National Healthcare Quality and Disparities Report
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Search All Research Studies
Topics
- Asthma (1)
- Care Coordination (2)
- (-) Caregiving (13)
- Children/Adolescents (8)
- (-) Chronic Conditions (13)
- COVID-19 (1)
- Cultural Competence (1)
- Dementia (2)
- Diabetes (1)
- Education: Patient and Caregiver (1)
- Elderly (1)
- Electronic Health Records (EHRs) (1)
- Family Health and History (1)
- Healthcare Costs (1)
- Healthcare Delivery (1)
- Health Information Technology (HIT) (3)
- Hospital Readmissions (1)
- Long-Term Care (1)
- Medication (2)
- Medication: Safety (1)
- Mortality (1)
- Neurological Disorders (1)
- Palliative Care (1)
- Patient-Centered Healthcare (1)
- Patient-Centered Outcomes Research (1)
- Patient and Family Engagement (1)
- Patient Experience (1)
- Patient Self-Management (1)
- Quality of Life (2)
- Racial and Ethnic Minorities (1)
- Shared Decision Making (1)
- Sickle Cell Disease (1)
- Telehealth (1)
- Transitions of Care (1)
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 13 of 13 Research Studies DisplayedJolliff A, Coller RJ, Kearney H
An mHealth design to promote medication safety in children with medical complexity.
This study describes an effort to design a health information technology tool to improve medication safety for children with medical complexity (CMC). The study engaged family caregivers, secondary caregivers, and clinicians who work with CMC in a co-design process to identify: 1) medication safety challenges experienced by CMC caregivers and, 2) design requirements for a mobile health application to improve medication safety for CMC in the home. Family caregivers, secondary caregivers, and clinicians from a children's hospital-based pediatric complex care program participated in virtual co-design sessions. During these sessions, the facilitator guided 16 co-designers in generating and converging upon medication safety challenges and design requirements. These sessions were recorded and reviewed after conclusion to confirm that all designer comments had been captured. An analysis yielded 11 challenges to medication safety and 11 corresponding design requirements that fit into three broader challenges: giving the right medication at the right time; communicating with others about medications; and accommodating complex medical routines.
AHRQ-funded; HS028409.
Citation: Jolliff A, Coller RJ, Kearney H .
An mHealth design to promote medication safety in children with medical complexity.
Appl Clin Inform 2024 Jan; 15(1):45-54. doi: 10.1055/a-2214-8000..
Keywords: Children/Adolescents, Medication: Safety, Medication, Health Information Technology (HIT), Chronic Conditions, Telehealth, Caregiving
Semere W, Makaroun LK, Beach S
Family caregivers navigating the health care system: evolving roles during the COVID-19 pandemic.
The purpose of this study was to explore changes in the ways family caregivers assisted family members with chronic illness and disability in addressing their health care needs during the COVID-19 pandemic. The researchers administered telephone and online surveys to family caregivers who were listed in a regional research registry, asking them what level of helping they provided during the pandemic compared to the level they were providing prior to the pandemic. The study found that of the 561caregivers that responded to the survey, 59% reported an increase in providing help with 1 or more heath care activities. The researchers advise that for caregivers assisting vulnerable patients to access care, support strategies should be considered by the health system and health care providers.
AHRQ-funded; HS027844.
Citation: Semere W, Makaroun LK, Beach S .
Family caregivers navigating the health care system: evolving roles during the COVID-19 pandemic.
Fam Syst Health 2022 Jun;40(2):268-73. doi: 10.1037/fsh0000688..
Keywords: Caregiving, COVID-19, Chronic Conditions
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
Armstrong MJ, Gamez N, Alliance S
Clinical care and unmet needs of individuals with dementia with Lewy bodies and caregivers: an interview study.
Investigators researched the clinical care preferences of individuals living with dementia and caregivers, particularly dementia with Lewy bodies (DLB). Twenty individuals with DLB and 25 caregivers were interviewed via a semistructured questionnaire. The investigators concluded that improving care for individuals with DLB and their families will require a multipronged strategy including education for non-specialist care providers, increasing specialty care access, improved clinical care services, research to support disease prognosis and treatment decisions, and local and national strategies for enhanced caregiver support.
Citation: Armstrong MJ, Gamez N, Alliance S .
Clinical care and unmet needs of individuals with dementia with Lewy bodies and caregivers: an interview study.
Alzheimer Dis Assoc Disord 2021 Oct-Dec;35(4):327-34. doi: 10.1097/wad.0000000000000459..
Keywords: Dementia, Caregiving, Chronic Conditions, Neurological Disorders, Patient Experience
Tremblay ES, Ruiz J, Dykeman B
Hispanic caregivers' experience of pediatric type 1 diabetes: a qualitative study.
It is widely recognized that Type 1 Diabetes (T1D) outcomes are worse among Hispanic children; however, little is published about the perspectives of these patients and their caregivers. The intent of this study was to characterize the lived experience of Hispanic caregivers of children with T1D, focusing on the role of language and culture and their perspectives on current medical care and alternative care models.
AHRQ-funded; HS000063.
Citation: Tremblay ES, Ruiz J, Dykeman B .
Hispanic caregivers' experience of pediatric type 1 diabetes: a qualitative study.
Pediatr Diabetes 2021 Jul 7;22(7):1040-50. doi: 10.1111/pedi.13247..
Keywords: Children/Adolescents, Diabetes, Caregiving, Chronic Conditions, Racial and Ethnic Minorities, Cultural Competence
Zmora R, Statz TL, Birkeland RW
Transitioning to long-term care: family caregiver experiences of dementia, communities, and counseling.
Previous analyses of interventions targeting relationships between family caregivers of people with Alzheimer's disease and related dementias and residential long-term care (RLTC) staff showed modest associations with caregiver outcomes. This analysis aimed to better understand interpersonal and contextual factors that influence caregiver-staff relationships and identify targets for future interventions to improve these relationships.
AHRQ-funded; HS022836.
Citation: Zmora R, Statz TL, Birkeland RW .
Transitioning to long-term care: family caregiver experiences of dementia, communities, and counseling.
J Aging Health 2021 Jan;33(1-2):133-46. doi: 10.1177/0898264320963588..
Keywords: Elderly, Caregiving, Dementia, Transitions of Care, Long-Term Care, Chronic Conditions
Desai AD, Wang G, Wignall J
User-centered design of a longitudinal care plan for children with medical complexity.
This study’s goal was to determine content priorities and design preferences for a longitudinal care plan (LCP) among caregivers and healthcare providers who care for children with complex medical conditions (CMC) in acute care settings. Thirty iterative one-on-one design sessions with 10 caregivers and 20 providers were conducted. There was high within-group variability in content preferences among caregivers compared to provider groups. The authors identified 6 design preferences: a familiar yet customizable layout, a problem-based organization schema, linked content between sections, a table layout for most sections, a balance between unstructured and structured data fields, and use of family-centered terminology.
AHRQ-funded; HS024299.
Citation: Desai AD, Wang G, Wignall J .
User-centered design of a longitudinal care plan for children with medical complexity.
J Am Med Inform Assoc 2020 Dec 9;27(12):1860-70. doi: 10.1093/jamia/ocaa193..
Keywords: Children/Adolescents, Chronic Conditions, Electronic Health Records (EHRs), Health Information Technology (HIT), Care Coordination, Caregiving
Bogetz JF, Revette A, Rosenberg AR
"I could never prepare for something like the death of my own child": parental perspectives on preparedness at end of life for children with complex chronic conditions.
This study’s goal was to elucidate aspects important to preparedness at end of life (EOL) among bereaved parents of children with complex chronic conditions (CCCs). Participants answered 21 open-response queries on communication, decision-making, and EOL experiences as part of the Survey of Caring for Children with CCCs. Findings showed that most bereaved parents of children with CCCs described feeling unprepared for their child's EOL, despite palliative care and advance care planning, suggesting preparedness is a nuanced concept beyond "readiness." Recommendations included more research to identify supportive elements among parents facing their child's EOL.
AHRQ-funded; HS022986.
Citation: Bogetz JF, Revette A, Rosenberg AR .
"I could never prepare for something like the death of my own child": parental perspectives on preparedness at end of life for children with complex chronic conditions.
J Pain Symptom Manage 2020 Dec;60(6):1154-62.e1. doi: 10.1016/j.jpainsymman.2020.06.035..
Keywords: Children/Adolescents, Caregiving, Mortality, Chronic Conditions, Palliative Care
Crosby LE, Walton A, Shook LM
Development of a hydroxyurea decision aid for parents of children with sickle cell anemia.
This study developed a decision aid for use of hydroxyurea for parents of children with sickle cell anemia. There are national evidence-based guidelines, but they do not offer strategies for implementation. A multicomponent decision aid was developed via a needs assessment, clinic observations and iterative feedback. The decision aid was considered useful by the 75 parents and 28 clinicians who participated in all phases of the study.
AHRQ-funded; HS021114.
Citation: Crosby LE, Walton A, Shook LM .
Development of a hydroxyurea decision aid for parents of children with sickle cell anemia.
J Pediatr Hematol Oncol 2019 Jan;41(1):56-63. doi: 10.1097/mph.0000000000001257..
Keywords: Caregiving, Children/Adolescents, Chronic Conditions, Shared Decision Making, Education: Patient and Caregiver, Medication, Patient-Centered Healthcare, Patient-Centered Outcomes Research, Sickle Cell Disease
Desai AD, Jacob-Files EA, Wignall J
Caregiver and health care provider perspectives on cloud-based shared care plans for children with medical complexity.
Shared care plans play an essential role in coordinating care across health care providers and settings for children with medical complexity (CMC). However, existing care plans often lack shared ownership, are out-of-date, and lack universal accessibility. In this study, the investigators aimed to establish requirements for shared care plans to meet the information needs of caregivers and providers and to mitigate current information barriers when caring for CMC.
AHRQ-funded; HS024299.
Citation: Desai AD, Jacob-Files EA, Wignall J .
Caregiver and health care provider perspectives on cloud-based shared care plans for children with medical complexity.
Hosp Pediatr 2018 Jul;8(7):394-403. doi: 10.1542/hpeds.2017-0242..
Keywords: Children/Adolescents, Caregiving, Chronic Conditions, Care Coordination, Healthcare Delivery
Ganapathy D, Acharya C, Lachar J
The patient buddy app can potentially prevent hepatic encephalopathy-related readmissions.
The researchers aimed to define the feasibility of using the Patient Buddy App and its impact on 30-day readmissions by engaging and educating cirrhotic inpatients and caregivers in a pilot study. In their proof-of-concept trial, the use of Patient Buddy is feasible in recently discharged patients with cirrhosis and their caregivers. Eight hepatic encephalopathy-related readmissions were potentially avoided after the use of the App.
AHRQ-funded; HS024004.
Citation: Ganapathy D, Acharya C, Lachar J .
The patient buddy app can potentially prevent hepatic encephalopathy-related readmissions.
Liver Int 2017 Dec;37(12):1843-51. doi: 10.1111/liv.13494.
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Keywords: Caregiving, Chronic Conditions, Health Information Technology (HIT), Patient and Family Engagement, Hospital Readmissions
duRivage N, Ross M, Mayne SL
Asthma Control Test.
In this study, the investigators compared results of a modified version of the Asthma Control Test using parent proxy report (PP-ACT) with results reported by children and parents using the validated Childhood-Asthma Control Test (C-ACT). ). The investigators indicate that that while the PP-ACT missed few children with uncontrolled asthma and may simplify reporting of asthma control in circumstances when child report is not feasible or creates barriers to survey receipt, limitations of proxy reporting should be considered.
AHRQ-funded; HS022689.
Citation: duRivage N, Ross M, Mayne SL .
Asthma Control Test.
Clin Pediatr 2017 Apr;56(4):341-47. doi: 10.1177/0009922816675013..
Keywords: Asthma, Caregiving, Children/Adolescents, Chronic Conditions, Patient Self-Management
Prosser LA, Lamarand K, Gebremariam A
Measuring family HRQoL spillover effects using direct health utility assessment.
The researchers evaluated the loss in health-related quality of life of having a family member with a chronic illness by condition and relationship type. They found that the effects of illness extend beyond the individual patient to include effects on caregivers of patients, parents of ill children, spouses, and other close family and household members. They recommended that cost-effectiveness analyses consider the inclusion of health-related quality of life spillover effects in addition to caregiving time costs incurred by family members of ill individuals.
AHRQ-funded; HS014010.
Citation: Prosser LA, Lamarand K, Gebremariam A .
Measuring family HRQoL spillover effects using direct health utility assessment.
Med Decis Making 2015 Jan;35(1):81-93. doi: 10.1177/0272989x14541328.
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Keywords: Caregiving, Chronic Conditions, Family Health and History, Healthcare Costs, Quality of Life