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Topics
- Access to Care (2)
- Autism (2)
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- Case Study (1)
- Children/Adolescents (9)
- Community-Based Practice (1)
- Complementary and Alternative Medicine (2)
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- (-) Disabilities (14)
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- Quality of Life (1)
- Racial and Ethnic Minorities (2)
- Rehabilitation (1)
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- Screening (1)
- Social Determinants of Health (1)
- Social Stigma (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 14 of 14 Research Studies DisplayedZuckerman 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
Zuckerman KE, Lindly OJ, Reyes NM
Parent perceptions of community autism spectrum disorder stigma: measure validation and associations in a multi-site sample.
In this study, the investigators developed a brief, English/Spanish bilingual parent-reported scale of perceived community autism spectrum disorder (ASD) stigma and tested it in a multi-site sample of Latino and non-Latino white parents of children with ASD.
AHRQ-funded; HS000063.
Citation: Zuckerman KE, Lindly OJ, Reyes NM .
Parent perceptions of community autism spectrum disorder stigma: measure validation and associations in a multi-site sample.
J Autism Dev Disord 2018 Sep;48(9):3199-209. doi: 10.1007/s10803-018-3586-x..
Keywords: Autism, Disabilities, Social Stigma, Social Determinants of Health, Behavioral Health
Sen AP, Chen LM, Wong Samson L
Performance in the Medicare Shared Savings Program by accountable care organizations disproportionately serving dual and disabled populations.
The purpose of this study was to examine performance by accountable care organizations (ACOs) in the top quintile of their proportion of beneficiaries who were dually enrolled in Medicare and Medicaid (high-dual), and the top quintile of disabled beneficiaries (high-disabled). Measures used were quality scores, savings per beneficiary, whether or not the ACO shared savings and the amount of shared savings. The researchers found that high-dual and high-disabled ACOs had similar or higher spending than other ACOs at baseline, but achieved greater savings and were equally or more likely to earn shared savings; alternative payment models can have positive financial outcomes for providers serving vulnerable populations.
AHRQ-funded; HS024698.
Citation: Sen AP, Chen LM, Wong Samson L .
Performance in the Medicare Shared Savings Program by accountable care organizations disproportionately serving dual and disabled populations.
Med Care 2018 Sep;56(9):805-11. doi: 10.1097/mlr.0000000000000968..
Keywords: Disabilities, Medicare, Healthcare Costs, Provider Performance, Payment, Low-Income, Vulnerable Populations
Skolasky RL, Scherer EA, Wegener ST
Does reduction in sciatica symptoms precede improvement in disability and physical health among those treated surgically for intervertebral disc herniation? Analysis of temporal patterns in data from the Spine Patient Outcomes Research Trial.
This study aimed to evaluate pathways for improvements in quality of life during the first year after surgery for IDH by studying temporal relationships between sciatica symptoms, pain-related disability, and physical health. Investigators found that three months after surgery, patients reported reduced sciatica and pain-related disability. Early reduction in pain-related disability is important because path analysis indicated that disability at 3 months was predictive of sciatica and physical health at 1 year.
AHRQ-funded; HS017990; HS016106.
Citation: Skolasky RL, Scherer EA, Wegener ST .
Does reduction in sciatica symptoms precede improvement in disability and physical health among those treated surgically for intervertebral disc herniation? Analysis of temporal patterns in data from the Spine Patient Outcomes Research Trial.
Spine J 2018 Aug;18(8):1318-24. doi: 10.1016/j.spinee.2017.11.016.
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Keywords: Disabilities, Outcomes, Pain, Patient-Centered Outcomes Research, Quality of Life, Surgery
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
Graham JE, Middleton A, Roberts P
Health services research in rehabilitation and disability-the time is now.
In this Special Communication, the authors discuss the role of rehabilitation researchers in health services research (HSR). They also provide information on current resources available in our field for conducting HSR and identify gaps for capacity building and future research. Health care reforms are a reality, and through HSR, researchers can give rehabilitation a strong voice during these transformative times.
AHRQ-funded; HS022134.
Citation: Graham JE, Middleton A, Roberts P .
Health services research in rehabilitation and disability-the time is now.
Arch Phys Med Rehabil 2018 Jan;99(1):198-203. doi: 10.1016/j.apmr.2017.06.026.
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Keywords: Disabilities, Health Services Research (HSR), Patient-Centered Healthcare, Rehabilitation
Okumura MJ, Saunders M, Rehm RS
The role of health advocacy in transitions from pediatric to adult care for children with special health care needs: bridging families, provider and community services.
The aim of this study was to develop a theoretical understanding of how family, healthcare providers, and community supports can assist youth and young adults with special healthcare needs (YASHCN) during the transition from pediatric to adult healthcare and services. Transition Advocacy consists of the presence of, or need for, a healthcare advocate who did or can assist the YASHCN with the healthcare transition, particularly to navigate complex health or community services. If advocates were identified, youth were more likely to obtain needed services.
AHRQ-funded; HS017716.
Citation: Okumura MJ, Saunders M, Rehm RS .
The role of health advocacy in transitions from pediatric to adult care for children with special health care needs: bridging families, provider and community services.
J Pediatr Nurs 2015 Sep-Oct;30(5):714-23. doi: 10.1016/j.pedn.2015.05.015.
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Keywords: Children/Adolescents, Community-Based Practice, Disabilities, Health Services Research (HSR), Young Adults
Horner-Johnson W, Dobbertin K, Iezzoni LI
Disparities in receipt of breast and cervical cancer screening for rural women age 18 to 64 with disabilities.
The authors examined the combination of disability status and rurality in association with receipt of breast and cervical cancer screening among women age 18 to 64 in the United States. They found that women with disabilities were less likely to be up to date with mammograms and Pap tests compared with women with no disabilities, and women in rural areas were less likely to have received breast or cervical cancer screening within recommended timeframes. Women with a disability who lived in a rural area were the least likely to be current with screening.
AHRQ-funded; HS022981.
Citation: Horner-Johnson W, Dobbertin K, Iezzoni LI .
Disparities in receipt of breast and cervical cancer screening for rural women age 18 to 64 with disabilities.
Womens Health Issues 2015 May-Jun;25(3):246-53. doi: 10.1016/j.whi.2015.02.004.
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Keywords: Cancer, Disabilities, Medical Expenditure Panel Survey (MEPS), Rural Health, Screening