Over 19 million Americans experience the devastating and costly effects of End Stage Renal Disease (ESRD) African Americans (AA) experience an incidence and prevalence rates 4-6 times greater than Caucasian Americans. Compounding this disparity is the low rate of AAs receiving living kidney donation, which provides the best survival and improvement in physical and psychological outcomes. Only 12% of the living kidney donors in 2008 were AAs. Inadequate donor candidate and caregiver information about donation, and a lack of trust in the healthcare team and transplant center are critical barriers which have been reported (Boulware et al. 2002;Sankar et al., 2006). The purpose of the proposed study is to pilot test randomized clinical trial (RCT) procedures to determine the association of a web-based information and support intervention on donor and informal caregiver psychological outcomes and trust in the transplant team and transplant center. The Living Donor Information Network for Caregiving (LINC) has three components: 1) information modules and links, 2) a discussion board with former kidney donors and their caregivers as mentors, and 3) online study instruments.
The specific aims of the study are to: 1) To determine the relationship between donor candidate and caregiver characteristics including race (black and white), previous internet use, and postoperative physical status to use of LINC (times and modules accessed and number of posts). 2) To determine associations in donor candidate and caregiver characteristics to psychological outcomes and trust in the healthcare team and transplant center among those with and without LINC. 3) To explore donor candidate and informal caregiver use of the LINC discussion board. This intervention will address the barrier of inadequate information from health professionals and may diminish concerns among AAs that information provided is inadequate due to racial biases. The long-term objective of LINC is to develop a model of online information and support to be implemented at transplant centers nationally to increase the number of AA living kidney donors. A mixed method approach will be used with quantitative analysis and qualitative description serving to enrich and provide context for quantitative findings. The LINC intervention will provide a model for transplant centers nationally in the use of web-based technology to provide information and support to living organ donors and their informal caregivers.
There is an urgent need to address End Stage Renal Disease (ESRD) in over 19 million Americans and particularly in African Americans who experience incidence and prevalence rates 4-6 times greater than Caucasian Americans but receive only 12% of the living kidney donations. The disparity in living donations among African Americans which is attributed to inadequate education and support of potential donors can be addressed using the internet at this time of rapidly increasing access to internet-based health information among African Americans (Pew, 2007). The Living Donor Information Network for Caregiving (LINC) is an innovative, web-based intervention that provides education and support to living kidney donors and their informal caregivers in a study population that is racially, ethnically, and culturally diverse.
| Taylor, Laura A; Bahreman, Nasreen; Hayat, Matthew J et al. (2012) Living kidney donors and their family caregivers: developing an evidence-based educational and social support website. Prog Transplant 22:119-28 |
