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- Access to Care (1)
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- Behavioral Health (2)
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- (-) Children/Adolescents (19)
- Chronic Conditions (5)
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- Neurological Disorders (2)
- Newborns/Infants (1)
- Nutrition (1)
- Outcomes (3)
- Patient-Centered Outcomes Research (3)
- Patient Adherence/Compliance (1)
- Patient Self-Management (1)
- (-) Quality of Life (19)
- Respiratory Conditions (3)
- Risk (1)
- Shared Decision Making (1)
- Sickle Cell Disease (2)
- Skin Conditions (1)
- Sleep Problems (2)
- Transplantation (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 19 of 19 Research Studies DisplayedCanvasser J, Patel RM, Pryor E
Long-term outcomes and life-impacts of necrotizing enterocolitis: a survey of survivors and parents.
Necrotizing enterocolitis (NEC) is a severe gastrointestinal condition predominantly afflicting preterm infants. Despite its association with unfavorable outcomes within the first two years of life, there is a scarcity of research examining the long-term consequences and life quality in children beyond this age. The purpose of the study was to carry out a survey to assess the enduring repercussions of NEC on physical and psychological well-being, social interactions, and overall life satisfaction as reported by adult survivors and parents of children who overcame NEC. The study found that both survivors and parents of children who have endured NEC encounter persistent challenges affecting their physical and emotional health, social encounters, and overall life contentment.
AHRQ-funded; HS026383
Citation: Canvasser J, Patel RM, Pryor E .
Long-term outcomes and life-impacts of necrotizing enterocolitis: a survey of survivors and parents.
Semin Perinatol 2023 Feb;47(1):151696. doi: 10.1016/j.semperi.2022.151696.
Keywords: Newborns/Infants, Children/Adolescents, Digestive Disease and Health, Outcomes, Quality of Life
Bogetz JF, Revette A, DeCourcey D
Bereaved parent perspectives on the benefits and burdens of technology assistance among children with complex chronic conditions.
The objective of this study was to understand bereaved parent perspectives on technology assistance among children with complex chronic conditions (CCCs). Researchers analyzed data from the cross-sectional Survey of Caring for Children with CCCs. Parents described both benefits and burdens of technology, with two emergent subthemes related to goals of care: technology was necessary to give time for life extension and/or to say goodbye, and technology greatly impacted the child's quality of life and symptoms. The second theme to emergence was complications and regret. The researchers concluded that it is important to understand parents' most goals when supporting decisions about technology assistance for children with CCCs.
AHRQ-funded; HS022986.
Citation: Bogetz JF, Revette A, DeCourcey D .
Bereaved parent perspectives on the benefits and burdens of technology assistance among children with complex chronic conditions.
J Palliat Med 2022 Feb; 25(2):250-58. doi: 10.1089/jpm.2021.0221..
Keywords: Children/Adolescents, Caregiving, Quality of Life, Chronic Conditions
Holding EZ, Turner EM, Hall TA
The association between functional status and health-related quality of life following discharge from the pediatric intensive care unit.
This study investigated the association between new functional impairments, measured by the Functional Status Scale (FSS), and health-related quality of life (HRQOL) in pediatric patients with acquired brain injury (ABI) after critical care. This secondary analysis was conducted using children aged 2 months to 18 years with ABI. Complete data were analyzed for 195 children, including 127 with traumatic brain injury. New functional impairment was common with 32 patients experiencing FSS ≥ 3, 50 (26%) patients with FSS increases of 1-2 points, and 113 (58%) patients with no change from prehospital baseline. The majority of children (63%) demonstrated HRQOL ratings ≥ 1 standard deviation below healthy age-based standards.
AHRQ-funded; HS022981.
Citation: Holding EZ, Turner EM, Hall TA .
The association between functional status and health-related quality of life following discharge from the pediatric intensive care unit.
Neurocrit Care 2021 Oct;35(2):347-57. doi: 10.1007/s12028-021-01271-8..
Keywords: Children/Adolescents, Quality of Life, Brain Injury, Intensive Care Unit (ICU)
Bevans KB, Moon J, Becker BD
Development of patient-reported outcome measures of children's oral health aesthetics.
The authors sought to develop and evaluate the psychometric properties of child- and parent-proxy measures of oral health aesthetics. Items that describe children's perceptions of their oral attractiveness and its impact on social, emotional, and behavioral functioning were developed based on a systematic review of existing measures, clinician feedback, and child semi-structured interviews. The authors found that the oral health aesthetic item banks and short forms provided precise and valid assessments of children's satisfaction with their oral appearance and may be useful for targeting and evaluating pediatric dental and orthodontic care in clinical practice and research settings.
AHRQ-funded; HS020508.
Citation: Bevans KB, Moon J, Becker BD .
Development of patient-reported outcome measures of children's oral health aesthetics.
Community Dent Oral Epidemiol 2020 Oct;48(5):423-32. doi: 10.1111/cdoe.12555..
Keywords: Children/Adolescents, Dental and Oral Health, Quality of Life
Luther M, Poppert Cordts KM, Williams CN
Sleep disturbances after pediatric traumatic brain injury: a systematic review of prevalence, risk factors, and association with recovery.
This is a systematic review to quantify sleep wake disturbances (SWD) after pediatric traumatic brain injury (TBI). These SWD can place children at risk for worse outcomes since sleep is needed for brain development and healing after injury. They also evaluated interventions for SWD and the association between SWD and other post-traumatic outcomes. Literature was searched from 1999-2019 evaluating sleep or fatigue in children hospitalized for TBI. Two independent reviewers assessed quality of the studies using the Newcastle-Ottowa Score for observational studies. Out of 966 identified articles, 126 full text articles were reviewed and 24 studies were included. Studies showed at least 20% of children with TBI had some degree of SWD including trouble falling or staying asleep, fatigue, daytime fatigue, and nightmares. SWD was negatively correlated with cognitive, behavioral, and quality of life outcomes. There was moderate-high risk of bias for all studies due to small sample size and lack of validated or objective SWD measures.
AHRQ-funded; HS022981.
Citation: Luther M, Poppert Cordts KM, Williams CN .
Sleep disturbances after pediatric traumatic brain injury: a systematic review of prevalence, risk factors, and association with recovery.
Sleep 2020 Oct;43(10):zsaa083. doi: 10.1093/sleep/zsaa083..
Keywords: Children/Adolescents, Sleep Problems, Brain Injury, Neurological Disorders, Trauma, Risk, Patient-Centered Outcomes Research, Outcomes, Quality of Life, Evidence-Based Practice
Poppert Cordts KM, Hall TA, Hartman ME
Sleep measure validation in a pediatric neurocritical care acquired brain injury population.
Lingering morbidities including physical, cognitive, emotional, and psychosocial sequelae, termed the Post-Intensive Care Syndrome, persist years after pediatric neurocritical care (PNCC) hospitalization. Sleep disturbances impact other Post-Intensive Care Syndrome domains and are under-evaluated to date due to a lack of appropriate measurement tools. The present study evaluated the validity of the Sleep Disturbance Scale for Children (SDSC) to address the growing need for assessing sleep problems after PNCC.
AHRQ-funded; HS022981.
Citation: Poppert Cordts KM, Hall TA, Hartman ME .
Sleep measure validation in a pediatric neurocritical care acquired brain injury population.
Neurocrit Care 2020 Aug;33(1):196-206. doi: 10.1007/s12028-019-00883-5..
Keywords: Children/Adolescents, Sleep Problems, Neurological Disorders, Intensive Care Unit (ICU), Hospitalization, Quality of Life
Desai AD, Zhou C, Haaland W
Social disadvantage, access to care, and disparities in physical functioning among children hospitalized with respiratory illness.
This study examined associations between social disadvantage, access to care, and disparities in physical functioning among children hospitalized with acute respiratory illness. The study cohort included children ages 8-16 years and/or caregivers of children 2 weeks to 16 years admitted to five tertiary care children’s hospitals for three common respiratory illnesses from July 2014 through June 2016. Surveys were completed within 2 to 8 weeks after discharge. The survey assessed social disadvantage, difficulty/delays accessing care, and baseline and follow-up health-related quality of life (HRQoL), and physical functioning using the Pediatric Quality of Life Inventory (PedsQL). A total of 1,325 patients and/or their caregivers completed both PedsQL surveys. Adjusted mean baseline PedsQL scores were significantly lower for patients with social disadvantage (minority race/ethnicity, limited English proficiency, low education, and low income), than for patients with none. There were also disadvantage markers or difficulty/delays accessing care which were associated with lower physical functioning. However, these differences were reduced after hospital discharge.
AHRQ-funded; HS024299.
Citation: Desai AD, Zhou C, Haaland W .
Social disadvantage, access to care, and disparities in physical functioning among children hospitalized with respiratory illness.
J Hosp Med 2020 Apr;15(4):211-18. doi: 10.12788/jhm.3359..
Keywords: Children/Adolescents, Respiratory Conditions, Hospitalization, Access to Care, Disparities, Vulnerable Populations, Quality of Life
Cheng BT, Smith SS, Fishbein AB
Functional burden and limitations in children with chronic sinusitis.
The objective of this study was to use a validated pediatric quality of life (QOL) tool to quantify the impact of pediatric chronic rhinosinusitis (CRS) in a representative epidemiological sample. Findings showed that pediatric CRS was associated with substantial QOL burden across multiple psychosocial and cognitive domains and that CRS children with lower family income and comorbid asthma, anxiety, and depression had higher Columbia Impairment Scale scores associated with even greater functional impairment. These findings suggested that pediatric CRS might be a population requiring greater attention and screening for mental health symptoms.
AHRQ-funded; HS023011.
Citation: Cheng BT, Smith SS, Fishbein AB .
Functional burden and limitations in children with chronic sinusitis.
Pediatr Allergy Immunol 2020 Jan;31(1):103-05. doi: 10.1111/pai.13121..
Keywords: Medical Expenditure Panel Survey (MEPS), Children/Adolescents, Quality of Life, Healthcare Costs, Respiratory Conditions, Chronic Conditions
Volerman A, Fierstein J, Boon K
Factors associated with effective inhaler technique among children with moderate to severe asthma.
Guidelines recommend that children and families receive education about and demonstration of effective inhaler technique as part of asthma self-management education. For youth, improved inhaler technique is associated with better quality of life and decreased health care use, yet technique remains suboptimal. To understand potential reasons for differences in inhaler skills, this study examined individual- and health care-level factors associated with effective inhaler technique among children.
AHRQ-funded; HS026385.
Citation: Volerman A, Fierstein J, Boon K .
Factors associated with effective inhaler technique among children with moderate to severe asthma.
Ann Allergy Asthma Immunol 2019 Nov;123(5):511-12.e1. doi: 10.1016/j.anai.2019.08.017.
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Keywords: Children/Adolescents, Asthma, Chronic Conditions, Patient Self-Management, Education: Patient and Caregiver, Medication, Quality of Life
Fauer AJ, Hoodin F, Lalonde E
Impact of a health information technology tool addressing information needs of caregivers of adult and pediatric hematopoietic stem cell transplantation patients.
The authors of this article developed BMT Roadmap, a health information technology application on a tablet, to address caregivers' unmet needs with patient-specific information from the electronic health record. They conducted a preliminary feasibility study of BMT Roadmap in caregivers of adult and pediatric hematopoietic stem cell transplantation (HSCT) patients and registered the study on ClinicalTrials.gov. They found that BMT Roadmap was a feasible intervention to implement in HSCT caregivers, associated with increased activation and decreased burden; quality of life, however, was lowered across hospitalization. The authors conclude that their findings support the need for further development of caregiver-specific self-directed resources and provision for both inpatient and outpatient across the HSCT trajectory.
AHRQ-funded; HS023613.
Citation: Fauer AJ, Hoodin F, Lalonde E .
Impact of a health information technology tool addressing information needs of caregivers of adult and pediatric hematopoietic stem cell transplantation patients.
Support Care Cancer 2019 Jun;27(6):2103-12. doi: 10.1007/s00520-018-4450-4..
Keywords: Cancer, Caregiving, Children/Adolescents, Electronic Health Records (EHRs), Health Information Technology (HIT), Quality of Life, Transplantation
Bauer NS, Ofner S, Moore C
Assessment of the effects of pediatric attention deficit hyperactivity disorder on family stress and well-being: development of the IMPACT 1.0 scale.
This paper describes the IMPACT (Impact Measure of Parenting-Related ADHD Challenges and Treatment) 1.0 Scale which was codeveloped with input from parent advisors and administered to 79 parents of children with ADHD. It is a brief measure to assess ADHD impacts on family in the context of everyday family life. Exploratory factor analysis, correlations with validated instruments, and test-retest reliability were examined in the study.
AHRQ-funded; HS022434.
Citation: Bauer NS, Ofner S, Moore C .
Assessment of the effects of pediatric attention deficit hyperactivity disorder on family stress and well-being: development of the IMPACT 1.0 scale.
Glob Pediatr Health 2019 Mar 15;6:2333794x19835645. doi: 10.1177/2333794x19835645..
Keywords: Children/Adolescents, Behavioral Health, Family Health and History, Patient-Centered Outcomes Research, Quality of Life
Badawy SM, Thompson AA, Liem RI
Beliefs about hydroxyurea in youth with sickle cell disease.
The objectives of this study were to assess beliefs about hydroxyurea using the Beliefs about Medicines Questionnaire (BMQ), and to examine the relationship of patients' beliefs to their hydroxyurea adherence and health-related quality of life (HRQOL). The investigators found that beliefs about hydroxyurea correlated with HRQOL scores and adherence levels. The authors suggest that addressing patients' concerns about hydroxyurea and medications overall as well as routine assessment of adherence and beliefs could help to overcome adherence barriers.
AHRQ-funded; HS023011.
Citation: Badawy SM, Thompson AA, Liem RI .
Beliefs about hydroxyurea in youth with sickle cell disease.
Hematol Oncol Stem Cell Ther 2018 Sep;11(3):142-48. doi: 10.1016/j.hemonc.2018.01.001..
Keywords: Children/Adolescents, Medication, Patient Adherence/Compliance, Quality of Life, Sickle Cell Disease
Badawy SM, Barrera L, Cai S
Association between participants' characteristics, patient-reported outcomes, and clinical outcomes in youth with sickle cell disease.
Researchers studied the effects of sickle disease (SCD) on the quality of life (QOL) on youths with the disease. Participant characteristics, chronic pain, and medication adherence were measured against clinical outcomes. Older and female participants had worse QOL than males overall.
AHRQ-funded; HS023011.
Citation: Badawy SM, Barrera L, Cai S .
Association between participants' characteristics, patient-reported outcomes, and clinical outcomes in youth with sickle cell disease.
Biomed Res Int 2018 Jul 18;2018:8296139. doi: 10.1155/2018/8296139..
Keywords: Children/Adolescents, Outcomes, Patient-Centered Outcomes Research, Quality of Life, Sickle Cell Disease
Taylor YJ, Tapp H, Shade LE
Impact of shared decision making on asthma quality of life and asthma control among children.
This study evaluated the impact of shared decision making (SDM) on quality of life and symptom control in children with asthma. The investigators found that implementation of SDM within clinical practices using a standardized toolkit was associated with improved asthma quality of life and asthma control for low-income children with asthma when compared to usual care with decision support.
AHRQ-funded; HS019946.
Citation: Taylor YJ, Tapp H, Shade LE .
Impact of shared decision making on asthma quality of life and asthma control among children.
J Asthma 2018 Jun;55(6):675-83. doi: 10.1080/02770903.2017.1362423..
Keywords: Children/Adolescents, Asthma, Respiratory Conditions, Chronic Conditions, Shared Decision Making, Quality of Life
Dickerson JF, Feeny DH, Clarke GN
Evidence on the longitudinal construct validity of major generic and utility measures of health-related quality of life in teens with depression.
This study examined the longitudinal construct validity in the assessment of changes in depressive symptoms of widely used utility and generic health-related quality of life (HRQL) instruments in teens. Its findings support the longitudinal construct validity of included HRQL instruments for the assessment of change in depression outcomes in teens.
AHRQ-funded; HS017720.
Citation: Dickerson JF, Feeny DH, Clarke GN .
Evidence on the longitudinal construct validity of major generic and utility measures of health-related quality of life in teens with depression.
Qual Life Res 2018 Feb;27(2):447-54. doi: 10.1007/s11136-017-1728-9.
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Keywords: Children/Adolescents, Depression, Genetics, Quality of Life
Burgette JM, Preisser JS, Weinberger M
Early head start, pediatric dental use, and oral health-related quality of life.
The objective of the study was to examine the mediating effect of child dental use on the effectiveness of North Carolina Early Head Start (EHS) in improving oral health-related quality of life (OHRQoL). It concluded that EHS increases child dental use, which worsens family OHRQoL. However, EHS is associated with improved OHRQoL overall.
AHRQ-funded; HS000032.
Citation: Burgette JM, Preisser JS, Weinberger M .
Early head start, pediatric dental use, and oral health-related quality of life.
JDR Clin Trans Res 2017 Oct;2(4):353-62. doi: 10.1177/2380084417709758.
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Keywords: Children/Adolescents, Dental and Oral Health, Quality of Life, Children/Adolescents
Burgette JM, Preisser JS, Weinberger M
Enrollment in early head start and oral health-related quality of life.
Researchers examined the effect of enrollment in North Carolina Early Head Start (EHS) - a federally funded early education program for children under three years of age and their families - on oral health-related quality of life (OHRQoL). Their study is the first to demonstrate that families of young children enrolled in EHS report improved OHRQoL compared to their non-enrolled peers.
AHRQ-funded; HS000032.
Citation: Burgette JM, Preisser JS, Weinberger M .
Enrollment in early head start and oral health-related quality of life.
Qual Life Res 2017 Oct;26(10):2607-18. doi: 10.1007/s11136-017-1584-7.
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Keywords: Children/Adolescents, Dental and Oral Health, Quality of Life
Silverberg JI
Selected comorbidities of atopic dermatitis: atopy, neuropsychiatric, and musculoskeletal disorders.
Atopic dermatitis (AD) is a chronic pruritic inflammatory skin disease with substantial morbidity and quality of life impairment. This review summarizes recent developments in the atopic and neuropsychiatric comorbidities of AD. For example, it concludes that persons with AD appear to be at higher risk for multiple neuropsychiatric disorders, including depression, attention-deficit/hyperactivity disorder, speech disorders in childhood, headaches, and seizures.
AHRQ-funded; HS023011.
Citation: Silverberg JI .
Selected comorbidities of atopic dermatitis: atopy, neuropsychiatric, and musculoskeletal disorders.
Clin Dermatol 2017 Jul - Aug;35(4):360-66. doi: 10.1016/j.clindermatol.2017.03.008.
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Keywords: Skin Conditions, Chronic Conditions, Behavioral Health, Quality of Life, Children/Adolescents
DunnGalvin A, Koman E, Raver E
An examination of the food allergy quality of life questionnaire performance in a countrywide american sample of children: cross-cultural differences in age and impact in the United States and Europe.
The primary aim of the present study was to examine the performance of the Food Allergy Quality of Life Questionnaire - Parent Form (FAQLQ-PF) in a countrywide American sample of children with food allergy. The FAQLQ-PF has high convergent validity and discriminant validity, internal consistency was excellent. US health-related quality of life was worse than European health-related quality of life, as indicated by higher FAQLQ-PF scores in US samples.
AHRQ-funded; HS024599.
Citation: DunnGalvin A, Koman E, Raver E .
An examination of the food allergy quality of life questionnaire performance in a countrywide american sample of children: cross-cultural differences in age and impact in the United States and Europe.
J Allergy Clin Immunol Pract 2017 Mar - Apr;5(2):363-68.e2. doi: 10.1016/j.jaip.2016.09.049.
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Keywords: Children/Adolescents, Nutrition, Quality of Life