Financial hardship among siblings of long-term survivors of childhood cancer: A Childhood Cancer Survivor Study report.

BACKGROUND: Siblings of children with cancer may experience adverse household economic consequences, but their financial outcomes in adulthood are unknown. METHODS: A total of 880 siblings (aged 18-64 years) of adult-aged childhood cancer survivors were surveyed to estimate the prevalence of financial hardship by three established domains (behavioral, material, and psychological). For individual financial hardship items matching the contemporaneous National Health Interview Survey or Behavioral Risk Factor Surveillance System, siblings were compared with the general population by calculating adjusted prevalence odds ratios (ORs) to sample-weighted responses. Multivariable logistic regression models examined associations between sibling characteristics and each hardship domain and between sibling hardship and survivors' cancer/treatment characteristics. RESULTS: Behavioral, material, and psychological hardship was reported by 24%, 35%, and 28%, respectively. Compared with national survey respondents, siblings were more likely to report worries about medical bills (OR, 1.14; 95% confidence interval [CI], 1.06-1.22), difficulty affording nutritious foods (OR, 1.79; 95% CI, 1.54-2.07), and forgoing needed medical care (OR, 1.38; 95% CI, 1.10-1.73), prescription medications (OR, 2.52; 95% CI, 1.99-3.20), and dental care (OR, 1.34; 95% CI, 1.15-1.57) because of cost. Sibling characteristics associated with reporting financial hardship in one or more domains included female sex, older age, chronic health conditions, lower income, not having health insurance, high out-of-pocket medical expenditures, and nonmedical/nonhome debt. No survivor cancer/treatment characteristics were associated with sibling financial hardship. CONCLUSIONS: Adult siblings of childhood cancer survivors were more likely to experience financial hardship compared with the general population. Childhood cancer may adversely affect entire households, with potentially lasting implications.

Identifying adaptations for a mindfulness program for Spanish-speaking mothers of children with chronic conditions or disabilities.

Mothers of children with chronic conditions or disabilities have benefited from mindfulness programs, yet culturally relevant mindfulness programs for Spanish-speaking mothers are lacking. We aimed to explore how this population experienced a peer-led mindfulness program to inform adaptations. Sixteen mothers attended a 6-week program and completed semi-structured interviews. Using a realist evaluation framework, we explored relationships between participants' context, the program's mechanisms and outcomes. Our thematic analysis found that four contextual factors-faith, self-concept as a woman and mother, trauma, and level of social support-influenced how participants experienced the mechanisms. Mechanisms included having positive experiences when trying practices, engaging in self-reflection, and sharing life experiences and learning in community. The mechanisms led to four outcomes: emotion regulation, savoring daily life experiences, empowerment to practice self-care and common humanity. Faith was an important enabling factor because participants had positive experiences when integrating their faith with program content. Future research should examine adaptations that invite participants to explore this synergy. Self-reflection should also be emphasized because it increased motivation to use practices and helped address barriers to engagement. Because the four contextual factors apply to many Spanish-speaking immigrants, these adaptations could enhance mindfulness programs for this population more broadly.

Disparities in Pediatric Specialty Referral Scheduling and Completion.

OBJECTIVE: To estimate differences in scheduled and completed specialty referrals by race, ethnicity, language for care, and insurance type. STUDY DESIGN: We studied a retrospective cohort of 38 334 specialty referrals to a large children's hospital between March 2019 and March 2021. We included referrals for patients with primary care clinics within 5 miles of the hospital. We examined whether the odds of and time to scheduled and completed referrals differed by patient sociodemographic characteristics. RESULTS: Of all referrals, 62% were scheduled and 54% were completed. Referral completion rates were lower for patients with Black race (45%), Native Hawaiian/Pacific Islander race (48%), Spanish language (49%), and public insurance (47%). Odds of scheduled and completed referral were lower for Asian (aOR scheduled: 0.94, [95% CI: 0.89, 0.99]; aOR completed: 0.92 [0.87, 0.97]), Black (aOR scheduled: 0.86 [0.79, 0.94]; aOR completed: 0.80 [0.73, 0.87]), and publicly insured patients (aOR scheduled: 0.71 [0.66, 0.75]; aOR completed: 0.70 [0.66, 0.75]). Time to scheduled and completed referral was longer for Black (adjusted hazard ratio [aHR] scheduled: 0.93 [0.88, 0.98]; aHR completed: 0.93 [0.87, 0.99]) and publicly insured patients (aHR scheduled: 0.85 [0.82, 0.88]; aHR completed: 0.84 [0.80, 0.87]) and families with a language other than English (aHR scheduled: 0.66 [0.62, 0.70]; aHR completed: 0.92 [0.86, 0.99]). CONCLUSIONS: Within a geographically homogenous pediatric population, the odds and time to scheduled and completed specialty referrals differed by sociodemographic characteristics, suggesting the effects of discrimination. To improve access equity, health care organizations need clear and consistent referral workflows and more comprehensive metrics for access.

A multi-site survey of providers on the management of heart failure with dilated cardiomyopathy in children.

We conducted a scientific survey of paediatric practitioners who manage heart failure with dilated cardiomyopathy in children. The survey covered management from diagnosis to treatment to monitoring, totalling 63 questions. There were 54 respondents from 40 institutions and 3 countries. There were diverse selections of management options by the respondents in general, but also unanimity in some management options. Variation in practice is likely due to the relative paucity of scientific data in this field and lack of strong evidence-based recommendations from guidelines, which presents an opportunity for future research and quality improvement efforts as the evidence base continues to grow.

Drivers of Variation in Diagnosis and Management of Eosinophilic Esophagitis: A Survey of Pediatric Gastroenterologists.

BACKGROUND: Widespread variation in the diagnosis and treatment of eosinophilic esophagitis (EoE) has previously been reported among adult gastroenterologists; however, variation in EoE practice in among pediatric populations is poorly characterized. The study objectives were to describe guideline adherence and understand reasons for variation in EoE practice among pediatric gastroenterologists following publication of the updated 2018 international EoE guidelines. METHODS: We developed and administered a 28-item survey to pediatric gastroenterologists via an email listserv using the PEDGI Bulletin Board from 03/2019 to 04/2019. The survey was developed using evidence-based review, expert validation, and cognitive interviews. Survey domains included respondent knowledge of and adherence to published guidelines, diagnostic and management approach and rationale, and participant demographics. Analysis included descriptive statistics and tests for association. RESULTS: A total of 288 pediatric gastroenterologists completed the survey, most of whom practiced in an academic center (73%). More than half (63%) reported knowledge of the 2018 updated guidelines; however, only 52% agreed with them and 50% reported adherence. Respondents who reported not agreeing with updated guidelines cited concerns regarding increasing number of endoscopies (72%), misdiagnosing eosinophilia from reflux (56%), and insufficient data (23%). The most common drivers of decision making with respect to therapy choice were patient/family preference, evidence/guidelines, and symptom burden. CONCLUSIONS: Many physicians are not adherent to current guidelines for reasons which include lack of knowledge of updated guidelines and concern regarding the strength of the supporting evidence. This study elucidates several areas to enhance education regarding these guidelines to promote widespread adherence.

Perspectives on team communication challenges in caring for children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) require the expertise of many care providers spanning different disciplines, institutions, and settings of care. This leads to duplicate health records, breakdowns in communication, and limited opportunities to provide comprehensive, collaborative care. The objectives of this study were to explore communication challenges and solutions/recommendations from multiple perspectives including (i) parents, (ii) HCPs - hospital and community providers, and (iii) teachers of CMC with a goal of informing patient care. METHODS: This qualitative study utilized an interpretive description methodology. In-depth semi-structured interviews were conducted with parents and care team members of CMC. The interview guides targeted questions surrounding communication, coordination, access to information and roles in the health system. Interviews were conducted until thematic saturation was reached. Interviews were audio-recorded, transcribed verbatim, and coded and analyzed using thematic analysis. RESULTS: Thirty-two individual interviews were conducted involving parents (n = 16) and care team members (n = 16). Interviews revealed 2 main themes and several associated subthemes (in parentheses): (1) Communication challenges in the care of CMC (organizational policy and technology systems barriers, inadequate access to health information, and lack of partnership in care) (2) Communication solutions (shared systems that can be accessed in real-time, universal access to health information, and partnered contribution to care). CONCLUSION: Parents, HCPs, and teachers face multiple barriers to communication and information accessibility in their efforts to care for CMC. Parents and care providers in this study suggested potential strategies to improve communication including facilitating communication in real-time, universal access to health information and meaningful partnerships.

Perspectives of Parents and Providers on Reasons for Mental Health Readmissions: A Content Analysis Study.

Pediatric hospitalizations for mental health conditions are rapidly increasing, with readmission rates for mental health conditions surpassing those for non-mental health conditions. The objective of this study was to identify reasons for pediatric mental health readmissions from the perspectives of parents and providers. We performed a retrospective content analysis of surveys administered to parents and providers of patients with a 14-day readmission to an inpatient pediatric psychiatry unit between 5/2017 and 8/2018. Open-ended survey items assessed parent and provider perceptions of readmission reasons. We used deductive coding to categorize survey responses into an a priori coding scheme based on prior research. We used inductive coding to identify and categorize responses that did not fit into the a priori coding scheme. All data were recoded using the revised schema and reliability of the coding process was assessed using kappa statistics and consensus building. We had completed survey responses from 89 (64%) of 138 readmission encounters (56 parent surveys; 61 provider surveys). The top three readmission reasons that we identified from parent responses were: discordant inpatient stay expectations with providers (41%), discharge hesitancy (34%), and treatment plan failure (13%). Among providers, the top readmission reasons that we identified were: access to outpatient care (30%), treatment adherence (13%), and a challenging home (11%) and social environment (11%). We identified inpatient stay expectations, discharge hesitancy, and suboptimal access to outpatient care as the most prominent reasons for mental health readmissions, which provide targets for future quality improvement efforts.

Audio-Recorded Discharge Instructions for Limited English Proficient Parents: A Pilot Study.

BACKGROUND: Parents with limited English proficiency (LEP) demonstrate lower comprehension of discharge instructions. A study was conducted to (1) determine the feasibility of providing a greeting card with language-specific, audio-recorded discharge instructions to LEP parents; (2) describe use of and satisfaction with the cards; and (3) evaluate card effect on instruction comfort with home care and comprehension. METHODS: LEP parents of children undergoing day surgery from April to September 2016 were eligible. Participants were randomized to usual discharge instructions, or usual instructions plus a three-minute card with language-specific audio instructions that could be replayed repeatedly. Parents were surveyed by telephone two to seven days postdischarge to assess card use and satisfaction, comfort with home care, and discharge instruction recall (medications, home care, follow-up, and return precautions). Parent-reported instructions were compared to instructions in the medical record; concordance was determined by two blinded reviewers. Due to difficulty achieving recruitment goals, analysis focused on feasibility and acceptability. RESULTS: Of 83 parents enrolled, 66 (79.5%) completed the follow-up survey. Most had not completed high school (61.0%) and spoke Spanish (89.2%). Parents reported high satisfaction with the card (4.5/5 for ease of use, helpfulness, and understandability). Ninety-four percent shared the card with others, and 45.2% reported listening > 5 times. Besides reviewing the care instructions generally, parents reported using the card to review medications and engage others in the child's care. CONCLUSION: Providing language-concordant, audio-recorded discharge instructions was feasible, and parents reported high satisfaction with and frequent use of the cards with multiple caregivers.

The Impact of an Adolescent Depressive Disorders Clinical Pathway on Healthcare Utilization.

Clinical pathways are known to improve the value of health care in medical and surgical settings but have been rarely studied in the psychiatric setting. This study examined the association between level of adherence to an adolescent depressive disorders inpatient clinical pathway and length of stay (LOS), cost, and readmissions. Patients in the high adherence category had significantly longer LOS and higher costs compared to the low adherence category. There was no difference in the odds of 30-day emergency department return visits or readmissions. Understanding which care processes within the pathway are most cost-effective for improving patient-centered outcomes requires further investigation.

Herbal Use and Medical Pluralism Among Latinos in Southern California.

Complementary and alternative medicine (CAM) is often used alongside conventional medical care, yet few patients disclose CAM use to medical doctors. Our objectives were to (1) assess Latino herbal use, (2) explore the most commonly used herbs for common ailments, and (3) examine patients' disclosure of herb use to their physicians. Self-administered questionnaires were collected from 318 Latino patients seeking treatment at community health centers. Descriptive statistical analysis was conducted to determine the frequency of stated objectives among the participants. Fisher's exact test was used to compare differences among CAM users and non-users. Most respondents (90%) reported using herbs. Less than a third (31%) of those herb users felt comfortable speaking English to their physician. A majority (74.8%) of the respondents utilizing herbs reported never disclosing their herbal use to their healthcare providers, and of those that did, majority (63%) were under the age of 36 years. Of those that disclosed their herbal use, only 31% perceived receiving a positive reaction about herbal use from their providers. Chamomile, cinnamon, Aloe vera, spearmint, and key lime were the top used herbs in this population. Herbal use disclosure reflects a greater sense of trust and communication between patient and provider. Therefore, a need exists to increase provider competency for patients using herbs in order to improve consistency of care and facilitate healthy patients and communities, especially among Spanish-speaking Latinos in Southern California.

Peripartum and neonatal outcomes of small-for-gestational-age infants with gastroschisis.

OBJECTIVES: Neonates with gastroschisis are often small for gestational age (SGA) based on population nomograms. Our objective was to evaluate the effect of SGA on perinatal and neonatal outcomes in cases of gastroschisis. METHODS: This is a retrospective study of neonates with prenatally diagnosed gastroschisis from two academic centers between 2008 and 13. Perinatal and neonatal outcomes of neonates with SGA at birth were compared with appropriate-for-gestational-age (AGA) neonates. The primary composite outcome was defined as any of the following: neonatal sepsis, short bowel syndrome at discharge, prolonged mechanical ventilation (upper quartile for the cohort), bowel atresia or death. RESULTS: We identified 112 cases of gastroschisis, 25 of whom (22%) were SGA at birth. There were no differences in adverse peripartum outcomes between SGA and AGA infants. No difference was found in the primary composite neonatal outcome (52% vs 36%, p = 0.21), but SGA infants were more likely to have prolonged mechanical ventilation (44% vs 22%, p = 0.04) and prolonged length of stay (LOS) (52% vs 22%, p = 0.007). After adjusting for GA at delivery, SGA remained associated with prolonged LOS (OR = 4.3, CI: 1.6-11.8). CONCLUSION: Among infants with gastroschisis, SGA at birth is associated with a fourfold increase in odds for prolonged LOS, independent of GA.

A multicenter randomized trial to compare automatic versus as-needed follow-up for children hospitalized with common infections: The FAAN-C trial protocol.

INTRODUCTION: Physicians commonly recommend automatic primary care follow-up visits to children being discharged from the hospital. While automatic follow-up provides an opportunity to address postdischarge needs, the alternative is as-needed follow-up. With this strategy, families monitor their child's symptoms and decide if they need a follow-up visit in the days after discharge. In addition to being family centered, as-needed follow-up has the potential to reduce time and financial burdens on both families and the healthcare system. As-needed follow-up has been shown to be safe and effective for children hospitalized with bronchiolitis, but the extent to which hospitalized children with other common conditions might benefit from as-needed follow-up is unclear. METHODS: The Follow-up Automatically versus As-Needed Comparison (FAAN-C, or "fancy") trial is a multicenter randomized controlled trial. Children who are hospitalized for pneumonia, urinary tract infection, skin and soft tissue infection, or acute gastroenteritis are eligible to participate. Participants are randomized to an as-needed versus automatic posthospitalization follow-up recommendation. The sample size estimate is 2674 participants and the primary outcome is all-cause hospital readmission within 14 days of discharge. Secondary outcomes are medical interventions and child health-related quality of life. Analyses will be conducted in an intention-to-treat manner, testing noninferiority of as-needed follow-up compared with automatic follow-up. DISCUSSION: FAAN-C will elucidate the relative benefits of an as-needed versus automatic follow-up recommendation, informing one of the most common decisions faced by families of hospitalized children and their medical providers. Findings from FAAN-C will also have implications for national quality metrics and guidelines.

Population-Based Impact of Rurality and Neighborhood-Level Socioeconomic Disadvantage on Pediatric Cancer Mortality in Washington State.

BACKGROUND: Childhood cancer-related mortality differs by socioeconomic factors, but the impact of residential location, including rurality and neighborhood-level socioeconomic disadvantage, is not well-characterized. METHODS: This retrospective cohort study linked Washington State cancer registry data (1992-2013) to state birth (1974-2013) and death records (1992-2013) to identify residents <20 years diagnosed with cancer (n = 4,306). Census-based rural-urban commuting area codes and Area Deprivation Index (ADI) defined rural residence and neighborhood socioeconomic disadvantage at time of cancer diagnosis, respectively. Neighborhoods in the highest state ADI quintile were classified as the most disadvantaged. Kaplan-Meier estimates and Cox hazards models, adjusted for key characteristics, were used to compare mortality by rural and ADI classification. RESULTS: Five-year overall survival for children from non-rural low ADI neighborhoods (referent) was 80.9%±0.8%, versus 66.4%±2.9% from non-rural high ADI neighborhoods, 69.4%±3.8% from rural low ADI neighborhoods, and 66.9%±3.8% from rural high ADI neighborhoods (P < 0.01 for each comparison versus referent). Compared with the referent group, children from comparator neighborhoods had a greater mortality risk: Rural low ADI [hazard ratio (HR), 1.50; 95% confidence interval (CI), 1.12-2.02], rural high ADI (HR, 1.53; 95% CI, 1.16-2.01), and non-rural high ADI (HR, 1.64; 95% CI, 1.32-2.04). Associations of ADI and rurality with mortality varied in sub-analyses by cancer type. CONCLUSIONS: Children with cancer living in rural and/or socioeconomically disadvantaged neighborhoods at diagnosis experienced greater mortality relative to those without either factor. IMPACT: Future investigation is needed to examine how rurality and poverty potentially impact healthcare utilization and health-related outcomes in pediatric oncology.

Spanish Translation of a Parent-Reported Hospital-to-Home Transition Experience Measure.

OBJECTIVES: A critical focus of pediatric hospital systems is to improve the quality of hospital-to-home transitions. Although validated patient-reported measures evaluating these improvement efforts exist for English-speaking families, a comprehensive measure to assess transition quality among families who speak a language other than English does not yet exist. METHODS: We used a team consensus translation approach to translate and culturally adapt the previously validated Pediatric Transition Experience Measure (P-TEM), a caregiver-reported hospital-to-home transition quality measure, from English to Spanish. We describe our rigorous translation approach, which involved a series of steps to preserve the original meaning of the P-TEM through careful team-based linguistic and cultural adaptation of the measure into Spanish. During this process, we also found additional opportunities to improve the understandability and content validity of the original English version of P-TEM. We then pilot tested the new Spanish P-TEM with 36 parents and administered the revised English P-TEM with 125 caregivers (ie, parents/legal guardians). RESULTS: In pilot testing, none of the Spanish-speaking parents reported difficulty understanding questions, though 6% (2/36) expressed difficulty with understanding the response scale, prompting a change to present clearer scale anchors. Mean scores on the Spanish P-TEM were 95.4 (SD, 9.6) for the total score. Mean scores on the revised English P-TEM were 88.6 (SD, 15.6; total). CONCLUSIONS: Using a team consensus translation approach is a comprehensive and collaborative approach that allows for translation of measures originally developed for English-speaking families to be translated in a way that is reliable, accurate, and culturally appropriate.

Evaluation of a Secure Messaging System in the Care of Children With Medical Complexity: Mixed Methods Study.

BACKGROUND: The Connecting2gether (C2) platform is a web and mobile-based information-sharing tool that aims to improve care for children with medical complexity and their families. A key feature of C2 is secure messaging, which enables parental caregivers (PCs) to communicate with their child's care team members (CTMs) in a timely manner. OBJECTIVE: The objectives of this study were to (1) evaluate the use of a secure messaging system, (2) examine and compare the content of messages to email and phone calls, and (3) explore PCs' and CTMs' perceptions and experiences using secure messaging as a method of communication. METHODS: This is a substudy of a larger feasibility evaluation of the C2 platform. PCs of children with medical complexity were recruited from a tertiary-level complex care program to use the C2 platform for 6 months. PCs could invite CTMs involved in their child's care to register on the platform. Messages were extracted from C2, and phone and email data were extracted from electronic medical records. Quantitative data from the use of C2 were analyzed using descriptive statistics. Messaging content codes were iteratively developed through a review of the C2 messages and phone and email communication. Semistructured interviews were completed with PCs and CTMs. Communication and interview data were analyzed using thematic analysis. RESULTS: A total of 36 PCs and 66 CTMs registered on the C2 platform. A total of 1861 messages were sent on C2, with PCs and nurse practitioners sending a median of 30 and 74 messages, respectively. Of all the C2 messages, 85.45% (1257/1471) were responded to within 24 hours. Email and phone calls focused primarily on clinical concerns and medications, whereas C2 messaging focused more on parent education, proactive check-ins, and nonmedical aspects of the child's life. Four themes emerged from the platform user interviews related to C2 messaging: (1) connection to the care team, (2) efficient communication, (3) clinical uses of secure messaging, and (4) barriers to use. CONCLUSIONS: Overall, our study provides valuable insight into the benefits of secure messaging in the care of children with medical complexity. Secure messaging provided the opportunity for continued family teaching, proactive check-ins from health care providers, and casual conversations about family and child life, which contributed to PCs feeling an improved sense of connection with their child's health care team. Secure messaging can be a beneficial additional communication method to improve communication between PCs and their care team, reducing the associated burden of care coordination and ultimately enhancing the experience of care delivery. Future directions include the evaluation of secure messaging when integrated into electronic medical records, as this has the potential to work well with CTM workflow, reduce redundancy, and allow for new features of secure messaging.

Caregivers' Experiences With a Web- and Mobile-Based Platform for Children With Medical Complexity and the Role of a Live Platform Coach: Thematic Analysis.

BACKGROUND: Children with medical complexity (CMC) are individuals with complex chronic conditions who have substantial health care needs, functional limitations, and significant use of health care. By nature of their health status, they have many care providers across multiple settings, making information sharing critical to their health and safety. Connecting2gether (C2), a web- and mobile-based patient-facing platform, was codeveloped with families to support and empower parental caregivers, improve information sharing, and facilitate care delivery. C2 also provided a live platform coach to conduct parental feedback and coaching sessions, which included answering questions, providing advice on usage, and addressing technological issues. OBJECTIVE: This study was conducted to understand the experience of parental caregivers using the C2 platform and the role of the live platform coach. This study is a subset of a larger study assessing the feasibility of C2 in the care of CMC. METHODS: Parental caregivers (n=33) participated in biweekly sessions to provide feedback and receive real-time platform use support from a trained research team member acting as a live platform coach. Parental caregivers were asked about the utility and usability of C2's features. Questions, platform issues, and feedback were recorded on a standardized electronic data collection tool. A thematic analysis was performed to analyze parental comments, and codes were categorized into key themes. The number of comments corresponding with each code was quantified. RESULTS: A total of 166 parental feedback and coaching sessions were conducted, with an average of 5 sessions per parental caregiver (range 1-7). There were 33 (85%) parental caregivers that participated in at least one coaching session. Technical issues and difficulties navigating C2 were addressed in real time during the sessions to encourage platform engagement. Four key themes were identified: (1) live platform coach, (2) barriers to platform usage and technical challenges, (3) platform requests and modifications, and (4) parent partnership and empowerment. CONCLUSIONS: Parental caregivers describe C2 as a valuable tool, acting as a facilitator for enhanced care coordination and communication. Parental caregiver feedback showed that the live platform coach was a critical tool in educating on platform use and addressing technological concerns. Further study of the use of the C2 platform and its role in the care of CMC is needed to understand the possible benefits and cost-effectiveness of this technology.

Improving the Quality of Written Discharge Instructions: A Multisite Collaborative Project.

BACKGROUND AND OBJECTIVES: Written discharge instructions help to bridge hospital-to-home transitions for patients and families, though substantial variation in discharge instruction quality exists. We aimed to assess the association between participation in an Institute for Healthcare Improvement Virtual Breakthrough Series collaborative and the quality of pediatric written discharge instructions across 8 US hospitals. METHODS: We conducted a multicenter, interrupted time-series analysis of a medical records-based quality measure focused on written discharge instruction content (0-100 scale, higher scores reflect better quality). Data were from random samples of pediatric patients (N = 5739) discharged from participating hospitals between September 2015 and August 2016, and between December 2017 and January 2020. These periods consisted of 3 phases: 1. a 14-month precollaborative phase; 2. a 12-month quality improvement collaborative phase when hospitals implemented multiple rapid cycle tests of change and shared improvement strategies; and 3. a 12-month postcollaborative phase. Interrupted time-series models assessed the association between study phase and measure performance over time, stratified by baseline hospital performance, adjusting for seasonality and hospital fixed effects. RESULTS: Among hospitals with high baseline performance, measure scores increased during the quality improvement collaborative phase beyond the expected precollaborative trend (+0.7 points/month; 95% confidence interval, 0.4-1.0; P < .001). Among hospitals with low baseline performance, measure scores increased but at a lower rate than the expected precollaborative trend (-0.5 points/month; 95% confidence interval, -0.8 to -0.2; P < .01). CONCLUSIONS: Participation in this 8-hospital Institute for Healthcare Improvement Virtual Breakthrough Series collaborative was associated with improvement in the quality of written discharge instructions beyond precollaborative trends only for hospitals with high baseline performance.

Strategies to Improve the Quality of Team-Based Care for Neonatal Abstinence Syndrome.

BACKGROUND: Prioritizing nonpharmacologic care for neonatal abstinence syndrome (NAS) requires a team-based care (TBC) approach to facilitate staff and family engagement. We aimed to identify the important structures and processes of care for TBC of infants with NAS and quality of care outcomes that are meaningful to care team members (including parents). METHODS: Using a Donabedian framework, we conducted semistructured interviews from May to October 2019 with care team members at 3 community hospitals, including parents, nurses, social workers, physicians, lactation nurses, child protective services, volunteers, and hospital administrators. We used thematic analysis to identify important structures, processes of care, and outcomes. RESULTS: We interviewed 45 interprofessional care team members: 35 providers and 10 parents. Structures critical to providing TBC included (1) building a comprehensive network of interprofessional team members and (2) creating an NAS specialized unit. Necessary processes of care included (1) prioritizing early involvement of interprofessional team members, (2) emphasizing nonjudgmental incorporation of previous experience with addiction, (3) establishing clear roles and expectations, and (4) maintaining transparency with social services. Lastly, we identified 9 outcomes resulting from these identified structures and processes that are meaningful to care team members to assess the quality of care for infants with NAS. CONCLUSIONS: In this study, we identify important structures, processes of care, and meaningful outcomes to enhance and evaluate TBC for infants with NAS. Hospitals that adopt and implement these structures and processes have the potential to improve the quality of care for infants, caregivers, and providers who care for these infants.

Caregiver and provider experiences of physical, occupational, and speech therapy for children with medical complexity.

PURPOSE: Children with medical complexity (CMC) often use rehabilitative services ("therapy") to achieve optimal health outcomes. The study aims were to characterize caregiver and provider experiences with: 1) determining the suitability of therapy and 2) obtaining therapy for CMC. METHODS: Primary caregivers of CMC (n = 20) and providers (n = 14) were interviewed using semi-structured questions to elicit experiences of therapy. Interviews were recorded, transcribed and coded to identify caregiver and provider reported themes. Applied thematic analysis was used to characterize themes related to study objectives. RESULTS: Participants endorsed challenges setting therapy goals amongst competing patient and family priorities. They also identified logistical challenges to obtaining therapy, including transition from early intervention services to school-based years. Participants raised concerns about variability in obtaining school-based therapy and insurance coverage of community-based therapy. Overall, funding, salary, credentialing requirements, and training impacts the pediatric therapy workforce's ability to meet the need of CMC. CONCLUSION: Setting the ideal "dose" of therapy within the individual and family context can be challenging for CMC. Sufficient government programming, insurance coverage, and workforce availability were barriers to obtaining services. This study adds a more detailed understanding of therapy for CMC that can be used to inform future research and policy work.

An implementation model for managing cloud-based longitudinal care plans for children with medical complexity.

OBJECTIVE: We aimed to iteratively refine an implementation model for managing cloud-based longitudinal care plans (LCPs) for children with medical complexity (CMC). MATERIALS AND METHODS: We conducted iterative 1-on-1 design sessions with CMC caregivers (ie, parents/legal guardians) and providers between August 2017 and March 2019. During audio-recorded sessions, we asked participants to walk through role-specific scenarios of how they would create, review, and edit an LCP using a cloud-based prototype, which we concurrently developed. Between sessions, we reviewed audio recordings to identify strategies that would mitigate barriers that participants reported relating to 4 processes for managing LCPs: (1) taking ownership, (2) sharing, (3) reviewing, and (4) editing. Analysis informed iterative implementation model revisions. RESULTS: We conducted 30 design sessions, with 10 caregivers and 20 providers. Participants emphasized that cloud-based LCPs required a team of owners: the caregiver(s), a caregiver-designated clinician, and a care coordinator. Permission settings would need to include universal accessibility for emergency providers, team-level permission options, and some editing restrictions for caregivers. Notifications to review and edit the LCP should be sent to team members before and after clinic visits and after hospital encounters. Mitigating double documentation barriers would require alignment of data fields between the LCP and electronic health record to maximize interoperability. DISCUSSION: These findings provide a model for how we may leverage emerging Health Insurance Portability and Accountability Act-compliant cloud computing technologies to support families and providers in comanaging health information for CMC. CONCLUSIONS: Utilizing these management strategies when implementing cloud-based LCPs has the potential to improve team-based care across settings.