Health Insurance Coverage of Recommended Gender-Affirming Health Care Services for Transgender Youth: Shopping Online for Coverage Information.

We assessed online health insurance plan indication of coverage and accessibility of information for recommended services for transgender youth (TY). Content analysis was performed for plans used at a pediatric Gender Clinic by reviewing information about coverage of puberty blockers, hormones, masculinizing chest surgery, and counseling. Transgender-specific exclusions and the time required for the research assistant to review each plan's online information were noted. No plan (0%; n=36) indicated coverage of all four categories of recommended services online. Forty-nine percent indicated ≥1 transgender-specific exclusion. The median time required for a research assistant to review online coverage information for each insurance plan was 50 min. Efforts are needed to ensure that online insurance information is accessible and updated in accordance with policy and coverage recommendations for TY.

Validation of the Use of Electronic Health Records for Classification of ADHD Status.

OBJECTIVE: To validate an electronic health record (EHR)-based algorithm to classify ADHD status of pediatric patients. METHOD: As part of an applied study, we identified all primary care patients of The Children's Hospital of Philadelphia [CHOP] health care network who were born 1987-1995 and residents of New Jersey. Patients were classified with ADHD if their EHR indicated an International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) diagnosis code of "314.x" at a clinical visit or on a list of known conditions. We manually reviewed EHRs for ADHD patients ( n = 2,030) and a random weighted sample of non-ADHD patients ( n = 807 of 13,579) to confirm the presence or absence of ADHD. RESULTS: Depending on assumptions for inconclusive cases, sensitivity ranged from 0.96 to 0.97 (95% confidence interval [CI] = [0.95, 0.97]), specificity from 0.98 to 0.99 [0.97, 0.99], and positive predictive value from 0.83 to 0.98 [0.81, 0.99]. CONCLUSION: EHR-based diagnostic codes can accurately classify ADHD status among pediatric patients and can be used by large-scale epidemiologic and clinical studies with high sensitivity and specificity.

Perceived Access to Outpatient Care and Hospital Reutilization Following Acute Respiratory Illnesses.

OBJECTIVE: Efforts to decrease hospital revisits often focus on improving access to outpatient follow-up. Our objective was to assess the relationship between perceived access to timely office-based care and subsequent 30-day revisits following hospital discharge for 4 common respiratory illnesses. METHODS: This was a prospective cohort study of children 2 weeks to 16years admitted to 5 US children's hospitals for asthma, bronchiolitis, croup, or pneumonia between July 2014 and June 2016. Hospital and emergency department (ED) (in the case of croup) admission surveys administered to caregivers included the Consumer Assessments of Healthcare Providers and Systems Timely Access to Care. Access composite scores (range 0-100, with greater scores indicating better access) were linked with 30-day ED revisits and inpatient readmissions from the Pediatric Health Information System. The relationship between access to timely care and repeat utilization was assessed using multivariable logistic regression adjusting for demographics, hospitalization, and home/outpatient factors. RESULTS: Of the 2438 children enrolled, 2179 (89%) reported an office visit in the previous 6 months. Average access composite score was 52.0 (standard deviation, 36.3). In adjusted analyses, greater access scores were associated with greater odds of 30-day ED revisits (odds ratio [OR] = 1.07; 95% confidence interval [CI], 1.02-1.13)-particularly for croup (OR = 1.17; 95% CI, 1.02-1.36)-but not inpatient readmissions (OR = 1.02; 95% CI, 0.96-1.09). CONCLUSIONS: Perceived access to timely office-based care was associated with significantly greater odds of subsequent ED revisit. Focusing solely on enhancing timely access to care following discharge for common respiratory illnesses may be insufficient to prevent repeat utilization.