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Health System Research Priorities for Children and Youth With Special Health Care Needs

Health System Research Priorities for Children and Youth With Special Health Care Needs

Children and youth with special health care needs (CYSHCN) have, or are at an increased risk for, chronic physical, developmental, behavioral, or emotional conditions and also require health and related services of a type or amount beyond that required by children generally.

HIP Investigator, Dr. Ryan Coller et al. synthesized the opinions of a national multidisciplinary group of CYSHCN experts, including family caregivers, to prioritize research topics facing CYSHCN. Authors sought to take a foundational step toward developing a national research agenda for CYSHCN systems of care.

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Girl with Diabetes

Factors associated with health psychology use in pediatric type 1 diabetes

Factors associated with health psychology use in pediatric type 1 diabetes

For children with type 1 diabetes (T1D), self-management is complex and requires coordination between a child and his or her family multiple times every day to test blood sugars, determine and administer insulin doses, and adjust as needed. The consequences of suboptimal self-management are a combination of short- and long-term complications, some of which are life-threatening.

In this publication, HIP Investigator Dr. Elizabeth Cox et al. evaluated the prevalence of health psychology use in children with T1D and the association of this use with individual and contextual characteristics.

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Impact of family‐centered tailoring of pediatric diabetes self‐management resources

Impact of family‐centered tailoring of pediatric diabetes self‐management resources

Behavioral interventions to improve self‐management, glycemic control, or quality of life (QOL) for children with type 1 diabetes have small to moderate positive effects, but a host of challenges diminishes their effectiveness in practice. A group of authors including HIP Investigator, Dr. Elizabeth Cox evaluated the hypothesis that delivering self‐management resources in a family‐centered manner, using PRISM to guide resource selection, will result in better glycemic control and quality of life for children and their parents.

Authors found that tailored self‐management resources may improve outcomes among specific populations, suggesting the need to consider families' self‐management barriers and patient characteristics before implementing self‐management resources.

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Earlier Hospital Discharge With Prospectively Designated Discharge Time in the Electronic Health Record

Earlier Hospital Discharge With Prospectively Designated Discharge Time in the Electronic Health Record

Hospital discharge requires multidisciplinary coordination. Insufficient coordination impacts patient flow, resource use, and postdischarge outcomes. A team of authors including HIP Investigator, Dr. Ryan Coller implemented a prospective, multidisciplinary discharge timing designation in the electronic health record (EHR) and evaluated its association with discharge timing.

The group found that the implementation of a prospective, multidisciplinary EHR discharge time designation was associated with more before-noon discharges. Next steps include replicating results in other settings and determining populations that are most responsive to discharge coordination efforts.

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Investigating lupus retention in care to inform interventions for disparities reduction: an observational cohort study

Investigating lupus retention in care to inform interventions for disparities reduction: an observational cohort study

Systemic lupus erythematosus (SLE) is an autoimmune disease that disproportionately impacts young women, patients of color, and the socioeconomically disadvantaged, making SLE an important target for health disparity measurement and research. HIP Investigator, Dr. Christie Bartels et al. applied WHO-endorsed metrics that helped reduce similar disparities in HIV to investigate relationships between race, disadvantage, and retention in care in an urban lupus cohort. The authors examined predictors of lupus retention in care, developed an SLE Care Continuum, and informed interventions to reduce disparities. Key findings include 40% of patients not being retained at one year, and neighborhood disadvantage was the leading predictor of retention gaps.

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FCR

System Factors Influencing the Use of a Family-Centered Rounds Checklist

System Factors Influencing the Use of a Family-Centered Rounds Checklist

Checklists are used to operationalize care processes and enhance patient safety; however, checklist implementation is difficult within complex health systems. A family-centered rounds (FCR) checklist increased physician performance of key rounding activities, which were associated with improved parent engagement, safety perceptions, and behaviors. To inform FCR checklist implementation and dissemination, a team of authors including HIP Investigator, Dr. Elizabeth Cox assessed physician compliance with this checklist and factors influencing its use.

Authors found that multiple factors within hospital systems may influence FCR checklist use. Strategies, such as providing rounding schedules and mobile computers, may promote optimal engagement of families during rounds and promote pediatric patient safety.

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Anxiety and Hypertension: Is There a Link? A Literature Review of the Comorbidity Relationship Between Anxiety and Hypertension

Anxiety and Hypertension: Is There a Link? A Literature Review of the Comorbidity Relationship Between Anxiety and Hypertension

There is increasing evidence of a positive association between comorbid anxiety and hypertension. This contemporaneous review by HIP Investigator, Dr. Heather Johnson supports similar findings in historical studies and provides mechanistic hypotheses for larger, longitudinal studies. The objective of this review is to summarize contemporaneous studies evaluating the relationship between prevalent anxiety and comorbid prevalent hypertension, or the development of incident (future) hypertension.

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Qualitative Research on Expanded Prenatal and Newborn Screening: Robust but Marginalized

Qualitative Research on Expanded Prenatal and Newborn Screening: Robust but Marginalized

Screening technologies are iteratively transforming how people experience pregnancy and early parenting. A new class of newborn patients are being created and that particular forms of parental vigilance were emerging. HIP Investigator Dr. Rachel Grob wrote extensive qualitative literature that documents all of these social phenomena, and more, in connection with the spread of prenatal and newborn screening.

This essay uses qualitative research on prenatal and newborn screening as a case study for illustrating the broad methodological, ideological, and dialogical issues at stake.

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Evaluating Integrated Care for Children: A Clarion Call or a Call for Clarity?

Evaluating Integrated Care for Children: A Clarion Call or a Call for Clarity?

“Integrated care” is often used to describe concepts such as coordinated and seamless care instead of the often fragmented and episodic care that patients receive. Integrated care reflects the aspirations of modern health care systems and receives significant academic attention. Authors Dr. Eyal Cohen and HIP Investigator, Dr. Ryan Coller conducted a broad search strategy to identify randomized controlled trials comparing integrated care with usual care.

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Pediatric exam at clinic

Reliability and validity of PROMIS® pediatric family relationships short form in children 8-17 years of age with chronic disease

Reliability and validity of PROMIS® pediatric family relationships short form in children 8-17 years of age with chronic disease

Families play a key role in managing pediatric chronic illness. The PROMIS® pediatric family relationships measure was developed primarily within the general pediatric population. HIP Investigator, Dr. Elizabeth Cox et al. evaluated the Family Relationships short form in the context of pediatric chronic diseases and presented their findings as to whether the Family Relationships measure demonstrates adequate reliability and validity when applied in a clinical population of chronically ill children and their parents.

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