Chris Feudtner’s research while affiliated with The Children's Hospital of Philadelphia and other places

Importance Differential adherence to efficacious preventive medications is one potentially modifiable driver of racial disparities in childhood asthma outcomes. Objective To determine the effect of a financial incentive-enhanced intervention on adherence to inhaled asthma preventive medication in a high-risk, predominantly racially minoritized cohort of children with asthma. Design, Setting, and Participants This was a randomized clinical trial conducted from September 2019 through June 2022 at a large mid–Atlantic pediatric health system in the US. Children were eligible if they were between 5 and 12 years old, prescribed a preventive inhaler for daily use, and had at least 2 asthma exacerbations requiring systemic steroids in the preceding year. Data were analyzed from December 2022 to December 2024. Intervention Inhaled medication use was monitored using electronic inhaler sensors over a 7-month period. Families who completed a 1-month run-in interval were randomized to 1 of 3 arms for a 3-month experiment interval: (1) daily text message medication reminders, weekly adherence feedback, and gain-framed, financial incentives of up to $1 per day (full intervention); (2) daily text message medication reminders and weekly adherence feedback (hybrid intervention); or (3) no reminders, feedback, or incentives (active control). Medication adherence monitoring then continued for a 3-month observation interval, where all arms reverted to active control conditions. Main Outcomes and Measures The primary outcome was adherence to inhaled maintenance medication during the experiment; secondary outcomes included adherence during the observation phase. The study was powered to detect a difference in average monthly adherence between the full intervention and active control condition. Results Of the 106 children randomized, 99 had at least 1 month of monitoring data (56 male [57%] and 43 female [43%]; mean [SD] age, 8.0 [2.3] years). Most participants (81 [82%]) identified as non-Hispanic Black and demographic and clinical characteristics were similar across study arms. During the experiment interval, participants receiving the full intervention had a 15–percentage point (95% CI, 2-29 percentage points) higher inhaled maintenance medication adherence compared with participants in the active control. There was no evidence of adherence differences in the observation interval. Conclusion and Relevance While a financial incentive-enhanced mobile health intervention led to higher inhaled preventive medication adherence as compared with the active control group, there was no evidence for enduring effect after the intervention components ceased, consistent with other studies that include financial incentives to encourage behavior change. Trial Registration ClinicalTrials.gov Identifier: NCT03907410

Introduction:Interprofessional teams in the pediatric cardiac ICU consolidate their management plans in pre-family meeting huddles, a process that affects the course of family meetings but often lacks optimal communication and teamwork. Methods:Cardiac ICU clinicians participated in an interprofessional intervention to improve how they prepared for and conducted family meetings. We conducted a pretest–posttest study with clinicians participating in huddles before family meetings. We assessed feasibility of clinician enrollment, assessed clinician perception of acceptability of the intervention via questionnaire and semi-structured interviews, and impact on team performance using a validated tool. Wilcoxon rank sum test assessed intervention impact on team performance at meeting level comparing pre- and post-intervention data. Results:Totally, 24 clinicians enrolled in the intervention (92% retention) with 100% completion of training. All participants recommend cardiac ICU Teams and Loved ones Communicating to others and 96% believe it improved their participation in family meetings. We exceeded an acceptable level of protocol fidelity (>75%). Team performance was significantly (p < 0.001) higher in post-intervention huddles (n = 30) than in pre-intervention (n = 28) in all domains. Median comparisons: Team structure [2 vs. 5], Leadership [3 vs. 5], Situation Monitoring [3 vs. 5], Mutual Support [ 3 vs. 5], and Communication [3 vs. 5]. Conclusion:Implementing an interprofessional team intervention to improve team performance in pre-family meeting huddles is feasible, acceptable, and improves team function. Future research should further assess impact on clinicians, patients, and families.

Purpose Current literature reports strong support among parents for genetic testing for ill neonates; yet, some parents decline this testing for unknown reasons. We aimed to document the proportion of parents who decline, describe their clinical and demographic characteristics, and categorize their rationales. Methods We reviewed medical records to collect and compare clinical and demographic information for patients whose parents consented to and declined recommended genetic testing. We also conducted brief interviews with parents who declined testing to discover their rationales. Results Fifty-one of 247 parents (21%) declined recommended genetic testing. The most common reason for declining, cited by 83% of parents interviewed, was that the testing felt irrelevant to the problems they saw as most important. The second most common reason, cited by 63%, was worrying that the testing might yield unwanted information. Compared with parents who consented, those who declined were more likely to be making the decision for a child with a prenatally diagnosed condition (P = .022) or congenital anomaly (P = .029) and to have private health insurance (P = .031). Conclusion Parents who decline genetic testing for ill neonates provide an alternate appraisal of benefits and harms which should be incorporated into informing future parents considering these tests.

Importance Since implementation of the International Statistical Classification of Diseases, Tenth Revision, Clinical Modification ( ICD-10-CM ) in the US, thousands of new or related codes have been added to represent clinical conditions. The widely used pediatric complex chronic condition (CCC) system required a major update from version 2 (V2) to version 3 (V3) to capture the range of clinical conditions represented in the ICD-10-CM . Objective To update the CCC V3 system, creating V3, with new, missing, or retired codes; to reconceptualize the system’s use of technology codes; and to compare CCC V3 with V2. Design, Setting, and Participants This repeated cross-sectional study examined US hospitalization data from the Pediatric Health Information System (PHIS) and the Medicaid Merative MarketScan Research Databases from January 1, 2009, to December 31, 2019, for all patients aged 0 to 18 years. Data were analyzed from March 1, 2023, to April 1, 2024. Exposures The CCCs were identified in both data sources using the CCC V2 and V3 systems. Main Outcomes and Measures The (1) percentage of pediatric hospitalizations associated with a CCC, (2) numbers of CCC body-system categories per patient, and (3) explanatory power for hospital length of stay and in-hospital mortality were compared over time for V3 vs V2. Results Among 7 186 019 hospitalizations within PHIS, 54.3% patients were male, the median age was 4 years (IQR, 1-11 years), and 51.2% were aged 0 to 4 years). The CCC V2 identified 2 878 476 (40.1%) patients as having any CCC compared with 2 753 412 (38.3%) identified by V3. In addition, V2 identified 100 065 (1.4%) patients with transplant status compared with 146 683 (2.0%) by V3, and V2 identified 914 835 (12.7%) as having technology codes compared with 805 585 (11.2%) by V3. The 2 systems were similar in accounting for the number of CCC body-system categories per patient and in explaining variation in hospital length of stay and in-hospital mortality. For both V2 and V3, 10.0% of the variance in hospital length of stay and 12.0% of the variance in in-hospital mortality was explained by the presence of a CCC. Similar patterns were observed when analyzing the 2 999 420 Medicaid Merative MarketScan Research Databases’ hospitalizations (52.3% of patients were male, the median age was 1 year [IQR, 0-12 years], and 62.0% were 0 to 4 years old), except that the percentages of identified CCCs were all lower: V2 identified 758 110 hospitalizations (25.3%) with any CCC compared with 718 100 (23.9%) identified by V3. Conclusions and Relevance These results suggest that, moving forward, V3 should be used to identify CCCs, and ongoing, frequent updates to V3, using a transparent, structured process, will enable V3 to accurately reflect the evolving spectrum of clinical conditions represented in the ICD-10-CM .

Background The prevalence and characteristics of household material hardship (HMH) in families of children with advanced cancer and its association with parent distress are unknown and herein described. Methods Parents of children aged ≥2 years with advanced cancer at five cancer centers completed baseline surveys as part of the PediQUEST Response trial. HMH (housing, energy, and food) was operationalized as binary (≥1 HMH domains), ordinal (zero, one, or two or more HMH domains), and housing based (none, nonhousing [food and/or energy], only housing, or housing + other). Associations between HMH and parent distress measured by the State‐Trait Anxiety Inventory–State and the 10‐item Center for Epidemiologic Studies Depression Scale were estimated via linear models adjusting for confounders. Results Among 150 parents, 41% reported ≥1 HMH (housing, 28% [only housing, 8%; housing + other, 20%]; energy, 19%; food, 27%). HMH was more prevalent among Hispanic, other non‐White race, Spanish‐speaking, and single parents and those with lower education (associate degree or less) or who were uninsured/Medicaid‐only insured. Parents endorsing HMH reported higher anxiety (mean difference [MD], 9.2 [95% CI, 3.7–14.7]) and depression (MD, 4.1 [95% CI, 1.7–6.5]) scores compared to those without HMH. Distress increased with the number of hardships, particularly housing insecurity. Specifically, parents experiencing housing hardship, alone or combined, reported higher distress (housing only: anxiety: MD, 10.2 [95% CI, 1.8–18.5]; depression: MD, 4.9 [95% CI, 1.3–8.6]; housing + other HMH: anxiety: MD, 12.0 [95% CI, 5.2–18.9]; depression: MD, 4.8 [95% CI, 1.8–7.8]). Conclusions HMH is highly prevalent in pediatric advanced cancer, especially among historically marginalized families. Future research should investigate whether interventions targeting HMH, particularly housing stabilization efforts, can mitigate parent distress. Plain Language Summary In our cohort of parents of children with advanced cancer, household material hardship (HMH) was highly prevalent and significantly associated with higher parent distress. Housing hardship was the primary driver of this association. Families of children with advanced cancer may benefit from systematic HMH screening as well as targeted HMH interventions, especially stabilizing housing.