IMPROVING CONSENT VIA PATIENT SUPPORT GROUPS King Faisal Specialist Hospital & Research Center - Jeddah Yaser M Kattoah - Administrative Transplant Coordinator

Introduction The number of people with Chronic Kidney Disease (CKD) is increasing steadily in Saudi Arabia (KSA), with over 10,000 patients on dialysis and many waiting for a kidney transplant. In order to improve the quality of life for patients with CKD donor rates for transplant should be increased.Thus; informed consent for organ donation becomes a very important factor. Providing relevant information empowers, educates and enables people with CKD, renal transplant recipients, living organ donors and family members to become effective advocates on issues related to their health.

There is a significant challenge in KSA, with families that are reluctant to agree for cadaver or living unrelated donation due to the lack of education, Families personal views and social influence tend to interfere with obtaining consent although donation is religiously accepted in Islam (the religion of Saudi Arabia). Often a family member is willing to donate but the offer is rejected by the patient or other family members. Therefore, because of an extensive waiting time, due to lack of donor consent (living and cadaveric), many patients requiring transplants are willing to go outside KSA, where donors are more readily available, and consequences of the follow up may be significantly undesirable. There is a significant challenge in KSA, with families that are reluctant to agree for cadaver or living unrelated donation due to the lack of education, Families personal views and social influence tend to interfere with obtaining consent although donation is religiously accepted in Islam (the religion of Saudi Arabia). Often a family member is willing to donate but the offer is rejected by the patient or other family members. Therefore, because of an extensive waiting time, due to lack of donor consent (living and cadaveric), many patients requiring transplants are willing to go outside KSA, where donors are more readily available, and consequences of the follow up may be significantly undesirable.

A support group aimed at educating patients and their families was established. The goal of this group was to increase living related donation rates by education. Previous donors and their families were invited to discuss their experiences and to allow potential donors and their families an opportunity to learn from those who had already been through the process. A support group aimed at educating patients and their families was established. The goal of this group was to increase living related donation rates by education. Previous donors and their families were invited to discuss their experiences and to allow potential donors and their families an opportunity to learn from those who had already been through the process.

Outcome of support group Families started to understand why living related transplantation was a good option; there was an increase in the number of consents for living related donation, and a reported increase in emotional attachment between donor and recipients.

Objectives of the support group 1. To educate potential living donors and families regarding The benefits and risks of donation. The benefits and risks of donation. 2. To provide explanation regarding the need for transplant, The risk and the benefits and follow-up care for all parties After transplantation The risk and the benefits and follow-up care for all parties After transplantation 3. To increase the number of living donations by increasing The awareness and understanding of the public. The awareness and understanding of the public. 4. To obtain informed consent for living donation in order to Facilitate the procedure for transplants Facilitate the procedure for transplants

Team Patient, Physician, Psychologist Nurses, Allied Health Worker, Pharmacy, Dietary, Social Worker, Transplant Coordinator, Secretarial Support

Process Advertising, Facilities, Culture, Timing, group discussions, Speakers, videos, pamphlets and sponsorship

Conclusion Donation support groups are important for both patients and family’s previous donors and their families are very useful sources of information for both the patients and potential living donors. Increased awareness of the subject of organ transplantation was observed in the well educated groups. Many of these patients and families adopted an unofficial role as advocates for transplantation among their peers. An enhanced emotional relationship between the patient and the donor was noted to be an important additional benefit of Donation Support Group. Donation support groups will be successful if you prepare them well.

The question is, if this happens to you, and you need any organ transplant as result of disease, are you going to be grateful to the donor who saves your life or another patient’s life?? In this case, are you willing to get an organ from a donor? If your answer is yes than you have to remember (do unto others as you would others to do unto you).