Adolescent and caregiver perceptions of addressing mental health in inflammatory bowel disease.

Adolescents with inflammatory bowel disease (IBD) are at an increased risk of anxiety and depression compared to peers, but availability of mental health services in IBD clinics does not meet patients' needs, and use of primary care services for mental health screening and care is low. This study provides qualitative data regarding adolescent and caregiver perspectives on addressing mental health in IBD. Interviews were conducted with adolescents with IBD and caregivers of adolescents with IBD. Interview transcripts were coded and analyzed for prominent themes. Thirteen adolescents and fourteen caregivers were interviewed. Three primary themes emerged: mental health stigma makes discussing it more difficult, physician-adolescent trust makes conversations about mental health easier, and asking about mental health directly can help adolescents feel comfortable. Adolescents and caregivers highlighted the importance of considering each patient and their family individually when choosing how to discuss mental health. Fostering trust with adolescents with IBD is vital to addressing mental health. While encouraging standardized screening is important, the most patient-centered approach to mental health involves considering families individually to identify and address mental health challenges. Given the increased risk of anxiety and depression in pediatric patients with IBD, all providers encountering these patients should be equipped to discuss mental health non-judgmentally.

Pediatric Mental Health Care and Scope-of-Practice Expansions.

To examine the association between psychologist and nurse practitioner scope-of-practice (SoP) regulations and pediatric mental health service access. A nationally representative sample of children with mental health needs was identified using 5 years of National Survey of Children's Health (2016-2020). Utilization was measured in two ways: (1) unmet mental health care needs and (2) receipt of mental health medication. Expanded SoP for psychologists and nurse practitioners was measured based on the child's state of residence and the year of the survey. The associations between both SoP expansion and both outcomes were assessed using logistic regression models adjusted for multiple covariates. The probability of having unmet mental health needs was 5.4 percentage points lower (95% CI - 0.102, - 0.006) for children living in a state with psychologist SoP expansion; however, there was no significant difference in unmet mental health needs between states with and without NP SoP expansion. The probability of receiving a mental health medication was 2.0 percentage points higher (95% CI 0.007, 0.034) for children living in a state with psychologist SoP expansion. Conversely, the probability of receiving a mental health medication was 1.5 percentage points lower (95% CI - 0.023, - 0.007) for children living in a state with NP SoP expansion. Expanded SoP for psychologists is associated with improved access to pediatric mental health care in terms of both unmet need and receiving medication. Expanded SoP for NPs, however, was not associated with unmet need and lower receipt of medication.

Family Support Services and Reported Parent Coping Among Caregivers of Children with Emotional, Behavioral, or Developmental Disorders.

OBJECTIVE: Caregivers of children with special health care needs (CSHCN) experience substantial strain caring for their child's special needs because of high needs for health and other support services. Caregivers of CSHCN with emotional, behavioral, or developmental problems (EBDPs) report stress and poor mental health at higher rates than caregivers of other CSHCN. Although family support services are associated with caregiver mental health and well-being among families of CSHCN, the association of these factors with caregiver coping has been underexamined. METHOD: Using the Double ABCX Model of Family Adaptation to guide variable selection, this study uses 2016 to 2019 data from the National Survey of Children's Health. Univariate, bivariate, and multivariate logistic analyses examined the association between caregivers' receipt of adequate care coordination and emotional support services and their reported coping with the day-to-day strains of parenting. These relationships are compared between caregivers of CSHCN with and without EBDPs. RESULTS: Receipt of adequate care coordination was associated with higher rates of caregiver-reported positive coping for all caregivers of CSHCN who have no source of emotional support. Receipt of emotional support services was associated with increased reports of positive coping for caregivers for all CSHCN as well. Caregivers reporting only informal sources of emotional support, however, also reported higher rates of positive coping when compared with caregivers with no source of emotional support. CONCLUSION: Mobilization of resources that can aid caregivers in coordinating care and provide emotional support may play a key role in positive caregiver coping for families of CSHCN.

Patterns of Mental Health Service Use During the Transition to Adulthood Among Autistic Adolescents and Young Adults.

Background: The time of transition into adulthood, especially when leaving school, is a time when many autistic adolescents and young adults (AYA) may stop receiving mental health services that they have relied on, leading to worse mental health outcomes. The purpose of this study was to describe patterns of mental health service use during transition to adulthood among autistic AYAs. Methods: We performed a cross-sectional study using electronic health records from years 2015 to 2019 from one large university health care system. We included autistic individuals ages 11-27 with at least one clinical encounter annually in the cohort. Outcomes included psychotropic medications and psychotherapy received, psychotropic polypharmacy, psychiatric emergency department (ED) visits, and adverse drug events. Results: Almost half of the 529 patients in the cohort received polypharmacy. The most common treatment was medication only (56.9%), followed by no treatment (22.7%), medication plus psychotherapy (18.7%), and psychotherapy only (data masked). The 17-21 age group had the highest odds of a psychiatric ED visit, whereas the 22-27 age group had the highest odds of receiving psychotropic medications and polypharmacy. Black AYA were more likely to receive psychotherapy and less likely to receive psychotropic polypharmacy than non-Hispanic Whites. Conclusion: Autistic individuals may benefit from more support from the health care system for their transition into adulthood to maintain use of beneficial mental health services as they leave school and to reduce the frequency of adverse outcomes. Access to providers experienced treating the complex needs of autistic individuals is important to reduce disparities.

Why is this an important issue?: Autistic adolescents and young adults often do not receive the mental health care services they need. As they transition into adulthood, they may lose important mental health services they relied on during childhood. Losing services may negatively affect their health and produce bad outcomes such as emergency department visits. Previous studies have suggested that autistic individuals often stop receiving important services as they leave school and lose access to school-based services. What was the purpose of this study?: The purpose was to describe patterns of mental health service use during the transition to adulthood among autistic adolescents and young adults. Underutilized services might indicate areas where the health care system needs to improve. What did the researchers do?: We used data from electronic health records from a large university health system in the southeastern United States. We identified autistic adolescents and young adults ages 11­27 in the data. We analyzed whether they received medication and/or psychotherapy for their mental health, and whether they had emergency department visits and adverse drug events. We also examined polypharmacy, meaning the use of multiple medications of different classes for mental health. What were the results of the study?: Almost half of the 529 included patients experienced polypharmacy. The majority received medication only, whereas smaller percentages received medication plus psychotherapy or psychotherapy alone. Emergency department visits were most common in the 17­21 age group, and psychotropic medications and polypharmacy were most used in the 22­27 age group. Black individuals were more likely to receive psychotherapy and less likely to receive psychotropic polypharmacy than non-Hispanic Whites. What do these findings add to what was already known?: These findings show that providers are relying heavily on medication, often including polypharmacy, to treat mental health issues in autistic adolescents and young adults. What are potential weaknesses of the study?: The study used only one health care system in one state and may not reflect what happens in other states with different policies. Data may include a high number of patients with complex medical conditions, which may not reflect the typical patient's experience. Medications prescribed by providers outside this particular health system may not be captured. How will these findings help autistic adults now or in the future?: These findings reveal potential areas for improvement for providers and health systems in treating autistic adults. Ensuring that autistic adolescents can continue to receive important mental health services as they age into adulthood can improve their health.

Catalyzing Cross-Sector Collaboration: Lessons from a Virtual Pediatric Complex Care Coalition.

BACKGROUND: Children with complex health needs (CCHN) have intersecting medical, behavioral health, and social needs. Unfortunately, fragmentation across health and social services sectors often results in uncoordinated care for CCHN and their families. OBJECTIVE: The purpose of this article is to describe the creation of a statewide cross-sector partnership, the Children's Complex Care Coalition of North Carolina, to identify and act on opportunities for system-level improvements in the care of CCHN. METHODS: We applied a virtual community engagement approach to form an advisory committee of cross-sector collaborators; systematically identify priorities most important and urgent to collaborators for improving systems of care; and host a series of virtual convenings involving more than 90 attendees from across the state to operationalize collaborator-identified priorities into actionable next steps. LESSONS LEARNED: Key facilitators of success for the Children's Complex Care Coalition of North Carolina partnership were investing time in building trusting relationships, particularly with families of CCHN, and aligning goals and priorities with existing local and regional efforts. Challenges included incorporating traditionally under-represented perspectives, right-sizing virtual convening attendance and number of topics covered, and navigating technological difficulties in a virtual environment. CONCLUSIONS: Health systems can catalyze the formation of cross-sector coalitions and community partnerships to advance complex care. Virtual convenings with interactive activities and participatory structures can be an efficient medium to connect coalition members and elicit actionable recommendations for system-level improvements that address the needs of community members.

Emotional Support Among Parents of Children With Adverse Childhood Experiences.

INTRODUCTION: We assess the association between a child's exposure to adverse childhood experiences (ACEs) and the parent's current experiences of emotional support. METHOD: This study used pooled cross-sectional data from the National Survey of Children's Health (N = 129,988). Emotional support for the parent was classified by the presence (any emotional support, no emotional support) and type (any formal support or only informal support). All models were adjusted for relevant predisposing, enabling, and need factors. RESULTS: Having two or more ACEs was associated with a higher probability of any emotional support (average marginal effect = 0.017; 95% confidence interval = 0.002-0.032) and a higher probability of formal support (average marginal effect = 0.049; 95% confidence interval = 0.028-0.069). Several individual ACEs were associated with the presence and type of emotional support. DISCUSSION: Parents of children with higher ACEs are likelier to have emotional support, especially formal support.

Feasibility of implementing systematic social needs assessment for children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) have inter-related health and social needs; however, interventions to identify and respond to social needs have not been adapted for CMC. The objective of this study was to evaluate the feasibility of implementing social needs screening and assessment within pediatric complex care programs. METHODS: We implemented systematic social needs assessment for CMC (SSNAC) at two tertiary care centers in three phases: (1) pre-implementation, (2) implementation, and (3) implementation monitoring. We utilized a multifaceted implementation package consisting of discrete implementation strategies within each phase. In phase 1, we adapted questions from evidence-informed screening tools into a 21-item SSNAC questionnaire, and we used published frameworks to inform implementation readiness and process. In phases 2-3, clinical staff deployed the SSNAC questionnaire to parents of CMC in-person or by phone as part of usual care and adapted to local clinical workflows. Staff used shared decision-making with parents and addressed identified needs by providing information about available resources, offering direct assistance, and making referrals to community agencies. Implementation outcomes included fidelity, feasibility, acceptability, and appropriateness. RESULTS: Observations from clinical staff characterized fidelity to use of the SSNAC questionnaire, assessment template, and shared decision-making for follow-up on unmet social needs. Levels of agreement (5-point Likert scale; 1 = completely disagree; 5 = completely agree) rated by staff for key implementation outcomes were moderate to high for acceptability (mean = 4.7; range = 3-5), feasibility (mean = 4.2; range = 3-5), and appropriateness (mean = 4.6; range = 4-5). 49 SSNAC questionnaires were completed with a 91% response rate. Among participating parents, 37 (76%) reported ≥ 1 social need, including food/nutrition benefits (41%), housing (18%), and caregiver needs (29%). Staff responses included information provision (41%), direct assistance (30%), and agency referral (30%). CONCLUSIONS: It was feasible for tertiary care center-based pediatric complex care programs to implement a standardized social needs assessment for CMC to identify and address parent-reported unmet social needs.

Association of Care Coordination Experience and Health Services Use with Main Provider Type for Children with Inflammatory Bowel Disease.

OBJECTIVES: To describe care coordination experience for families of children with inflammatory bowel disease (IBD) and compare use of health services between families who identified a primary care physician (PCP) vs a gastroenterologist as a child's main provider. STUDY DESIGN: This is a cross-sectional survey of care coordination experiences and health services use for children 6-19 years old receiving care in the IBD program at a children's hospital during 2018. English-speaking parents completed the Family Experiences with Coordination of Care Survey about their child's main provider and reported past-year health services. Bivariate testing and multivariate logistic regression explored differences in care coordination experience and health services by main provider, adjusted for demographic and clinical variables. RESULTS: A total of 113 of 270 (42%) invited patients participated. Among 101 patients with complete data, 41% identified a PCP main provider. Performance on 5 of 16 Family Experiences with Coordination of Care indicators was higher for patients reporting a gastroenterologist vs a PCP main provider. However, having a PCP vs gastroenterologist main provider was associated with greater use of any past-year primary care services (adjusted proportion 94% vs 75%; P = .01) and of mental health services when needed (95% vs 60%; P < .01). Need for IBD-related hospitalization and emergency department visits did not differ between groups. CONCLUSIONS: Children with IBD may experience trade-offs in care coordination quality and important, non-disease-focused health services based on whom parents perceive as the main provider. Efforts to enhance cross-team coordination among families and primary and specialty care teams are needed to improve overall care quality.

A Quality Improvement Intervention Bundle to Reduce 30-Day Pediatric Readmissions.

INTRODUCTION: Pediatric hospital readmissions can represent gaps in care quality between discharge and follow-up, including social factors not typically addressed by hospitals. This study aimed to reduce the 30-day pediatric readmission rate on 2 general pediatric services through an intervention to enhance care spanning the hospital stay, discharge, and follow-up process. METHODS: A multidisciplinary team developed an intervention bundle based on a needs assessment and evidence-based models of transitional care. The intervention included pre-discharge planning with a transition coordinator, screening and intervention for adverse social determinants of health (SDH), medication reconciliation after discharge, communication with the primary care provider, access to a hospital-based transition clinic, and access to a 24-hour direct telephone line staffed by hospital attending pediatricians. These were implemented sequentially from October 2013 to February 2017. The primary outcome was the readmission rate within 30 days of index discharge. The length of stay was a balancing measure. RESULTS: During the intervention, the included services discharged 4,853 children. The pre-implementation readmission rate of 10.3% declined to 7.4% and remained stable during a 4-month post-intervention observation period. Among 1,394 families screened for adverse SDH, 48% reported and received assistance with ≥ 1 concern. The length of stay increased from 4.10 days in 2013 to 4.30 days in 2017. CONCLUSIONS: An intervention bundle, including SDH, was associated with a sustained reduction in readmission rates to 2 general pediatric services. Transitional care that addresses multiple domains of family need during a child's health crisis can help reduce pediatric readmissions.

A Multiple Case Study of Coordinated Care for Children with IBD through Caregiver Interviews.

INTRODUCTION: Effective care coordination is critical to manage unpredictable complications of conditions such as pediatric inflammatory bowel disease (IBD) that have a relapsing and remitting course. Our objective was to explore perspectives of care coordination following emergency department (ED) visits by children with IBD, because these may indicate deficient care coordination. METHODS: Using a multiple case study approach, we sought perspectives through semi-structured interviews of caregivers (parents, primary care providers, and gastroenterologists) for children with IBD who had a recent ED visit in either of two large pediatric referral centers in the southeastern US. We used criterion sampling to identify eligible participants through a medical record report of ED visits, and iterative sampling concurrent with analysis until no new themes were identified. Interviews were transcribed verbatim, and transcripts were coded using directed content analysis to identify emergent themes. RESULTS: From twenty-six interviews, three major themes emerged: perceptions of appropriate expertise, desire for integration of information and services, and making assumptions instead of engaging. Participants describe distinct roles for primary care and gastroenterology providers and recognize communication and information barriers to better coordination. Some parents and gastroenterologists perceive challenges to engaging primary care providers. Common recommendations include explicit guidance from gastroenterologists to primary care providers and methods for direct communication. DISCUSSION: Stakeholders describe common barriers and facilitators for effective care coordination, but some express beliefs about provider roles that could hinder improvement efforts. Tools to support asynchronous communication and shared planning may improve coordination and care quality for complications of IBD.

Outpatient Visits Before Ambulatory Care-Sensitive Hospitalization of Children Receiving Medicaid.

OBJECTIVES: Hospitalizations for ambulatory care-sensitive conditions (ACSC) are measured to indicate health care system quality, with the premise that fewer hospitalizations would occur with better preceding outpatient care. Our objectives were to identify outpatient care received in the 7 days preceding acute pediatric hospitalizations and to compare receipt of outpatient care by hospitalization type (ACSC vs non-ACSC). METHODS: This retrospective observational study used a 10-state database of Medicaid claims to identify outpatient visits within 7 days before acute unplanned hospitalization for children aged 0 to 17 years. We used logistic regression to assess the relationship between hospitalization type and occurrence of a preceding outpatient clinic visit, controlling for patient age, race/ethnicity, type of Medicaid, and complex chronic conditions. RESULTS: Of 254,902 hospitalizations, 28.6% had a preceding outpatient visit. Thirty-five percent of hospitalizations were for ACSC. A greater percentage of ACSC versus non-ACSC hospitalizations had a preceding outpatient visit (31.1% vs 27.3%, P < .001). In multivariable analysis, characteristics associated with a preceding outpatient visit were age <1 versus 13 to 17 years (adjusted odds ratio [aOR] 2.4; 95% confidence interval [CI] 2.3-2.5), ≥2 vs 0 complex chronic conditions (aOR 1.9; 95% CI 1.8-2.0), Medicaid managed care versus fee for service (aOR 1.2; 95% CI 1.2-1.3), and ACSC versus non-ACSC hospitalization (aOR 1.2; 95% CI 1.1-1.2). CONCLUSIONS: Although receipt of outpatient care was modestly higher in children hospitalized with an ACSC, most hospitalized children did not receive preceding outpatient care. Further investigation is needed to assess why such a large proportion of children do not receive outpatient care before acute unplanned hospitalization, especially for ACSC.

Pediatrician Maintenance of Certification Using American Board of Pediatrics' Performance Improvement Modules.

BACKGROUND: From 2010 to 2014, pediatricians completed Part 4 Maintenance of Certification (MOC) through practice- or organization-developed quality improvement (QI) activities approved by the American Board of Pediatrics (ABP). Organization-developed activities were online modules, such as the ABP's Performance Improvement Modules (PIMs), through which pediatricians implemented QI strategies in practice and reported quality measures. OBJECTIVES: Aim 1 was to assess the proportion of pediatricians who completed practice- vs organization-developed QI activities for Part 4 MOC and to test the relationship between activities and pediatrician demographics. Aim 2 was to assess the relationship between PIM completion and improvement in care processes and outcomes as determined by PIM quality measures. METHODS: For aim 1, using deidentified demographic data from the ABP, we summarized QI activity completion and performed bivariate testing by pediatrician demographics. For aim 2, using deidentified parent and pediatrician-reported quality measures from the Attention-Deficit/Hyperactivity Disorder (ADHD), Asthma, Hand Hygiene, and Influenza PIMs, we used 2-sample tests of proportions to calculate pre-post changes in quality measures. RESULTS: For aim 1, of 50,433 pediatricians who completed Part 4 MOC from 2010 to 2014, 22% completed practice-developed and 78% organization-developed activities. More pediatricians completed organization-developed activities, regardless of age, gender, or subspecialty status. The majority (73%) of pediatricians who completed organization-developed activities completed ABP PIMs. For aim 2, PIM completion was associated with improvement on nearly all pediatrician- and parent-reported quality measures. CONCLUSIONS: At the outset of the Part 4 MOC system, pediatricians most commonly completed online, organization-developed activities. Pediatricians and parents reported improvements in care processes and outcomes associated with PIMs, suggesting PIMs can be an effective means of facilitating practice improvement.

Perceptions of the medical home by parents of children with chronic illnesses.

OBJECTIVES: The patient-centered medical home (PCMH) strives to improve the quality of care in the primary care setting. Recently, certification programs for patient-centered coordinated care have expanded to subspecialty care. Children with chronic conditions are particularly in need of patient-centered and coordinated care. Our objective was to compare parent perceptions of PCMH elements at primary care and specialty practices for children receiving specialty care. STUDY DESIGN: Cross-sectional survey study. METHODS: We surveyed the parents of children returning for specialty care in a hospital-based pediatric subspecialty clinic on the presence of National Committee for Quality Assurance (NCQA) PCMH elements in their primary care practice and in their main specialty care practice. RESULTS: More parents perceived good appointment access at primary care practices than they did at specialty practices (93% vs 87%, respectively; P <.001). They perceived good care coordination and referral follow-up both at primary care and specialty practices (89% vs 88% and 92% vs 92%, respectively). However, parents less frequently perceived the presence of 7 other PCMH elements at primary care practices compared with specialty practices; these included appointment and tests due reminders, distributing handouts, electronic prescribing, sharing test results, surveying experiences, and e-mail capability. CONCLUSIONS: Despite an emphasis on PCMHs in primary care settings, parents of children seeking specialty care are more likely to perceive the presence of NCQA PCMH elements in specialty rather than primary care clinics. Future PCMH efforts should address parents' perceptions and interpretations of these services.

Enhanced Access and Parents' Preferred Contact for a Child's Chronic Condition.

OBJECTIVES: To assess whether the perception of enhanced access by parents in their child's primary care and main specialty practices is associated with preference for contacting either practice when problems arise with a child's chronic condition. STUDY DESIGN: In this cross-sectional survey study of parents whose children use both primary and specialty practices, we assessed perceptions of 3 components of enhanced access: (1) appointment availability when needed, (2) electronic communication with practices, and (3) other staff that help manage a child's health care needs. Parents also indicated which practice they would contact for an exacerbation of the main chronic condition for which the child receives specialty care. We used logistic regression to examine relationships of enhanced access components in both practices with parents' indicated practice. RESULTS: Among 609 parents, 244 (40%) would contact primary care and 365 (60%) the main specialty practice for a chronic condition exacerbation. Although parents perceived enhanced access components with similar frequency in both settings, enhanced access was associated only with preference for contacting the main specialty practice: e-mail communication (aOR for preferring the specialty practice 2.0 [1.3, 3.2]) and staff that coordinate a child's care needs (aOR 2.8 [1.4, 5.9]). CONCLUSIONS: Enhanced access is associated with preference for addressing chronic condition exacerbations in specialty but not primary care. Future study should further identify factors important to parents in deciding when and how to contact practices and should seek to develop family-centered communication within medical homes that integrate primary and specialty care.

Parent-Reported Health Consequences and Relationship to Expenditures in Children with ADHD.

OBJECTIVES: (1) To describe parents' report of special needs for children with ADHD on the Children with Special Health Care Needs (CSHCN) Screener; and (2) to assess the association between responses to Screener items and annual mental health and total health expenditures per child. METHODS: In pooled 2002-2011 Medical Expenditure Panel Survey (MEPS) data, we identify children ages 4-17 years with ADHD. We use OLS and two-part regressions to model the relationship between CSHCN Screener items and mental health and total health expenditures. Based on these models we estimate adjusted, average total health expenditures for children with ADHD-both with and without a co-morbid mental health condition-and different combinations of endorsed Screener items. This research was conducted in accordance with prevailing ethical principles. RESULTS: There were 3883 observations on 2591 children with ADHD. Without a co-morbid mental health condition, average total expenditures per year from adjusted, model-based estimates were $865 for those meeting no Screener items, $2664 for those meeting only the medication item, $3595 for those meeting the medication and counseling items, and $4203 for those meeting the medication, counseling, and use of more health services items. Children with a co-morbid mental health condition had greater total health expenditures for each combination of Screener items. The associations between Screener items and mental health expenditures were similar, but with a slightly lower marginal effect of the medication item (p < 0.001 for all comparisons). CONCLUSIONS: Parents' responses on the CSHCN Screener are associated with meaningful variation in expenditures for children with ADHD. Though cross-sectional, this study suggests that the CSHCN Screener can be a useful categorization scheme for children with ADHD. It may be an efficient, standardized tool at the point of care for identifying children who need more resources and for targeting intensive interventions in the context of population health management.

Identifying Social Determinants of Health and Legal Needs for Children With Special Health Care Needs.

Children with special health care needs (CSHCN) require comprehensive care with high levels of community and government assistance. Medical-legal partnerships may be particularly suited to address needs for this population. To explore this, we conducted in-depth telephone interviews of families of CSHCN cared for in the primary care practice of our tertiary care children's hospital. The majority of the sample (N = 46) had been late on housing payments and 17% of homeowners had been threatened with foreclosure. Families frequently reported denial of public benefits. Approximately 10% had executed advance planning documents such as guardianship plans for the children or wills for the parents. A minority of families had sought help from community agencies or lawyers. Less than one third had ever discussed any of the issues with health care providers, but two thirds were likely or very likely to in the future. CSHCN may especially benefit from the social support of a medical-legal partnership.