Person:

Kuhlthau, Karen

Family-centered care (FCC) is a partnership approach to health care decision-making between the family and health care provider. FCC is considered the standard of pediatric health care by many clinical practices, hospitals, and health care groups. Despite widespread endorsement, FCC continues to be insufficiently implemented into clinical practice. In this paper we enumerate the core principles of FCC in pediatric health care, describe recent advances applying FCC principles to clinical practice, and propose an agenda for practitioners, hospitals, and health care groups to translate FCC into improved health outcomes, health care delivery, and health care system transformation.

Background: Significant disparities exist in children’s receipt of preventive dental care (PDC) in the United States. Many of the children at greatest risk of dental disease do not receive timely PDC; when they do receive dental care, it is often more for relief of dental pain. Chelsea is a low-income, diverse Massachusetts community with high rates of untreated childhood caries. There are various dental resources available in Chelsea, yet many children do not access dental care at levels equivalent to their needs. Objective: Using Chelsea as a case-study, to explore factors contributing to forgone PDC (including the age 1 dental visit) in an in-depth way. Methods: We used a qualitative study design that included semi-structured interviews with parents of preschool children residing in Chelsea, and Chelsea-based providers including pediatricians, dentists, a dental hygienist and early childhood care providers. We examined: a) parents’ dental attitudes and oral health cultural beliefs; b) parents’ and providers’ perspectives on facilitators and barriers to PDC, reasons for unmet needs, and proposed solutions to address the problem. We recorded, transcribed and independently coded all interviews. Using rigorous, iterative qualitative data analyses procedures, we identified emergent themes. Results: Factors perceived to facilitate receipt of PDC included Head-Start oral health policies, strong pediatric primary care/dental linkages, community outreach and advertising, and parents’ own oral health experiences. Most parents and providers perceived there to be an adequate number of accessible dental services and resources in Chelsea, including for Medicaid enrollees. However, several barriers impeded children from receiving timely PDC, the most frequently cited being insurance related problems for children and adults. Other barriers included limited dental services for children <2 years, perceived poor quality of some dental practices, lack of emphasis on prevention-based dental care, poor care-coordination, and insufficient culturally-appropriate care. Important family-level barriers included parental oral health literacy, cultural factors, limited English proficiency and competing priorities. Several solutions were proposed to address identified barriers. Conclusion: Even in a community with a considerable number of dental resources, various factors may preclude access to these services by preschool-aged children. Opportunities exist to address modifiable factors through strategic oral health policies, community outreach and improved care coordination between physicians, dentists and early childhood care providers.

Objectives: To examine whether the medical home, care coordination, or family-centered care was associated with less impact of type 1 diabetes (T1D) on families’ work, finances, time, and school attendance. Study design: Using the 2005–2006 National Survey of Children with Special Health Care Needs, we compared impacts among children with T1D (n=583), with other special health care needs (n=39,944), and without special health care needs (n=4,945). We modeled the associations of the medical home, care coordination and family-centered care with family impacts in T1D. Results: In families of children with T1D, 75% reported a major impact versus 45% of families of children with special health care needs (p<0.0001) and 17% of families of children without special health care needs (p<0.0001). In families of children with T1D, 35% reported restricting work, 38% reported financial impact, 41% reported medical expenses >$1000/year, 24% reported spending ≥11 hours/week caring or coordination care and 20% reported ≥11 school absences/year. The medical home, care coordination and family-centered care were associated with less work and financial impacts. Conclusions: In childhood T1D, most families experience major impacts. Better systems of health care delivery may help families reduce some of these impacts.

Objective: To extend development of a pediatric inflammatory bowel disease (IBD) health-related quality of life (HRQoL) measure by determining its factor structure and associations of factors with generic HRQoL measures and clinical variables. Patients and Methods: Cross-sectional survey of children and adolescents ages 8 years to 18 years and their parents attending any of 6 US IBD centers, recruited from either existing registry of age-eligible subjects or visits to participating centers. The survey included generic (Pediatric Quality of Life Inventory) and IBD-specific (Impact Questionnaire) quality of life measures, disease activity, and other clinical indicators. We carried out factor analysis of Impact responses, comparing resulting factors with results on the generic HRQoL and the clinical measures. Results: We included 220 subjects (161 with Crohn disease and 59 with ulcerative colitis). Initial confirmatory factor analysis did not support the 6 proposed Impact domains. Exploratory factor analysis indicated 4 factors with good to excellent reliability for IBD responses: general well-being and symptoms, emotional functioning, social interactions, and body image. Two items did not load well on any factor. The 4 factors correlated well with the Pediatric Quality of Life Inventory and subscales. Children with higher disease activity scores and other indicators of clinical activity reported lower HRQoL. Conclusions: This study provides further characteristics of a HRQoL measure specific to pediatric IBD and indicates ways to score the measure based on the resulting factor structure. The measure correlates appropriately with generic HRQoL measures and clinical severity indicators.

Objective: To compare costs of redetermining disability to direct savings in SSI payments associated with different strategies for implementing Continuing Disability Reviews (CDRs) among children potentially enrolled in SSI from 2012–2021. Methods: We reviewed publicly available reports from the Social Security Administration (SSA) and Government Accountability Office (GAO) to estimate costs and savings. We considered CDRs for children ages 1–17 years, excluding mandated Low-Birth Weight and Age 18 Redeterminations that SSA has routinely carried out. Results: If SSA in 2012 performs the same number of CDRs for children as in 2010 (16,677, 1% of eligibles) at a cessation rate of 15%, the agency would experience net savings of approximately $145 million in benefit payments. If CDR numbers increased to the highest level ever (183,211, 22% of eligibles, in 1999) at the same cessation rate, the agency would save approximately $1.6 billion in benefit payments. Discussion: Increasing the numbers of CDRs for children represents a considerable opportunity for savings. Recognizing the dynamic nature of disability, the agency could reassess persistence of disability systematically. Doing so could free up resources from children who are no longer eligible and help the agency better direct its benefits to recipients with ongoing disability and whose families need support to meet the extra costs associated with raising a child with a major disability.

Objective: To understand the relationship between several measures of child health status and the employment of parents. Design: A cross-sectional study using 1994 National Health Interview Survey on Disability data. Participants: A nationally representative sample of children and their parents. Outcome Measures: Maternal and paternal employment (measured separately). Intervention: We use a series of logistic regression models with maternal and paternal employment as the dependent variables and the health status of the child with the poorest health status in the family as the primary independent variable. Models additionally include sociodemographic correlates of employment. Results: Having a child with poor health status, as measured by general reported health, hospitalizations, activity limitations, and chronic condition or disability status, is associated with reduced employment of mothers and fathers. For example, the odds ratios of being employed for having a child with an activity limitation are 0.75 for mothers (95% confidence interval, 0.67-0.85) and 0.66 for fathers (95% confidence interval, 0.53-0.82). Conclusions: Having a child with poor health status is associated with reduced maternal and paternal employment. Further studies are needed to determine whether poor child health status causes reductions in parental labor force participation. If such a causal relationship exists, it has important implications for social policy, employment policy, and clinical anticipatory guidance.

Background

The American Academy of Pediatrics and other organizations recommend several screening tests as part of preventive care. The proportion of children who are appropriately screened and who receive follow-up care is low. Objective: To conduct a systematic review of the evidence for practice-based interventions to increase the proportion of patients receiving recommended screening and follow-up services in pediatric primary care. Data source: Medline database of journal citations. Study eligibility criteria, participants, and interventions: We developed a strategy to search Medline to identify relevant articles. We selected search terms to capture categories of conditions (e.g., developmental disabilities, obesity), screening tests, specific interventions (e.g., quality improvement initiatives, electronic records enhancements), and primary care. We searched references of selected articles and reviewed articles suggested by experts. We included all studies with a distinct, primary care-based intervention and post-intervention screening data, and studies that focused on children and young adults (≤21 years of age). We excluded studies of newborn screening. Study appraisal and synthesis methods: Abstracts were screened by 2 reviewers and articles with relevant abstracts received full text review and evaluated for inclusion critieria. A structured tool was used to abstract data from selected articles. Because of heterogeneous interventions and outcomes, we did not attempt a meta-analysis. Results: From 2547 returned titles and abstracts, 23 articles were reviewed. Nine were pre-post comparisons, 5 were randomized trials, 3 were post-intervention comparisons with a control group, 3 were post-intervention cross-sectional analyses only, and 3 reported time series data. Of 14 articles with pre-intervention or control group data and significance testing, 12 reported increases in the proportion of patients appropriately screened. Interventions were heterogeneous and often multifaceted, and several types of interventions, such as provider/staff training, electronic medical record templates/prompts, and learning collaboratives, appeared effective in improving screening quality. Few articles described interventions to track screening results or referral completion for those with abnormal tests. Data were often limited by single-site, non-randomized design. Conclusions: Several feasible, practice- and provider-level interventions appear to increase the quality of screening in pediatric primary care. Evidence for interventions to improve follow-up of screening tests is scant. Future research should focus on which specific interventions are most effective, whether effects are sustained over time, and what interventions improve follow-up of abnormal screening tests.

Objective: To present a conceptual definition of a family-centered system of services for children and youth with special health care needs (CYSHCN). Previous work by the Maternal and Child Health Bureau to define CYSHCN has had widespread program effects. This article similarly seeks to provide a definition of a system of services. Design: Comprehensive literature review of systems of services and consensus panel organized to review and refine the definition. Setting: Policy research group and advisors at multiple sites. Participants: Policy researchers, content experts on CYSHCN, family representatives, and state program directors. Outcome: Definition of a system of services for CYSHCN. Results: This article defines a system of services for CYSHCN as a family-centered network of community-based services designed to promote the healthy development and well-being of these children and their families. The definition can guide discussion among policy makers, practitioners, state programs, researchers, and families for implementing the “community-based systems of services” contained in Title V of the Social Security Act. Critical characteristics of a system include coordination of child and family services, effective communication among providers and the family, family partnership in care provision, and flexibility. Conclusions: This definition provides a conceptual model that can help measurement development and assessment of how well systems work and achieve their goals. Currently available performance objectives for the provision of care for CYSHCN and national surveys of child health could be modified to assess systems of services in general.

Background: Few studies have used preference-based quality of life measures to assess how autism spectrum disorders (ASD) affect children and their parents, and none have examined variation in outcomes by parent-reported ASD severity. We derive utility values associated with varying ASD severity levels for both children with ASD and their parents.

Methods: Parents of children 3-17 years with and without ASD were selected from a nationally representative research panel to complete an internet survey. All survey respondents answered a series of time trade-off (TTO) questions to value their own and their child’s current health state. Respondents were also asked socio-demographic and health questions regarding themselves and their child. Parents of children with ASD were asked to report the severity of their child’s core ASD symptoms based on social communication impairments and restricted repetitive patterns of behavior. We calculated utility values from each TTO amount. We used a two-part regression model to estimate the change in child health utility, and the change in parent health utility, associated with ASD diagnosis and increasing symptom severity, controlling for respondent socio-demographic characteristics, child’s gender, age, insurance status and other non-ASD related illnesses, as well as the presence of other children in the household.

Results: 69% of parents responded. We eliminated 9% of respondents due to missing or invalid responses, leaving an analysis sample size of 255 (135 parents of children with ASD and 120 parents of children without ASD). In adjusted analyses, having any form of ASD was significantly associated with a 0.11 (95% CI: 0.03-0.20) decrease in child health utility, a 14% decrease from the mean health utility of children without ASD. On average, having a child with ASD was not significantly associated with parent health utility, but having a child categorized as high severity was associated with a 0.14 (95% CI: 0.01-0.26) reduction in parent health utility, a 15% decrease from the comparison group mean.

Conclusions: ASD has a large impact on child health utility values. We did not find an association between parent health utility and ASD, on average, but having a child with the most severe symptoms was associated with decreased parent health utility.