National Healthcare Quality and Disparities Report
Latest available findings on quality of and access to health care
Data
- Data Infographics
- Data Visualizations
- Data Tools
- Data Innovations
- All-Payer Claims Database
- Healthcare Cost and Utilization Project (HCUP)
- Medical Expenditure Panel Survey (MEPS)
- AHRQ Quality Indicator Tools for Data Analytics
- State Snapshots
- United States Health Information Knowledgebase (USHIK)
- Data Sources Available from AHRQ
Search All Research Studies
AHRQ Research Studies Date
Topics
- Cardiovascular Conditions (1)
- Children/Adolescents (1)
- Chronic Conditions (1)
- Communication (1)
- Education: Patient and Caregiver (2)
- Evidence-Based Practice (1)
- Health Information Technology (HIT) (1)
- Heart Disease and Health (1)
- Kidney Disease and Health (2)
- Patient-Centered Healthcare (1)
- Patient-Centered Outcomes Research (1)
- Registries (1)
- Risk (1)
- (-) Shared Decision Making (7)
- Sickle Cell Disease (1)
- Surgery (1)
- (-) Transplantation (7)
AHRQ Research Studies
Sign up: AHRQ Research Studies Email updates
Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
Results
1 to 7 of 7 Research Studies DisplayedChu S, Bruin MJ, McKinney WT
Design of a patient-centered decision support tool when selecting an organ transplant center.
Patients in the US in need of a life-saving organ transplant must complete a long process of medical decisions, and a first step is to identify a transplant center to complete an evaluation. This study described a patient-centered process of testing and refinement of a new website (www.transplantcentersearch.org) that was developed to provide data to patients who are seeking a transplant center.
AHRQ-funded; HS026379; HS024527.
Citation: Chu S, Bruin MJ, McKinney WT .
Design of a patient-centered decision support tool when selecting an organ transplant center.
PLoS One 2021 May 17;16(5):e0251102. doi: 10.1371/journal.pone.0251102..
Keywords: Transplantation, Patient-Centered Healthcare, Shared Decision Making, Health Information Technology (HIT)
Schaffhausen CR, Bruin MJ, Chu S
Designing a liver transplant patient and family decision support tool for organ offer decisions.
For liver transplant candidates on the waiting list, deciding to accept a donor organ with known or potential risk factors can be stressful and can lead to declined offers. Current education for patients and family often takes place during transplant evaluations and can be overwhelming and result in low retention and poor understanding of donor quality. In this study, the investigators sought to understand provider experiences when counseling patients about donor risks and donor offers.
AHRQ-funded; HS026379; HS024527.
Citation: Schaffhausen CR, Bruin MJ, Chu S .
Designing a liver transplant patient and family decision support tool for organ offer decisions.
Transplant Direct 2021 May;7(5):e695. doi: 10.1097/txd.0000000000001140..
Keywords: Transplantation, Shared Decision Making, Education: Patient and Caregiver
Schulz GL, Kelly KP, Holtmann M
Navigating decisional conflict as a family when facing the decision of stem cell transplant for a child or adolescent with sickle cell disease.
Patients with sickle cell disease (SCD) face unpredictable disease, with stem cell transplant being a curative treatment option with risks. The aim of this study was to describe the level and source of decisional conflict in families of children/adolescents with SCD facing a transplant decision. The investigators concluded that varying levels and sources of decisional conflict existed in pediatric patients with SCD and their families considering transplant.
AHRQ-funded; HS022140.
Citation: Schulz GL, Kelly KP, Holtmann M .
Navigating decisional conflict as a family when facing the decision of stem cell transplant for a child or adolescent with sickle cell disease.
Patient Educ Couns 2021 May;104(5):1086-93. doi: 10.1016/j.pec.2020.10.011..
Keywords: Children/Adolescents, Sickle Cell Disease, Chronic Conditions, Transplantation, Shared Decision Making
McKinney WT, Schaffhausen CR, Schladt D
Designing a patient-specific search of transplant program performance and outcomes: feedback from heart transplant candidates and recipients.
The Scientific Registry of Transplant Recipients provides transplant program-specific information, but it is unclear what patients and stakeholders need to know. Acceptance criteria for the candidate waitlist and donor organs vary by program and region, but there is no means to search for programs by the clinical profiles of recipients and donors. The authors examined variability in program-specific characteristics that could influence access to transplantation.
AHRQ-funded; HS026379; HS024527.
Citation: McKinney WT, Schaffhausen CR, Schladt D .
Designing a patient-specific search of transplant program performance and outcomes: feedback from heart transplant candidates and recipients.
Clin Transplant 2021 Feb;35(2):e14183. doi: 10.1111/ctr.14183..
Keywords: Transplantation, Surgery, Heart Disease and Health, Cardiovascular Conditions, Registries, Patient-Centered Outcomes Research, Evidence-Based Practice, Shared Decision Making
Almasri J, Tello M, Benkhadra R
A systematic review for variables to be collected in a transplant database for improving risk prediction.
This study is a systematic review that was commissioned to identify new variables associated with transplant outcomes that are not currently collected by the Organ Procurement and Transplantation Network. They identified 81 unique studies including almost 1.2 million patients with median follow-up of 36 months posttransplant. A total of 108 unique risk factors were reported with most (104) recipient related and only 4 donor related. Most risk factors were small to moderate (ranging between 1.0 and 2.0). There were four relative association measures that were the strongest: 1) heart transplant recipients with a previous Fontan operation (8.6); 2) kidney transplant recipients with sickle cell nephropathy as primary cause of end-stage renal disease (2.8); 3) liver transplant recipients with serum ferritin >500 microg/L (14.3); and 4) lung transplant recipients with Burkholderia cepacia complex infection for 1 year or less (63.). These four risk factors were considered candidates for collection in databases and registries.
AHRQ-funded; HS024527.
Citation: Almasri J, Tello M, Benkhadra R .
A systematic review for variables to be collected in a transplant database for improving risk prediction.
Transplantation 2019 Dec;103(12):2591-601. doi: 10.1097/tp.0000000000002652..
Keywords: Transplantation, Risk, Shared Decision Making
Kilambi V, Bui K, Hazen GB
Evaluation of accepting kidneys of varying quality for transplantation or expedited placement with decision trees.
This article introduces a decision-tree methodology that analyzes a patient's dilemma: to accept a kidney offer now or reject it. The methodology calculates the survival benefit of accepting a kidney given a certain quality now and the survival benefit of rejecting it. The decision-tree tool presented could aid personalized transplant decision-making in the future by providing patients with calculated, individualized survival benefits between accepting and rejecting a kidney offer.
AHRQ-funded; HS024840.
Citation: Kilambi V, Bui K, Hazen GB .
Evaluation of accepting kidneys of varying quality for transplantation or expedited placement with decision trees.
Transplantation 2019 May;103(5):980-89. doi: 10.1097/tp.0000000000002585..
Keywords: Transplantation, Kidney Disease and Health, Shared Decision Making
Novogrodsky E, Yaghoubian A, Connor SE
The role of media in non-directed (altruistic) living kidney donation.
This study sought to characterize how non-directed living kidney donors use media and informational resources over the course of their kidney donation journey. The investigators conducted semi-structured interviews with non-directed donors (NDDs) who initiated kidney transplant chains. The investigators concluded that media and informational resources play an important role in the process of donation for NDDs, including inspiring interest in donation through personal narratives.
AHRQ-funded; HS000029.
Citation: Novogrodsky E, Yaghoubian A, Connor SE .
The role of media in non-directed (altruistic) living kidney donation.
Health Commun 2019 Feb;34(2):259-67. doi: 10.1080/10410236.2017.1405480..
Keywords: Kidney Disease and Health, Transplantation, Shared Decision Making, Communication, Education: Patient and Caregiver