My background I have been with UCSF for 30 years and it has all been - - PowerPoint PPT Presentation

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Ana Marie Torres, RN, MSN, ANP-BC Living Donor Nurse Practitioner UCSF Transplant Services

My background

I have been with UCSF for 30 years and it has all been with the Transplant Service. I started as a staff nurse and then went on to be a kidney transplant coordinator for about 18 years and then moved over to the Liver Transplant Service as a transplant coordinator. As of 2013, I graduated as a NP and work up the living liver and kidney donors and follow them postoperatively.

Research interests

So, I will be speaking to you today about the barriers

that have and continue to prevent Hispanics from the

• pportunity of a transplant.

This became of interest to me when I started to work

with many living organ donors.

I saw an opportunity for me to learn about what I can

do to help tear down the barriers and increase the transplant opportunities for Hispanics.

Who is Hispanic?

Merriam –Webster Dictionary Definition:

1.

• f or relating to the people, speech, or culture of

Spain or of Spain and Portugal

2.

• f, relating to, or being of Latin American descent

living in the United States; especially: one of Cuban, Mexican, or Puerto Rico origin

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Liver and Kidney Waiting Lists

17,000 patients on the liver waiting list Annually >1500 patients die waiting for a transplant 6,000 patients are transplanted annually in the U.S. 110,000 patients on the kidney waiting list In 2014, 4,761 patients died waiting 3,668 became too sick for a transplant

ALF/Mayo Clinic Tweetchat. (n.d.). Retrieved September 19, 2016, from http://www.liverfoundation.org/ The National Kidney Foundation. (n.d.). Retrieved September 19, 2016, from http://www.kidney.org/

What if you are Hispanic?

There are 55 million Hispanics in U.S. as of July 1, 2014, making people of Hispanic origin the nation’s largest ethnic or racial minority. Hispanics constitute 17% of the nation’s total population as of 2015 per the U.S. Census Bureau 19.5% of those waiting for a kidney, and 17% of those waiting for a liver are Hispanic In California, there are 14 million Hispanics, making Hispanics the largest ethnic or racial group in the state, with the majority being of Mexican descent. There are 23,00 Hispanics listed nationally with and 9,000 of those listed in California.

The National Kidney Foundation. (n.d.). Retrieved September 19, 2016, from http://www.kidney.org/ Matsuoka, L., Alicuben, E., Woo, K., Cao, S., Groshen, S., Qazi, Y., . . . Alexopoulos, S. (2015). Kidney transplantation in the Hispanic population. Clinical Transplantation Clin Transplant, 30(2), 118-123. doi:10.1111/ctr.12662

If you were in need of a kidney

• r liver transplant, would you

be able to ask a loved one to be a donor? Could you be a donor?

In 2011, a study by J. Siegel, et.al, they identified:

Those in need of a transplant are hesitant to ask their

loved ones to become a living donor

In a phone survey of 380 Hispanics identified by

surnames on a list, the data showed that they would willingly donate a kidney to a loved one and accept the

• ffer if they needed one

Only half of the participants, felt comfortable asking a

loved one to be a donor.

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Clinical and socioeconomic issues

There is a high incidence in Hispanics of risk factors

for end-stage kidney disease and live donation that may prevent Hispanics from being living donors: 1) diabetes 2) hypertension 3) obesity

Why the Reluctance?

The recipient needs to believe that it is suitable, appropriate for them to ask a family member to be a donor. The recipient is not comfortable asking someone to be a donor. They think that their family will come forward and offer to be a donor without needing to be asked. There can be a great deal of fear and concern on their part about asking someone to be donor. What if the person they ask to be a donor for them turns them down? There can also be difficulty in accepting an offer from a potential donor.

What would help change their reluctance to acceptance?

Educating potential recipients about the benefits of living donation Treatment of choice for end-stage kidney disease Improved quality of life Lower mortality rate Increases the patient’s comfort level to initiate a conversation about living organ donation Some focus groups attribute ignorance about kidney disease and LKD to not learning about it until someone in the family is diagnosed with the disease

Gordon, E., Mullee, J., Ramirez, D., Maclean, J., Olivero, M., Feinglass, J., . . . Caicedo, J. (2014). Hispanic/Latino concerns about living kidney donation: A focus group study. Progress in Transplantation, 24(2), 152-162. doi:10.7182/pit2014946

Concerns or Misconceptions about Living Donation

Not being able to offer a kidney to a child in the future It would prevent a woman to get pregnant or weaken a

man’s fertility

Concerns about the donor’s long term well-being. Shorten their life expectancy

Gordon, E., Mullee, J., Ramirez, D., Maclean, J., Olivero, M., Feinglass, J., . . . Caicedo, J. (2014). Hispanic/Latino concerns about living kidney donation: A focus group study. Progress in Transplantation, 24(2), 152-162. doi:10.7182/pit2014946

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Concerns of Misconceptions about Living Donation

Donating would affect the donor’s ability to return to a

normal lifestyle.

Donors would need to take medication for the rest of

their lives

Concerned about the need to avoid or be careful when

drinking alcohol, exercising, taking pain medications

• r nutritional supplements.

Gordon, E., Mullee, J., Ramirez, D., Maclean, J., Olivero, M., Feinglass, J., . . . Caicedo, J. (2014). Hispanic/Latino concerns about living kidney donation: A focus group study. Progress in Transplantation, 24(2), 152-162. doi:10.7182/pit2014946

Family Discussions about Donating

There are 2 types of authority figures in Hispanic families: 1) the eldest family member or 2) the family member who had lived the longest in the Unites States When both families had discussions about a donor’s decision to donate, the donor’s family members would try to discourage or prevent the donation. Sometimes, the donor would not avoid talking about donating to avoid the disapproval of family and friends.

Gordon, E., Mullee, J., Ramirez, D., Maclean, J., Olivero, M., Feinglass, J., . . . Caicedo, J. (2014). Hispanic/Latino concerns about living kidney donation: A focus group study. Progress in Transplantation, 24(2), 152-162. doi:10.7182/pit2014946

Financial Burden of Donating

Financially challenging for some

Hispanics, as it has been reported that 29.8% of Hispanics are uninsured and 25.8% are living in poverty.

Financial Burden of Donating

Lack of publicly available information about the

financial impact on donor’s lives.

Being out of work and how bills were going to be paid Cost of donor work up, postoperative care and

complications

Support of family to help manage the cost of running

the home

Patients on dialysis found it the most difficult as most

were undocumented and unable to obtain government health assistance.

Gordon, E., Mullee, J., Ramirez, D., Maclean, J., Olivero, M., Feinglass, J., . . . Caicedo, J. (2014). Hispanic/Latino concerns about living kidney donation: A focus group study. Progress in Transplantation, 24(2), 152-162. doi:10.7182/pit2014946

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Religion and Organ Donation

Most Hispanic are Roman Catholic and before organ

donation was endorsed by the Vatican, they would not consider live donation as it was thought to be a form of mutilation

Even so, many Hispanics believe that the Catholic

Church forbids donation.

Salim, A., Bery, C., Ley, E. J., Schulman, D., Navarro, S., Zheng, L., & Chan, L. S. (2012). A focused educational program after religious services to improve organ donation in Hispanic Americans. Clinical Transplantation Clin Transplant, 26(6). doi:10.1111/ctr.12036

Religion and Organ Donation

Other religious obstacles regarding deceased organ donation are: 1) no open casket 2) mutilation of the body 3) body needs to remain whole for when it arrives in heaven 4) could delay moving forward with the funeral 5) a miracle could happen and delay death

Salim, A., Bery, C., Ley, E. J., Schulman, D., Navarro, S., Zheng, L., & Chan, L. S. (2012). A focused educational program after religious services to improve organ donation in Hispanic Americans. Clinical Transplantation Clin Transplant, 26(6). doi:10.1111/ctr.12036

So why the religious obstacles?

Members of the church may not be aware of the

churches’ stance on organ donation

Lack of discussion of organ donation in church Concern that they would be placed on other

government surveillance lists if they signed up to be an

• rgan donor

If there is support from their religious community and their pastor or priest, people are more willing to move forward and donate.

Salim, A., Bery, C., Ley, E. J., Schulman, D., Navarro, S., Zheng, L., & Chan, L. S. (2012). A focused educational program after religious services to improve organ donation in Hispanic

• Americans. Clinical Transplantation Clin Transplant, 26(6). doi:10.1111/ctr.12036

Solutions for Improvement

The Hispanic Transplant Program, established by Juan

• C. Caicedo, an associate professor in surgery and organ

transplantation at Northwestern has increased living donor kidney transplants among Hispanic patients at Northwestern medicine by 70 percent.

Bornstein, D. (n.d.). Finding Organ Donors Concealed in Plain Sight. The New York Times. Retrieved May 27, 2016.

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Strategy for improvement

• Dr. Caicedo has done this by hiring bilingual staff,

inviting patients and family, especially parents and grandparents and acknowledging and respecting cultural sensitivities.

He and his team are now working with the Mayo Clinic

in Phoenix and Baylor University Medical Center at Dallas to test these approaches there.

Bornstein, D. (n.d.). Finding Organ Donors Concealed in Plain Sight. The New York TImes. Retrieved May 27, 2016.

Education and Community Information Programs

Culturally sensitive, mass media (television and radio) Websites addressing the difference between living

donation and deceased donation tailored to Hispanics

Providing access to Spanish-speaking clinicians Spanish-language educational materials Offering educational sessions in Spanish about live

donation

Summary

Language barriers Lack of information in Spanish Reducing financial barriers to live organ donation

1) out of pocket costs 2) lost wages

• Addressing misconceptions about organ donation

References

ALF/Mayo Clinic Tweetchat. (n.d.). Retrieved September 19, 2016, from http://www.liverfoundation.org/ Alvaro, E., Jones, S., Robles, A., & Siegel, J. (2005). Predictors of organ donation behavior among Hispanic

• Americans. Progress in Transplantation, 15(2), 149-156.

doi:10.7182/prtr.15.2.548p24717r135842 Alvaro, E., Siegel, J., Turcotte, D., Lisha, N., Crano, W., & Dominick,

• A. (2008). Living kidney donation among Hispanics: A qualitative

examination of barriers and opportunities. Progress in Transplantation, 18(4), 243-250. doi:10.7182/prtr.18.4.d81554656r475t01

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References

Bornstein, D. (n.d.). Finding Organ Donors Concealed in Plain Sight. The New York TImes. Retrieved May 27, 2016. Gordon, E. J., Caicedo, J. C., Ladner, D. P., Reddy, E., & Abecassis, M. M. (2010). Transplant Center Provision

• f Education and Culturally and Linguistically

Competent Care: A National Study. American Journal

• f Transplantation, 10(12), 2701-2707. doi:10.1111/j.1600-

6143.2010.03304.x

References

Gordon, E., Mullee, J., Ramirez, D., Maclean, J., Olivero, M., Feinglass, J., . . . Caicedo, J. (2014). Hispanic/Latino concerns about living kidney donation: A focus group

• study. Progress in Transplantation, 24(2), 152-162.

doi:10.7182/pit2014946 Gordon, E., Reddy, E., Gil, S., Feinglass, J., Rodde, J., Abecassis, M., & Caicedo, J. (2014). Culturally competent transplant program improves Hispanics‘ knowledge and attitudes about live kidney donation and transplant. Progress in Transplantation, 24(1), 56-68. doi:10.7182/pit2014378

References

Information about Organ, Eye, and Tissue Donation. (n.d.). Retrieved September 19, 2016, from http://www.organdonor.gov/ Matsuoka, L., Alicuben, E., Woo, K., Cao, S., Groshen, S., Qazi, Y., . . . Alexopoulos, S. (2015). Kidney transplantation in the Hispanic population. Clinical Transplantation Clin Transplant, 30(2), 118-123. doi:10.1111/ctr.12662 The National Kidney Foundation. (n.d.). Retrieved September 19, 2016, from http://www.kidney.org/

References

Salim, A., Bery, C., Ley, E. J., Schulman, D., Navarro, S., Zheng, L., & Chan, L. S. (2012). A focused educational program after religious services to improve organ donation in Hispanic Americans. Clinical Transplantation Clin Transplant, 26(6). doi:10.1111/ctr.12036 Salim, A., Ley, E. J., Berry, C., Schulman, D., Navarro, S., Zheng, L., & Chan, L. S. (2014). Increasing Organ Donation in Hispanic

• Americans. JAMA Surgery JAMA Surg, 149(1), 71.

doi:10.1001/jamasurg.2013.3967 Siegel, J. T., Alvaro, E. M., Hohman, Z. P., & Maurer, D. (2011). “Can You Spare an Organ?”: Exploring Hispanic Americans' Willingness to Discuss Living Organ Donation With Loved Ones. Health Communication, 26(8), 754-764. doi:10.1080/10410236.2011.566831

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Thank you for your time &attention