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- Autism (1)
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AHRQ Research Studies
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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
Results
1 to 10 of 10 Research Studies DisplayedLindly OJ, Martin AJ, Lally K
A profile of care coordination, missed school days, and unmet needs among Oregon children with special health care needs with behavioral and mental health conditions.
In order to inform Oregon's Title V needs assessment activities, researchers sought to characterize the state's subpopulation of children with special health care needs (CSHCN) with behavioral and mental health conditions (B/MHC) and to determine associations of care coordination with missed school days and unmet needs for this subpopulation. They found that among Oregon CSHCN with B/MHC, 48.9% missed 4 or more school days, 25% had one or more unmet health services need, and 14.8% had one or more unmet family support services need. They concluded that their approach to identify Oregon CSHCN with B/MHC may be adopted by other states endeavoring to improve health for this vulnerable subpopulation.
AHRQ-funded; HS000063.
Citation: Lindly OJ, Martin AJ, Lally K .
A profile of care coordination, missed school days, and unmet needs among Oregon children with special health care needs with behavioral and mental health conditions.
Community Ment Health J 2020 Nov;56(8):1571-80. doi: 10.1007/s10597-020-00609-4..
Keywords: Children/Adolescents, Disabilities, Behavioral Health, Care Coordination, Healthcare Delivery
Lindly O, Crossman M, Eaves M
Health literacy and health outcomes among children with developmental disabilities: a systematic review.
This systematic literature review focused on the impact of health literacy on health outcomes of children with developmental disabilities (DDs). A review of the literature of most of the major scientific databases was conducted. Out of 2,768 unique records identified, 53 full text articles were reviewed and four articles were included. The associations of family health literacy with health outcomes among children with DDs were mixed. Future research was recommended.
AHRQ-funded; HS000063.
Citation: Lindly O, Crossman M, Eaves M .
Health literacy and health outcomes among children with developmental disabilities: a systematic review.
Am J Intellect Dev Disabil 2020 Sep 1;125(5):389-407. doi: 10.1352/1944-7558-125.5.389..
Keywords: Children/Adolescents, Health Literacy, Disabilities, Evidence-Based Practice, Patient-Centered Outcomes Research, Outcomes
Zuckerman KE, Chavez AE, Regalado Murillo C
Disparities in familiarity with developmental disabilities among low-income parents.
Parent knowledge about developmental disabilities (DDs) may facilitate access to DD care; however, parents may vary in their knowledge and familiarity with common DDs. The objective of this study was to assess racial/ethnic and language differences in low-income families' familiarity, knowledge, and personal experience with DDs. The investigators concluded that low-income Latino-LEP and other race parents have less familiarity or personal experience with DDs and are less aware of early signs of DDs compared to low-income white parents.
AHRQ-funded; HS000063.
Citation: Zuckerman KE, Chavez AE, Regalado Murillo C .
Disparities in familiarity with developmental disabilities among low-income parents.
Acad Pediatr 2018 Nov - Dec;18(8):944-51. doi: 10.1016/j.acap.2018.06.011..
Keywords: Disabilities, Children/Adolescents, Caregiving, Health Literacy, Low-Income, Vulnerable Populations, Racial and Ethnic Minorities
Perez Jolles M, Thomas KC
Disparities in self-reported access to patient-centered medical home care for children with special health care needs.
The purpose of this study was to examine variation in caregiver service experience concordant with care in patient-centered medical home (PCMH) over time and by the characteristics of separate groups of children with special health care needs (CSHCNs). Researchers used 2003-2012 Medical Expenditures Panel Survey data for CSHCNs for cross-sectional pooled data analysis. Their conclusions suggest that disparities remain among high-need CSHCNs. Future research that focuses on a better understanding of how clinical settings tailor this care model, particularly to provide increased access and patient-centered care, is recommended.
AHRQ-funded; HS000032.
Citation: Perez Jolles M, Thomas KC .
Disparities in self-reported access to patient-centered medical home care for children with special health care needs.
Med Care 2018 Oct;56(10):840-46. doi: 10.1097/mlr.0000000000000978..
Keywords: Access to Care, Children/Adolescents, Disabilities, Disparities, Medical Expenditure Panel Survey (MEPS), Patient-Centered Healthcare, Vulnerable Populations
Jolles MP, Lee PJ, Javier JR
Shared decision-making and parental experiences with health services to meet their child's special health care needs: racial and ethnic disparities.
This study investigated the relationship between shared decision-making (SDM) and parents’ frustrations in getting health needs met for their special needs child. Secondary analysis was done on data from the 2009-2010 National Survey of Children with Special Health Care Needs. More Whites than Blacks engaged in SDM, and when Blacks did engage they had a higher odds of negative experiences than Whites. Researchers weren’t sure what the cause was of that, but speculated it was due to increased awareness of service challenges.
AHRQ-funded; HS000032.
Citation: Jolles MP, Lee PJ, Javier JR .
Shared decision-making and parental experiences with health services to meet their child's special health care needs: racial and ethnic disparities.
Patient Educ Couns 2018 Oct;101(10):1753-60. doi: 10.1016/j.pec.2018.05.022..
Keywords: Access to Care, Caregiving, Children/Adolescents, Decision Making, Disabilities, Disparities, Racial and Ethnic Minorities
Crossman MK, Parish SL, Hauser-Cram P
The influence of early intervention, informal support and the family environment on trajectories of competence for fathers raising children with developmental disabilities.
The aims of this study are: (1) To determine the trajectory of parental competence for fathers of children with developmental disabilities from age 3 to age 15; (2) Controlling for child and family characteristics, determine the main effects of the family environment, informal support, and early intervention (EI) services on paternal competence when their child with a developmental disability was age 3; and (3) To determine whether there were lasting effects of the family environment, informal support, and the EI service system on differences in paternal competence over time.
AHRQ-funded; HS000063.
Citation: Crossman MK, Parish SL, Hauser-Cram P .
The influence of early intervention, informal support and the family environment on trajectories of competence for fathers raising children with developmental disabilities.
Res Dev Disabil 2018 Oct;81:122-33. doi: 10.1016/j.ridd.2018.04.025..
Keywords: Caregiving, Children/Adolescents, Disabilities, Family Health and History
Lindly OJ, Thorburn S, Heisler K
Parents' use of complementary health approaches for young children with autism spectrum disorder.
Researchers conducted a study to better understand factors influencing parents' decision to use complementary health approaches (CHA) for children with autism spectrum disorder (ASD). CHA use was negatively associated with older child age and positively associated with parents' belief ASD has major consequences and medication use. Nine themes help explain these results.
AHRQ-funded; HS000063.
Citation: Lindly OJ, Thorburn S, Heisler K .
Parents' use of complementary health approaches for young children with autism spectrum disorder.
J Autism Dev Disord 2018 May;48(5):1803-18. doi: 10.1007/s10803-017-3432-6.
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Keywords: Autism, Children/Adolescents, Complementary and Alternative Medicine, Decision Making, Disabilities
Crossman MK, Warfield ME, Kotelchuck M
Associations between early intervention home visits, family relationships and competence for mothers of children with developmental disabilities.
The researchers examined the association between intensity of home visits in early intervention (EI), perceived helpfulness of home visits in EI, and positive family relationships as predictors of maternal competence at age 3, as well as moderating effects of predictors, controlling for child characteristics, family demographics, and negative life events. They found that the intensity of home visits was not significantly associated with maternal competence at age 3.
AHRQ-funded; HS000063.
Citation: Crossman MK, Warfield ME, Kotelchuck M .
Associations between early intervention home visits, family relationships and competence for mothers of children with developmental disabilities.
Matern Child Health J 2018 Apr;22(4):599-607. doi: 10.1007/s10995-018-2429-x.
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Keywords: Children/Adolescents, Disabilities, Family Health and History, Patient and Family Engagement
Lindly O, Thorburn S, Zuckerman K
Use and nondisclosure of complementary health approaches among US children with developmental disabilities.
The researchers aimed to profile the use and nondisclosure of complementary health approaches (CHAs) among US children with developmental disabilities (DDs). They found that nearly one-quarter (23 percent) of US children with DDs used CHAs. Among those with a personal health provider, 42 percent of parents did not disclose some or all CHAs used to the child's provider.
AHRQ-funded; HS000063.
Citation: Lindly O, Thorburn S, Zuckerman K .
Use and nondisclosure of complementary health approaches among US children with developmental disabilities.
J Dev Behav Pediatr 2018 Apr;39(3):217-27. doi: 10.1097/dbp.0000000000000536.
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Keywords: Children/Adolescents, Complementary and Alternative Medicine, Decision Making, Disabilities
Lewis AH, Chugh A, Sobotka SA
Behavioral outbursts in a child with a deletion syndrome, generalized epilepsy, global developmental delay, and failure to thrive.
This paper presents the case of a 7-year-old girl with 20q13.33 deletion and a history of generalized convulsive epilepsy who presented to the Developmental and Behavioral Pediatrics Clinic due to concerns about her behavioral outbursts in the context of overall delayed development.
AHRQ-funded; HS023007.
Citation: Lewis AH, Chugh A, Sobotka SA .
Behavioral outbursts in a child with a deletion syndrome, generalized epilepsy, global developmental delay, and failure to thrive.
Pediatr Ann 2018 Mar;47(3):e130-e34. doi: 10.3928/19382359-20180223-01..
Keywords: Case Study, Children/Adolescents, Disabilities, Genetics, Neurological Disorders