FOR IMMEDIATE RELEASE: October 2, 2019
Washington, D.C. – The American Association of Kidney Patients (AAKP), the oldest and largest fully independent kidney patient organization in the USA collaborated with CareDx; a leading precision medicine company focused on the discovery, development and commercialization of clinically differentiated, high-value healthcare solutions for transplant patients and caregivers; on a nationwide, informational survey of kidney transplant recipients that assessed their key concerns about monitoring kidney health post-transplant. The survey was conducted through the AAKP Center Patient Research and Education which has extensive capacities to target and engage kidney patients in scientific (IRB approved) and informational research.
AAKP President Richard Knight, a former dialysis patient and current, thirteen-year transplant recipient stated, “AAKP patient members welcome research efforts that inform national care discussions and educate policy-makers on the concerns that dominate patient-thinking. This survey revealed insights that are widely understood among patients, but will be eye-opening to non-patients and officials in posts that impact patient outcomes.”
A total of 170 adults (age 18 and over) who received a kidney transplant within the last ten years participated in an online survey which aimed to collect self-reported quantitative and qualitative insights to better understand their key concerns and overall health monitoring. Key insights from the study included:
- Fear of organ rejection is the #1 health concern reported among respondents who received a kidney transplant in the past ten years.
- More than three-quarters of respondents said their transplant either ‘meant everything to me,’
‘got my health back,’ or ‘saved my life.’
- 85% of respondents said they feel that regular check-ups with their doctor to monitor their transplanted organ is extremely important for their health.
- Nearly 79% reported they never miss a laboratory or follow-up appointment with their doctor
for monitoring their kidney function.
- 35% of respondents skip some of their immunosuppressant or transplant medications each month.
- Lack of health insurance and cost of medications was shown to be the leading barrier for
nearly half of respondents.
- Most respondents said they felt timeliness, precise information and minimally invasive procedures were extremely important in detecting or monitoring for rejection of their transplanted organ.
- More than two-thirds of respondents said having a regular blood test to give precise
and timely information about the health of their transplanted organ or potential rejection would make them feel they had either peace of mind and/or more confidence.
- 97% of kidney transplant patients say their transplant has made a positive change to their life.
Paul T. Conway, AAKP Chair of Policy & Global Affairs, a former dialysis patient and current, twenty-three year transplant recipient said, “The patient insights from this survey bolster the case for Congress to take decisive, bipartisan action on legislation to improve transplant outcomes and increase organ donations, particularly the extension of immunosuppressant drug coverage for kidney transplant recipients and passage of the Living Donor Protection Act of 2019. President Trump, through the extension of the Family Medical Leave Act for living organ donors and the Advancing American Kidney Health Executive Order, has acted boldly on behalf of kidney patients and AAKP hopes Congress can move beyond their differences and parallel a commitment in 2019.”
“At CareDx, we are glad to partner with independent patient-led organizations like AAKP to deeply understand the patient journey and experience so we can provide the best services for transplant recipients,” said Sasha King, Chief Marketing Officer at CareDx. “The information gathered from this survey clearly identified key areas where there is an increased need for education to inform and support patients as they manage the overall health of their transplanted organ from year one to beyond.”
About the Survey
An online Qualtrics survey of 170 adults (ages 18 and over) who received a kidney transplant within the last ten years was conducted March 7 – April 12, 2019 to assess the key concerns about the transplanted kidney and organ health monitoring post-kidney transplant. The survey was anonymous and no identifiable information was collected in association with responses. Individuals who completed the survey in-full were eligible to receive a $25 stipend in compensation for their time. This collaborative survey was conducted for information purposes only to inform insights for CareDx and AAKP and not as a systemic investigation whereas findings can be assumed to contribute to generalized knowledge.
The American Association of Kidney Patients (AAKP), celebrating its 50th Anniversary, is the oldest and largest fully independent kidney patient organization in the USA. In June of 2019, AAKP launched the Decade of Kidney™, an international effort to connect kidney patients to decision-makers in an effort to advocate for greater care choice, early detection, increased kidney transplantation, and research. Visit www.aakp.org.
CareDx, Inc., headquartered in Brisbane, California, is a leading precision medicine solutions company focused on the discovery, development and commercialization of clinically differentiated, high-value healthcare solutions for transplant patients and caregivers. CareDx offers products, testing services and digital healthcare solutions along the pre- and post-transplant patient journey, and is the leading provider of genomics-based information for transplant patients. Visit: www.CareDx.com.
Marketing & Communications Manager