IMPROVING CONSENT VIA PATIENT IMPROVING CONSENT VIA PATIENT SUPPORT GROUPSSUPPORT GROUPS

King Faisal Specialist Hospital & King Faisal Specialist Hospital & Research Center - JeddahResearch Center - Jeddah

Yaser M Kattoah - Administrative Yaser M Kattoah - Administrative Transplant CoordinatorTransplant Coordinator

IntroductionIntroduction

The number of people with Chronic Kidney Disease (CKD) The number of people with Chronic Kidney Disease (CKD) is increasing steadily in Saudi Arabia (KSA), with over is increasing steadily in Saudi Arabia (KSA), with over 10,000 patients on dialysis and many waiting for a kidney 10,000 patients on dialysis and many waiting for a kidney transplant. In order to improve the quality of life for transplant. In order to improve the quality of life for patients with CKD donor rates for transplant should be patients with CKD donor rates for transplant should be increased .Thus; informed consent for organ donation increased .Thus; informed consent for organ donation becomes a very important factorbecomes a very important factor. .

Providing relevant information empowers, educates and Providing relevant information empowers, educates and enables people with CKD, renal transplant recipients, enables people with CKD, renal transplant recipients, living organ donors and family members to become living organ donors and family members to become effective advocates on issues related to their healtheffective advocates on issues related to their health. .

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

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

Outcome of support groupOutcome of support group

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

Objectives of the support groupObjectives of the support group

1.1. To educate potential living donors and families regarding To educate potential living donors and families regarding The benefits and risks of donationThe benefits and risks of donation. . 2.2. To provide explanation regarding the need for transplant, To provide explanation regarding the need for transplant, The risk and the benefits and follow-up care for all The risk and the benefits and follow-up care for all

partiesparties After transplantationAfter transplantation3.3. To increase the number of living donations by increasing To increase the number of living donations by increasing The awareness and understanding of the publicThe awareness and understanding of the public. . 4.4. To obtain informed consent for living donation in order to To obtain informed consent for living donation in order to Facilitate the procedure for transplantsFacilitate the procedure for transplants

TeamTeam

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

ProcessProcess

Advertising, Facilities, Culture, Timing, group discussions,Advertising, Facilities, Culture, Timing, group discussions,

Speakers, videos, pamphlets and sponsorship Speakers, videos, pamphlets and sponsorship

ConclusionConclusionDonation support groups are important for both patients and Donation support groups are important for both patients and

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

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