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Search All Research Studies
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- Cancer (2)
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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 9 of 9 Research Studies DisplayedRichardson 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
Kukulka K, Washington KT, Govindarajan R
Stakeholder perspectives on the biopsychosocial and spiritual realities of living with ALS: implications for palliative care teams.
The purpose of this study was to generate a rich description of the realities of living with amyotrophic lateral sclerosis (ALS), equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers. Study findings illustrated the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The investigators concluded that the complex biopsychosocial needs experienced by patients and family caregivers suggested numerous opportunities for meaningful palliative care involvement.
AHRQ-funded; HS022140.
Citation: Kukulka K, Washington KT, Govindarajan R .
Stakeholder perspectives on the biopsychosocial and spiritual realities of living with ALS: implications for palliative care teams.
Am J Hosp Palliat Care 2019 Oct;36(10):851-57. doi: 10.1177/1049909119834493..
Keywords: Palliative Care, Patient-Centered Outcomes Research, Neurological Disorders, Patient-Centered Healthcare, Patient and Family Engagement, Caregiving
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, Decision Making, Education: Patient and Caregiver, Medication, Patient-Centered Healthcare, Patient-Centered Outcomes Research, Sickle Cell Disease
Desai AD, Jacob-Files EA, Lowry SJ
Development of a caregiver-reported experience measure for pediatric hospital-to-home transitions.
The objective for this study was to develop and test a caregiver-reported experience measure for pediatric hospital-to-home transitions. An eight-item caregiver-reported experience measure to evaluate hospital-to-home transition outcomes in pediatric populations demonstrated acceptable content validity and psychometric properties.
AHRQ-funded; HS024299.
Citation: Desai AD, Jacob-Files EA, Lowry SJ .
Development of a caregiver-reported experience measure for pediatric hospital-to-home transitions.
Health Serv Res 2018 Aug;53 Suppl 1:3084-106. doi: 10.1111/1475-6773.12864..
Keywords: Caregiving, Children/Adolescents, Patient-Centered Outcomes Research, Quality Measures, Transitions of Care
Greenhawt M, Chan ES, Fleischer DM
Caregiver and expecting caregiver support for early peanut introduction guidelines.
This study investigates caregiver preferences for early peanut introduction (EPI) recommendations. The study concluded that among new and expecting caregivers, there is poor current willingness and questionable support for early allergenic solid food recommendations, including in-office allergy risk assessment before introduction. Willingness was better among expecting vs current caregivers.
AHRQ-funded; HS024599.
Citation: Greenhawt M, Chan ES, Fleischer DM .
Caregiver and expecting caregiver support for early peanut introduction guidelines.
Ann Allergy Asthma Immunol 2018 Jun;120(6):620-25. doi: 10.1016/j.anai.2018.03.001..
Keywords: Caregiving, Children/Adolescents, Guidelines, Newborns/Infants, Patient-Centered Outcomes Research
Krishnan S, Pappadis MR, Weller SC
Patient-centered mobility outcome preferences according to individuals with stroke and caregivers: a qualitative analysis.
This study explored the mobility-related preferences among stroke survivors and caregivers following post-acute rehabilitation at inpatient or skilled nursing facilities. Frequently mentioned outcome preferences by survivors were ability to walk (88 percent), move, and balance. They also wanted to acquire assistive devices to move independently. Caregivers were concerned with the survivor's safety and wanted them to drive (53 percent), prevent falls, have home accommodations, and transfer independently.
AHRQ-funded; HS022134; HS024711.
Citation: Krishnan S, Pappadis MR, Weller SC .
Patient-centered mobility outcome preferences according to individuals with stroke and caregivers: a qualitative analysis.
Disabil Rehabil 2018 Jun;40(12):1401-09. doi: 10.1080/09638288.2017.1297855.
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Keywords: Caregiving, Patient-Centered Outcomes Research, Patient Safety, Rehabilitation, Stroke
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
Roydhouse JK, Wilson IB
Systematic review of caregiver responses for patient health-related quality of life in adult cancer care.
The aim of this review is to help cancer researchers select a validated health-related quality of life tool if they anticipate using proxy-reported data. It concluded that the evidence base is strongest for the EORTC (disease-specific tools), COOP/WONCA (generic tools), and MQOL (end-of-life-specific tools).
AHRQ-funded; HS000011.
Citation: Roydhouse JK, Wilson IB .
Systematic review of caregiver responses for patient health-related quality of life in adult cancer care.
Qual Life Res 2017 Aug;26(8):1925-54. doi: 10.1007/s11136-017-1540-6.
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Keywords: Cancer, Caregiving, Patient-Centered Outcomes Research, Quality of Life
Kavalieratos D, Corbelli J, Zhang D
Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis.
This review sought to determine the association of palliative care with quality of life (QOL), symptom burden, survival, and other outcomes for people with life-limiting illness and for their caregivers. It concluded that the association between palliative care and QOL was attenuated but remained statistically significant whereas the association with symptom burden was not statistically significant . There was no association between palliative care and survival.
AHRQ-funded; HS022989.
Citation: Kavalieratos D, Corbelli J, Zhang D .
Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis.
JAMA 2016 Nov 22;316(20):2104-14. doi: 10.1001/jama.2016.16840.
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Keywords: Caregiving, Palliative Care, Quality of Life, Patient-Centered Outcomes Research