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Topics
- Cancer (2)
- Care Coordination (1)
- (-) Caregiving (11)
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- Chronic Conditions (1)
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- Newborns/Infants (1)
- Outcomes (1)
- Palliative Care (2)
- Patient-Centered Healthcare (2)
- Patient-Centered Outcomes Research (2)
- Patient and Family Engagement (2)
- (-) Patient Experience (11)
- Provider (1)
- Provider: Clinician (1)
- Quality Improvement (2)
- Quality of Care (2)
- Racial and Ethnic Minorities (1)
- Shared Decision Making (3)
- Sleep Problems (1)
- Surgery (1)
- Transitions of Care (2)
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 11 of 11 Research Studies DisplayedArmstrong 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
Richardson DR, Oakes AH, Crossnohere NL
Prioritizing the worries of AML patients: Quantifying patient experience using best-worst scaling.
Although patients with acute myeloid leukemia (AML) experience significant toxicities and poor outcomes, few studies have quantified patients' experience. In this study, a community-centered approach was used to develop an AML-specific best-worst scaling (BWS) instrument involving 13 items in four domains (psychological, physical, decision-making, treatment delivery) to quantify patient worry. A survey of patients and caregivers was conducted using the instrument. Data were analyzed using conditional logistic regression.
AHRQ-funded; HS000032.
Citation: Richardson DR, Oakes AH, Crossnohere NL .
Prioritizing the worries of AML patients: Quantifying patient experience using best-worst scaling.
Psychooncology 2021 Jul;30(7):1104-11. doi: 10.1002/pon.5652..
Keywords: Cancer, Patient Experience, Caregiving, Outcomes, Patient-Centered Outcomes Research
Quigley DD, McCleskey SG
Improving care experiences for patients and caregivers at end of life: a systematic review.
End-of-life care is increasing as the US population ages. Approaches to providing high-quality end-of-life care vary across setting, diseases, and populations. Several data collection tools measure patient and/or caregiver care experiences at end of life and can be used for quality improvement. Previous reviews examined palliative care improvements or available measures but none explicitly on improving care experiences. In this study, the researchers reviewed literature on improving patient and/or caregiver end-of-life care experiences.
AHRQ-funded; HS025920.
Citation: Quigley DD, McCleskey SG .
Improving care experiences for patients and caregivers at end of life: a systematic review.
Am J Hosp Palliat Care 2021 Jan;38(1):84-93. doi: 10.1177/1049909120931468..
Keywords: Palliative Care, Caregiving, Patient Experience, Quality Improvement, Quality of Care
Garrity BM, Singer SJ, Ward E
Parent perspectives on short-term recovery after spinal fusion surgery in children with neuromuscular scoliosis.
This paper evaluates concerns of parents and families of children who had undergone spinal fusion for neuromuscular scoliosis. Semistructured interviews were conducted with 18 families within 3 months after spinal fusion performed August 2017 to January 2019 at a children’s hospital. The interviews were recorded, transcribed, and coded line-by-line by 2 independent reviewers. Five themes emerged among families when reflecting on the postoperative recovery period: 1) communicating and making shared decisions regarding postoperative care in a patient- and family-centered manner, 2) setting hospital discharge goals and being ready for discharge, 3) planning for transportation from hospital to home, 4) acquiring supports for caregiving at home after discharge, and 5) anticipating a long recovery at home.
AHRQ-funded; HS024453.
Citation: Garrity BM, Singer SJ, Ward E .
Parent perspectives on short-term recovery after spinal fusion surgery in children with neuromuscular scoliosis.
J Patient Exp 2020 Dec;7(6):1369-77. doi: 10.1177/2374373520972570..
Keywords: Children/Adolescents, Surgery, Caregiving, Patient Experience
Amar-Dolan LG, Horn MH, O'Connell B B
"This is how hard it is". family experience of hospital-to-home transition with a tracheostomy.
This study explores the experience of family caregivers of children and young adults with a tracheostomy during the transition from hospital to home care. Researchers sought to identify the specific unmet needs of families to direct future interventions. Using semi-structured interviews, they found a need for family-centered discharge processes including coordination of care and teaching focused on emergency preparedness.
AHRQ-funded; HS000063.
Citation: Amar-Dolan LG, Horn MH, O'Connell B B .
"This is how hard it is". family experience of hospital-to-home transition with a tracheostomy.
Ann Am Thorac Soc 2020 Jul;17(7):860-68. doi: 10.1513/AnnalsATS.201910-780OC..
Keywords: Transitions of Care, Home Healthcare, Caregiving, Patient Experience, Care Coordination, Hospital Discharge, Hospitals, Children/Adolescents, Patient-Centered Healthcare
Neu M, Klawetter S, Greenfield JC
Mothers' experiences in the NICU before family-centered care and in NICUs where it is the standard of care.
Family-centered care (FCC) in neonatal intensive care units (NICUs) was initiated in 1992 to promote a respectful response to individual family needs and support parental participation in care and decision-making for their infants. Although benefits of FCC have been reported, changes in the maternal experience in the NICU are unknown. The purpose of this study was to compare mothers' experiences in NICUs where FCC is the standard of care and to compare these with the experiences of mothers 2 decades ago.
AHRQ-funded; HS026370.
Citation: Neu M, Klawetter S, Greenfield JC .
Mothers' experiences in the NICU before family-centered care and in NICUs where it is the standard of care.
Adv Neonatal Care 2020 Feb;20(1):68-79. doi: 10.1097/anc.0000000000000671.
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Keywords: Newborns/Infants, Patient-Centered Healthcare, Neonatal Intensive Care Unit (NICU), Intensive Care Unit (ICU), Caregiving, Shared Decision Making, Patient Experience, Patient and Family Engagement
Toomey SL, Elliott MN, Zaslavsky AM
Improving response rates and representation of hard-to-reach groups in family experience surveys.
This study examined the use of an audio-enabled tablet to survey parents of children discharged from 4 units of a children’s hospital. Normal mail survey response rates are very low, especially for black, Latino, and low-income respondents. This survey was done day of discharge at the hospital and there was a response rate of 71.1% via tablet versus 16.3% for mail only. The Child Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey was used. Tablet response rates were highest with fathers, those more likely to have a high school education or less, less likely to be white, and more likely to be publicly insured. The results are promising for future surveys using tablet administration.
AHRQ-funded; HS020513; HS025299.
Citation: Toomey SL, Elliott MN, Zaslavsky AM .
Improving response rates and representation of hard-to-reach groups in family experience surveys.
Acad Pediatr 2019 May - Jun;19(4):446-53. doi: 10.1016/j.acap.2018.07.007..
Keywords: Caregiving, Children/Adolescents, Consumer Assessment of Healthcare Providers and Systems (CAHPS), Health Information Technology (HIT), Hospitals, Low-Income, Patient Experience, Quality of Care, Quality Improvement, Racial and Ethnic Minorities
Jones CD, Jones J, Bowles KH
Patient, caregiver, and clinician perspectives on expectations for home healthcare after discharge: a qualitative case study.
The objective of this study was to evaluate and compare expectations for skilled home health care (HHC) from the patient, caregiver, and HHC perspectives after hospital discharge. Results showed that unclear expectations occurred when the patient and/or caregiver expectations were uncertain or misaligned with the services received; in most such cases, the patient and caregiver did not have prior experience with HHC. Recommendations to improve HHC transitions included actively engaging both patients and caregivers in the hospital and HHC settings to provide education about HHC services and assess and address additional care needs.
AHRQ-funded; HS024569.
Citation: Jones CD, Jones J, Bowles KH .
Patient, caregiver, and clinician perspectives on expectations for home healthcare after discharge: a qualitative case study.
J Hosp Med 2019 Feb;14(2):90-95. doi: 10.12788/jhm.3140..
Keywords: Caregiving, Health Services Research (HSR), Home Healthcare, Patient Experience, Provider, Provider: Clinician, Transitions of Care
Bardach NS, Burkhart Q, Richardson LP
Hospital-based quality measures for pediatric mental health care.
The objective of this study was to develop and test medical record-based measures used to assess quality of pediatric mental health care in the emergency department (ED) and inpatient settings. The investigators drafted an evidence-based set of pediatric mental health care quality measures for the ED and inpatient settings and used them to identify sex and race disparities and substantial hospital variation.
AHRQ-funded; HS020506.
Citation: Bardach NS, Burkhart Q, Richardson LP .
Hospital-based quality measures for pediatric mental health care.
Pediatrics 2018 Jun;141(6). doi: 10.1542/peds.2017-3554..
Keywords: Cancer, Caregiving, Children/Adolescents, Clinician-Patient Communication, Communication, Shared Decision Making, Diagnostic Safety and Quality, Patient Experience, Patient and Family Engagement
Aslakson R, Dy SM, Wilson RF
Patient and caregiver-reported assessment tools for palliative care: summary of the 2017 AHRQ Technical Brief.
This paper summarizes palliative care assessment tools completed by or with patients or caregivers, and identifies needs for future tool development and evaluation. It concluded that few to no tools address the spiritual, ethical, or cultural domains or patient-reported experience with end of life care. While some data exists on psychometric properties of tools, the responsiveness of different tools to change and/or comparisons between tools have not been evaluated.
AHRQ-funded; 290201500006I.
Citation: Aslakson R, Dy SM, Wilson RF .
Patient and caregiver-reported assessment tools for palliative care: summary of the 2017 AHRQ Technical Brief.
J Pain Symptom Manage 2017 Dec;54(6):961-72.e16. doi: 10.1016/j.jpainsymman.2017.04.022.
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Keywords: Caregiving, Evidence-Based Practice, Palliative Care, Patient Experience, Patient-Centered Outcomes Research
Boss EF, Links AR, Saxton R
Parent experience of care and decision making for children who snore.
The researchers identified factors associated with parental experience and decision making in pediatric sleep-disordered breathing (SDB) and adenotonsillectomy (AT) surgery. They found that while clinical factors were influential for decision making, interpersonal factors helped parents feel comfortable and influenced their overall experience
AHRQ-funded; HS022932.
Citation: Boss EF, Links AR, Saxton R .
Parent experience of care and decision making for children who snore.
JAMA Otolaryngol Head Neck Surg 2017 Mar;143(3):218-25. doi: 10.1001/jamaoto.2016.2400.
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Keywords: Children/Adolescents, Sleep Problems, Caregiving, Patient Experience, Shared Decision Making, Clinician-Patient Communication