The impact of COVID-19 on disease epidemiology, family dynamics, and social justice in Minnesota: All that you cannot see.

Objective: The COVID-19 pandemic presented a challenge to established seed grant funding mechanisms aimed at fostering collaboration in child health research between investigators at the University of Minnesota (UMN) and Children's Hospitals and Clinics of Minnesota (Children's MN). We created a "rapid response," small grant program to catalyze collaborations in child health COVID-19 research. In this paper, we describe the projects funded by this mechanism and metrics of their success. Methods: Using seed funds from the UMN Clinical and Translational Science Institute, the UMN Medical School Department of Pediatrics, and the Children's Minnesota Research Institute, a rapid response request for applications (RFAs) was issued based on the stipulations that the proposal had to: 1) consist of a clear, synergistic partnership between co-PIs from the academic and community settings; and 2) that the proposal addressed an area of knowledge deficit relevant to child health engendered by the COVID-19 pandemic. Results: Grant applications submitted in response to this RFA segregated into three categories: family fragility and disruption exacerbated by COVID-19; knowledge gaps about COVID-19 disease in children; and optimizing pediatric care in the setting of COVID-19 pandemic restrictions. A series of virtual workshops presented research results to the pediatric community. Several manuscripts and extramural funding awards underscored the success of the program. Conclusions: A "rapid response" seed funding mechanism enabled nascent academic-community research partnerships during the COVID-19 pandemic. In the context of the rapidly evolving landscape of COVID-19, flexible seed grant programs can be useful in addressing unmet needs in pediatric health.

Non-invasive bladder function measures in healthy, asymptomatic female children and adolescents: A systematic review and meta-analysis.

BACKGROUND: Lower urinary tract symptoms (LUTS) are common in children and adolescents. Non-invasive tests evaluating bladder function are generally preferred over invasive tests, yet few studies have explored the range of normative values for these tests in healthy, asymptomatic children. OBJECTIVE: To define normative reference ranges for non-invasive tests of bladder function in healthy, asymptomatic girls and adolescents. STUDY DESIGN: A comprehensive search strategy was performed in seven electronic databases through October 2019. English-language studies reporting data on voiding frequency, voided and postvoid residual volumes (PVR) and uroflowmetry results in healthy, asymptomatic girls (mean age ≥ 5 years) were included. Two independent reviewers performed study review, data extraction, and quality assessment. Overall mean estimates and 95% confidence intervals for each bladder function parameter were calculated using random effects models, and 95% normative reference values were estimated. RESULTS: Ten studies met eligibility criteria for the meta-analysis (n = 2143 girls, age range: 3-18). Mean estimates of maximum voided volume and PVR were 233.4 ml (95% CI 204.3-262.6; n = 1 study) and 8.6 ml (95% CI 4.8-12.4; n = 2 studies) respectively. Pooled mean estimates for uroflowmetry parameters were: 21.5 ml/s (95% CI 20.5-2.5) for maximum flow rate (n = 6 studies), 12.5 ml/s (95% CI 11.2-13.8) for mean flow rate (n = 6 studies), 6.8 s (95% CI 4.4-9.3) for time to maximum flow (n = 3 studies), 15.7 s (95% CI 13.0-18.5) for flow time (n = 3 studies), and 198.7 ml (95% CI 154.2-234.2) for voided volume (n = 9 studies). No studies reported estimates of voiding frequency. Between-study heterogeneity was high (89.0-99.6%). CONCLUSIONS: Although we were able to calculate pooled mean estimates for several parameters, the small number of included studies and the wide age ranges of participants preclude generalization of reference values to all healthy girls. Further research is needed to determine normative reference values within specific age groups.

Anxiety and depressive symptoms in adolescents and young adults with epilepsy: The role of illness beliefs and social factors.

PURPOSE: This study examined (1) the prevalence of anxiety and depressive symptoms among adolescents and young adults (AYA) with epilepsy and (2) demographic and medical characteristics, illness beliefs, and social factors associated with anxiety and depressive symptoms to guide intervention development. METHODS: A community-based sample of AYA with epilepsy (n = 179, ages 13-24 years, 39% male) completed online questionnaires measuring anxiety symptoms (GAD-7), depressive symptoms (PHQ-9), illness beliefs (helplessness; acceptance; perceived benefits), and social factors (family functioning; social stigma; connectedness). Participants also reported medical information (epilepsy type; years since diagnosis; time since last seizure; current medications). RESULTS: Prevalence of clinically significant symptoms of anxiety and depression, 36% and 35%, respectively, was high compared to population prevalence. In multivariable regression models, demographic and medical factors explained only 2% of the variance in depressive symptoms and 6% in anxiety symptoms. Illness beliefs and social factors accounted for a majority of the explanatory power of both models (partial R2 = 0.37 for anxiety; 0.44 for depression). Specifically, acceptance, family functioning, and social stigma accounted for the greatest variance (p's < 0.01). CONCLUSIONS: This study found a high prevalence of anxiety and depressive symptoms among AYA with epilepsy. Epilepsy variables (seizure type, medications, and years since diagnosis) were not associated with these psychological symptoms. Rather, the majority of variance in symptoms was accounted for by potentially modifiable beliefs and social factors. Interventions that promote illness acceptance, enhance family functioning, and reduce social stigma may ameliorate psychological distress among AYA with epilepsy.

Depressive Symptoms in Older versus Younger People with Epilepsy: Findings from an Integrated Epilepsy Self-Management Clinical Research Dataset.

AIM: There are limited data on psychological outcomes in older people with epilepsy (PWE). This analysis, from a large pooled dataset of clinical studies from the Managing Epilepsy Well (MEW) Network, examined clinical variables including depressive symptom severity, quality of life and epilepsy self-management competency among older (age 55+) vs younger (

Self-management for adults with epilepsy: Aggregate Managing Epilepsy Well Network findings on depressive symptoms.

OBJECTIVE: To assess depressive symptom outcomes in a pooled sample of epilepsy self-management randomized controlled trials (RCTs) from the Managing Epilepsy Well (MEW) Network integrated research database (MEW DB). METHODS: Five prospective RCTs involving 453 adults with epilepsy compared self-management intervention (n = 232) versus treatment as usual or wait-list control outcomes (n = 221). Depression was assessed with the nine-item Patient Health Questionnaire. Other variables included age, gender, race, ethnicity, education, income, marital status, seizure frequency, and quality of life. Follow-up assessments were collapsed into a visit 2 and a visit 3; these were conducted postbaseline. RESULTS: Mean age was 43.5 years (SD = 12.6), nearly two-thirds were women, and nearly one-third were African American. Baseline sample characteristics were mostly similar in the self-management intervention group versus controls. At follow-up, the self-management group had a significantly greater reduction in depression compared to controls at visit 2 (P < .0001) and visit 3 (P = .0002). Quality of life also significantly improved in the self-management group at visit 2 (P = .001) and visit 3 (P = .005). SIGNIFICANCE: Aggregate MEW DB analysis of five RCTs found depressive symptom severity and quality of life significantly improved in individuals randomized to self-management intervention versus controls. Evidence-based epilepsy self-management programs should be made more broadly available in neurology practices.

Medical Risk and Resilience in Adolescents and Young Adults With Epilepsy: The Role of Self-Management Self-Efficacy.

OBJECTIVE: Medical factors that put adolescents and young adults (AYA) with epilepsy at risk for poor health-related quality of life (HRQOL) are well-established. Less known is whether medical risk is associated with decreases in global psychological well-being and how self-management self-efficacy might contribute to resilience. The current study seeks to (a) examine the relationship between medical risk and both HRQOL and psychological well-being in AYA with epilepsy and (b) investigate the potential moderating role of self-management self-efficacy. METHODS: A sample of 180 AYA with epilepsy, aged 13-24 years, was recruited from clinic and community settings and completed questionnaires. A medical risk gradient composed of seizure frequency, antiepileptic drugs, and other health problems was created. HRQOL, psychological well-being, and self-management self-efficacy were assessed. RESULTS: Medical risk was negatively associated with HRQOL, such that youth with greater risk scores reported lower HRQOL (r = -0.35, p < .01). However, there was no significant relationship between medical risk and psychological well-being (r = -0.08, p = .31). Self-efficacy was positively correlated with HRQOL and well-being (r = 0.50, p < .01; r = 0.48, p < .01). A moderation effect was detected, such that the positive effect of self-efficacy on HRQOL differed across medical risk levels. IMPLICATIONS: Cultivating psychological strengths, as opposed to solely addressing medical problems, may be a promising intervention target when treating AYA with epilepsy, including those navigating healthcare transitions. Self-efficacy predicted HRQOL at most levels of risk, suggesting an important modifiable intrinsic factor that may promote resilience.

Improving the Sexual Health of Young People With Mobility Impairments: Challenges and Recommendations.

INTRODUCTION: This mixed-method study (a) describes challenges to providing sexual health services to youth with mobility impairments from the perspective of health care providers and experts and (b) describes and compares sexual health-related experiences of youth with mobility impairments. METHOD: Secondary data analysis of My Path, a study focused on the transition to adulthood for youth with mobility impairments. Using an exploratory sequential design, qualitative data (n = 10) were analyzed using systematic content analysis followed by quantitative analysis of survey data (N = 337). RESULTS: Challenges included not talking about sex, managing sexual development, adaptation and instruction, parent roles, and safety. Survey data showed that youth with mobility impairments are diverse in their experiences with sexual behavior and sources of sexual health information. Although connected with primary care providers, few received information about sexual health. DISCUSSION: Interventions to improve youths' well-being should include comprehensive care and education that promotes and supports healthy sexual development.

Research Needs for Effective Transition in Lifelong Care of Congenital Genitourinary Conditions: A Workshop Sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases.

Over the last 5 decades, health-care advances have yielded quantum improvements in the life expectancy of individuals with congenital genitourinary conditions (CGCs), leading to a crisis of care. Many individuals with CGC enter adulthood unprepared to manage their condition. Pediatric CGC specialists lack training to manage adulthood-related health-care issues, whereas adult genitourinary specialists lack training within the context of CGCs. To address these challenges, the National Institutes of Diabetes and Digestive and Kidney Diseases convened individuals with CGCs and experts from a variety of fields to identify research needs to improve transitional urology care. This paper outlines identified research needs.

The Managing Epilepsy Well Network:: Advancing Epilepsy Self-Management.

Epilepsy, a complex spectrum of disorders, affects about 2.9 million people in the U.S. Similar to other chronic disorders, people with epilepsy face challenges related to management of the disorder, its treatment, co-occurring depression, disability, social disadvantages, and stigma. Two national conferences on public health and epilepsy (1997, 2003) and a 2012 IOM report on the public health dimensions of epilepsy highlighted important knowledge gaps and emphasized the need for evidence-based, scalable epilepsy self-management programs. The Centers for Disease Control and Prevention translated recommendations on self-management research and dissemination into an applied research program through the Prevention Research Centers Managing Epilepsy Well (MEW) Network. MEW Network objectives are to advance epilepsy self-management research by developing effective interventions that can be broadly disseminated for use in people's homes, healthcare providers' offices, or in community settings. The aim of this report is to provide an update on the MEW Network research pipeline, which spans efficacy, effectiveness, and dissemination. Many of the interventions use e-health strategies to eliminate barriers to care (e.g., lack of transportation, functional limitations, and stigma). Strengths of this mature research network are the culture of collaboration, community-based partnerships, e-health methods, and its portfolio of prevention activities, which range from efficacy studies engaging hard-to-reach groups, to initiatives focused on provider training and knowledge translation. The MEW Network works with organizations across the country to expand its capacity, help leverage funding and other resources, and enhance the development, dissemination, and sustainability of MEW Network programs and tools. Guided by national initiatives targeting chronic disease or epilepsy burden since 2007, the MEW Network has been responsible for more than 43 scientific journal articles, two study reports, seven book chapters, and 62 presentations and posters. To date, two programs have been adopted and disseminated by the national Epilepsy Foundation, state Epilepsy Foundation affiliates, and other stakeholders. Recent expansion of the MEW Network membership will help to extend future reach and public health impact.

Improving Self-Management Skills Through Patient-Centered Communication.

PURPOSE: We tested relationships between patient-centered communication (PCC), relatedness to health care providers, and autonomy around health care management among youth with and without mobility limitations (MLs) and examined whether the relationship between PCC and autonomy was mediated by how connected youth feel to their health care providers. METHODS: Stratified multiple regression models were used to examine predicted associations for youth with and without MLs. RESULTS: PCC was significantly associated with relatedness to health care providers and autonomy for managing health care among youth with and without MLs. After controlling for covariates, evidence of mediation was observed among youth without MLs but not for youth with MLs. CONCLUSIONS: For youth without MLs, mediation suggests that youth's connection to their health care provider contributes to higher levels of health-related autonomy. For youth with MLs, independent of feeling connected to health care providers, more frequent PCC resulted in higher levels of health-related autonomy.

Distressed and looking for help: Internet intervention support for arthritis self-management.

PURPOSE: Focusing on youth with juvenile arthritis (JA), this study investigates eHealth interventions as a means to develop services to improve the health of youth with chronic conditions. Internet use and preferences for Internet-based interventions were compared among youth with high and low psychosocial quality of life (PS-QL) scores. METHODS: Youth with JA (n = 134; high PS-QL, n = 67; low PS-QL, n = 67) completed the MyRheum online survey, which assessed physical functioning, psychosocial health, Internet usage, and amount of time spent using social networking Web sites. Youth indicated their choice, interest, and preferences in using a Web site for youth with JA. The t tests, chi-squared tests, and Fisher exact tests were used to assess significance between high and low PS-QL groups. RESULTS: Youth with lower PS-QL reported greater intrusiveness of their condition across life's activities than did youth with higher PS-QL. Low PS-QL was associated with spending more than 1 hour per day using social networking sites and having used the Internet to find information on various health and substance use topics. Youth with lower PS-QL expressed more interest in messaging others, online forums, building personal profiles, and networking with other teens than did youth with higher PS-QL. Both those with high and low PS-QL preferred online to in-person support groups. CONCLUSIONS: Many youth with JA report low PS-QL and identify interest in Internet-based supportive interventions. The next generation of eHealth interventions for youth with JA, and possibly other chronic conditions, may better address their needs by recognizing the diversity of experiences and tailoring intervention strategies accordingly.

Disability and Discussions of Health-Related Behaviors Between Youth and Health Care Providers.

PURPOSE: The purpose of this study was to examine the likelihood of discussing health-related behaviors with health care providers (HCPs), comparing youth with and without mobility limitations (MLs). METHODS: Analyses were conducted using baseline data from the MyPath study. Adolescents and young adults between the ages of 16 and 24 years completed a survey about their health care and health-related experiences. Analyses assessed the relationship between mobility status and discussing health-related behaviors with an HCP. Secondary analyses examined the extent to which adolescents and young adults' engagement in these behaviors was associated with these discussions. RESULTS: Overall, we found low rates of discussions about the following topics: substance use, sexual and reproductive health, healthy eating, weight, and physical activity. Adolescents and young adults with MLs were less likely to report discussing substance use and sexual and reproductive health, but were more likely to discuss healthy eating, weight, and physical activity than peers without MLs. Those adolescents and young adults who reported substance use had higher odds of discussing this topic and those who reported having sexual intercourse had higher odds of discussing sexual and reproductive health. CONCLUSIONS: Results suggest mobility status and a young person's engagement in health risk and promoting behaviors are associated with the likelihood of discussing these behaviors with an HCP. It is important that HCPs view adolescents and young adults with MLs as needing the same counseling and guidance about health-related behaviors as any young person presenting him/herself for treatment.

Measuring quality of life in muscular dystrophy.

OBJECTIVES: The objectives of this study were to develop a conceptual model of quality of life (QOL) in muscular dystrophies (MDs) and review existing QOL measures for use in the MD population. METHODS: Our model for QOL among individuals with MD was developed based on a modified Delphi process, literature review, and input from patients and patient advocacy organizations. Scales that have been used to measure QOL among patients with MD were identified through a literature review and evaluated using the COSMIN (Consensus-Based Standards for the Selection of Health Measurement Instruments) checklist. RESULTS: The Comprehensive Model of QOL in MD (CMQM) captures 3 broad domains of QOL (physical, psychological, and social), includes factors influencing self-reported QOL (disease-related factors, support/resources, and expectations/aspirations), and places these concepts within the context of the life course. The literature review identified 15 QOL scales (9 adult and 6 pediatric) that have been applied to patients with MD. Very few studies reported reliability data, and none included data on responsiveness of the measures to change in disease progression, a necessary psychometric property for measures included in treatment and intervention studies. No scales captured all QOL domains identified in the CMQM model. CONCLUSIONS: Additional scale development research is needed to enhance assessment of QOL for individuals with MD. Item banking and computerized adaptive assessment would be particularly beneficial by allowing the scale to be tailored to each individual, thereby minimizing respondent burden.

Family out-of-pocket health care burden and children's unmet needs or delayed health care.

OBJECTIVE: To assess the relationship between family members' out-of-pocket (OOP) health care spending and unmet needs or delayed health care due to cost for children with and without special health care needs (SHCN). METHODS: Data come from the Medical Expenditure Panel Survey, 2002-2009, and include 63,462 observations representing 41,748 unique children. The primary outcome was having any unmet needs/delayed care as a result of the cost of medical care, dental care, or prescription drugs. We also examined having unmet needs/delayed care due to cost for each service separately. Key explanatory variables were OOP spending on the index child and OOP spending on other family members. We estimated multivariate instrumental variable models to adjust the results for potential bias from any unobserved factors that might influence both other family OOP costs and the outcome variable. RESULTS: An increase of other family OOP costs from $500 (50th percentile) to $3000 (90th percentile) was associated with a higher adjusted rate of any unmet need/delayed care due to cost (1.39% to 5.62%, P < .001, among children without SHCN; 3.17% to 7.87%, P = .01, among those with SHCN). Among children without SHCN, higher OOP costs among other family members were associated with higher levels of unmet needs or delays in medical, prescription drug, and dental care, while among children with SHCN, higher OOP costs among other family members was primarily associated with unmet or delayed dental care. CONCLUSIONS: Programs and policies that reduce the OOP costs of family members other than the child may improve the child's access to care.

Youth report of healthcare transition counseling and autonomy support from their rheumatologist.

BACKGROUND: To increase understanding of the healthcare transition (HCT) process for young people living with Juvenile Idopathic Arthritis (JIA) by examining: 1) the extent to which youth report discussing HCT topics with their rheumatologist and 2) the association between youth perceptions of autonomy support from their rheumatologist and HCT discussions. METHODS: Data are from an online survey of youth in the United States with rheumatologic conditions (n= 134). HCT discussion was measured by 4 questions from the National Survey of Children with Special Health Care Needs. Youth perception of autonomy support was measured using a validated 6-item scale. RESULTS: One third of the youth (33.7%) reported talking to their rheumatologist about transferring to adult medicine. Less than half (40.8%) of respondents talked with their rheumatologist about adult healthcare needs, and less than a quarter (22.0%) discussed acquiring health insurance as an adult. Nearly two-thirds of respondents (62.7%) reported that their rheumatologist usually/always encourages self-care responsibility. Multivariate analyses revealed significant associations between rheumatologist support for youth autonomy and HCT counseling. CONCLUSION: The low frequency of HCT counseling reported indicates a continuing need to increase awareness among rheumatologist in the USA. The strong associations between rheumatologist's support for youth autonomy and HCT counseling suggest that developmentally "in-tune" providers may deliver the best guidance about transition planning for youth living with arthritis.

Shared decision making: improving care for children with autism.

We assessed the extent to which parents of children with autism spectrum disorder report that they are engaged in shared decision making. We measured the association between shared decision making and (a) satisfaction with care, (b) perceived guidance regarding controversial issues in autism spectrum disorder, and (c) perceived assistance navigating the multitude of treatment options. Surveys assessing primary medical care and decision-making processes were developed on the basis of the U.S. Department of Health and Human Service's Consumer Assessment of Healthcare Providers and Systems survey. In May 2009, after pilot testing, we sent surveys to 203 parents of children from ages 3 to 18 with International Classification of Diseases-9 and parent-confirmed autism spectrum disorder diagnoses. The response rate was 64%. Controlling for key demographic variables, parents of children with autism spectrum disorder reporting higher levels of shared decision making reported significantly greater satisfaction with the overall quality of their child's health care (p ≤ .0001). Parents reporting higher levels of shared decision making were also significantly more likely to report receiving guidance on the many treatment options (p  =  .0002) and controversial issues related to autism spectrum disorder (p  =  .0322). In this study, shared decision making was associated with higher parent satisfaction and improved guidance regarding treatments and controversial issues within primary care for children with autism spectrum disorder.

Complementary and alternative medicine use among youth with juvenile arthritis: are youth using CAM, but not talking about it?

PURPOSE: To examine self-reported use and correlates of complementary and alternative medicine (CAM) in adolescents with juvenile arthritis (JA). METHODS: One hundred thirty-four adolescents with JA completed an online survey of their use of, interest in, and discussions about CAM. The PedsQL 4.0 SF15 assessed quality of life. RESULTS: The majority (72%) of youth reported using ≥1 CAM modality. Use did not differ by sex, age, race, or geographic location. The most commonly used CAM modalities were yoga (45%) and meditation, relaxation, or guided imagery (40%). Low psychosocial quality of life was associated with massage and meditation, relaxation, or guided imagery use (p < .05). Only 46% of youth reported discussing CAM with a health care provider. Nonusers were most interested in learning more about massage (79%) and yoga (57%). CONCLUSIONS: Youth with JA reported high use of CAM, but few discussed CAM with health care providers. Findings suggest practitioners should engage adolescents in discussions about CAM.