Increasing Equity in Live Donor Kidney Transplant through Effective Patient Provider Communication (Pending)
community-engaged, mixed-methods study employing a concurrent triangulation design to identify the specific communicative behaviors that result in live donor inquiries and evaluations, and actual LDKTs for Caucasian and Black patients, providing critical information to the design of an intervention to improve patient-provider communication about LDKT. Specifically, we will simultaneously quantitatively assess patient and provider factors with established and hypothesized associations with receipt of LDKTs, and qualitatively assess discrete elements of patient-provider communication occurring during transplant evaluation consultations for Caucasian and Black patients (Aim 1). Brief quantitative surveys administered before and after medical consultations held as part of the evaluation for transplant candidacy will capture providers’ (N=52) confidence and comfort discussing LDKT and patients’ satisfaction with the consultation, medical mistrust, health literacy, and LDKT knowledge, attitudes and readiness. We will also audiorecord transplant evaluation consultations for 60 Caucasian and 60 Black patients (N=120) across the two study sites – Saint Barnabas Medical Center (NJ) and Temple University Hospital (PA), and qualitatively assess the communication occurring during the consultations. We will use the findings to inform development of the content and format of a communication skills training for transplant providers and evaluate the direct and indirect effects of the training on patient-reported and LDKT process outcomes (Aims 2 & 3). [NIH R01DK134630; PI]
Patient Priorities in Lung Transplant: Quality of Life Outcomes to Inform Decision Making
The overall objective of the research is to identify and characterize the quality of life information that patients and their families require for informed decision making, and effectively communicate it them in a way that enhances decision making. [NIH K01; Mentor for Dr. Ilene Hollin; 02/01/2023-01/31/2028]
Building Capacity for PCOR Through Harm Reduction Organizations
This engagement project seeks to address health inequities among communities living with extreme poverty and substance use by building capacity for PCOR partnerships and CER within these communities and researchers via HR agencies. Project objectives are to: 1) Develop a collaborative of informed HR patient stakeholders to engage in PCOR and CER. 2) Educate researchers about PCOR and HR principles and issues faced by persons affected by drug use and poverty. 3) Facilitate interactions to promote on-going patient and researcher stakeholder discussion about research ideas, design concerns, and collaboration. [PCORI EACB-24470; Co-Project Lead with Dr. Amy Jessop – Prevention Point Philadelphia; 08/01/2022-07/31/2024]
Building Capacity for a PCOR Agenda on Latinx Disparities in CVD in COVID-19
This community engagement project will build capacity for patient centered outcomes research and clinical comparative effectiveness research (PCOR/CER) among Latinx populations residing in North Philadelphia. Specifically, this project will result in a prioritized set of research questions on the impact of COVID-19 on cardiovascular disease (CVD). A research advisory council – the Temple Research Advisory Council (TRAC) – will be convened to inform all aspects of the project, aid in the generation of Latinx specific research questions about COVID-19 and CVD, and form the basis of an informed, participatory stakeholder committee which may be included in future PCOR/CER research about COVID-19 and CVD. [PCORI EACB-24738; Co-Project Lead with Dr. Deborah Crabbe – TUHS; 07/01/2022-06/30/2024]
Genetic Testing (APOL1) Decisional Support for Potential Living Kidney Donors
Ensuring the safety of living kidney donors must remain of primary concern to both individual transplant programs and society, in general. The identification of the APOL1 allele and its impact on the development of kidney disease necessitates the development of additional safeguards for potential donors. This application proposes the formative work needed to develop a decisional support tool for African Americans considering genetic testing for the APOL1 allele in the context of living kidney donation. [NIH R01DK131016; PI; 10/01/21-9/30/25]
Military Veterans’ Knowledge, Attitudes and Interest in VCA Treatment for Disfiguring Service-related Injuries: Developing Shared Decision-Making for VCA
The overarching goal of this research is to understand the potential demand for VCA and to develop an evidence base to assist in the development of a shared decision making process that will help this vulnerable group of military veterans, along with their family caregivers, make authentic treatment decisions and optimize the results of VCA by assuring adherence with graft care. [DOD W81XWH1910278; MPI with Dr. Laura Siminoff; 07/01/19-06/30/22]
Understanding and Planning Donation Information Needs of Asian American Communities
This project will examine Asian Americans’ attitudes and beliefs about organ donation; identify realistic and culturally tailored interventions for increasing organ donation awareness and living and deceased donation rates among AAPs; and, develop and test a pilot intervention for future implementation on a national scale. [NIH R01DK114881; Co-Investigator; 07/01/2017-06/30/2022]
COMPLETED PROJECTS
Social Networks and Renal Transplant Education – NIH K23DK111943; Mentor for Dr. Avrum Gillespie; 09/01/2017-08/30/2022
Developing a Communication Approach to Discuss VCA Donation with Families Who Have Authorized Organ Donation – DOD W81XW1810698; MPI with Dr. Laura Siminoff; 09/15/18-09/14/22
Symposium on Obesity and Kidney Transplant AHRQ R13HS028377 and Veloxis Pharmaceuticals; PI; 09/30/21-09/29/22
Building Capacity for a PCOR Agenda on Racial and Sex-Specific Disparities in Cardiovascular Disease in COVID-19 – PCORI EAIN-00193; co-Project Lead with Dr. Deborah Crabbe; 07/01/20-06/30/21
Promotoras de Donación: Leveraging Community Health Workers to Increase Donor Registration of Older Hispanics – HRSA R39OT29878; PI; 09/01/16-08/30/21
‘Crashing’ onto Dialysis: Diagnosis Experiences, Coping Styles, and Treatment Decision-Making Preferences of Patients with Unexpected End-Stage Renal Disease –NIH F31DK117539; Primary Mentor for Dr. Megan Urbanski; 07/01/18-06/30/20
Communicating Effectively about Donation: An Effectiveness and Implementation Study – HRSA R39OT25728; Co-Investigator; 09/01/13-08/30/17
Sub-study on the Ethical, Legal, and Social Issues in Relation to the Genotype-Tissue Expression Project – NCI/NDRI S10-170; Co-Investigator; 09/01/14-12/30/15
Social and Behavioral Interventions to Increase Organ and Tissue Donation – HRSA R39OT24208; PI; 09/01/12-08/30/16
Increasing Communication about Live Donor Kidney Transplant: A Proof of Concept – AHRQ K01HS018113; PI; 07/01/10-04/31/16
Communicating about Choices in Transplantation: An Educational Intervention – AHRQ R03HS021312; PI; 03/01/12-02/28-14
A Randomized Trail of the ERRA Intervention to Increase Consent to Organ Donation – NIH R01DK081118; Co-Investigator; 01/01/09-12/30/14
Increasing Communication about Live Donor Kidney Transplant: A Proof of Concept – NIH LRP; PI; 2011-2013
The Genotype-Tissue Expression Project: ELSI Sub-study – NCI S10-R0; Co-Investigator; 10/01/10-4/30/13
A Randomized Trial of the ERRA Intervention to Increase Consent to Organ Donation – HRSA R39OT10581; Co-Investigator; 09/01/08-08/30/11