Transplant Center Provision of Education and Culturally and Linguistically Competent Care: A National Study

Although transplant centers are required to educate patients about kidney transplantation (KT) and living donation (LD), little is known about the educational format, and cultural and linguistic competence necessary for patients to make informed treatment decisions. This study surveyed US transplant administrators about education provided concerning KT and LD and culturally and linguistically competent care. Transplant administrators were invited to participate in an anonymous Internet-based survey about education format, education providers, promoting LD, culturally and linguistically competent care and center characteristics. Most (61%) transplant administrators contacted (N = 280/461) completed the survey. Most administrators (91%) reported that their center provides any type of formal education in their pre-KT evaluation. Education was mostly provided by: nurses (97%), social workers (72%) and surgeons (55%), and predominantly as one-on-one (80%) versus group discussions (60%). Education was primarily delivered through written materials (93%). Written educational materials in Spanish (86%) and the provision of interpreters (82%) were emphasized over educational sessions in Spanish (39%), or employing bilingual (51%) and bicultural staff (39%). Half (55%) promoted LD as the best option. Transplant centers need to take greater efforts to consistently provide appropriate education, promote LD, and provide culturally and linguistically competent care to ensure effective communication with all patients. Although transplant centers are required to educate patients about kidney transplantation (KT) and living donation (LD), little is known about the educational format, and cultural and linguistic competence necessary for patients to make informed treatment decisions. This study surveyed US transplant administrators about education provided concerning KT and LD and culturally and linguistically competent care. Transplant administrators were invited to participate in an anonymous Internet-based survey about education format, education providers, promoting LD, culturally and linguistically competent care and center characteristics. Most (61%) transplant administrators contacted (N = 280/461) completed the survey. Most administrators (91%) reported that their center provides any type of formal education in their pre-KT evaluation. Education was mostly provided by: nurses (97%), social workers (72%) and surgeons (55%), and predominantly as one-on-one (80%) versus group discussions (60%). Education was primarily delivered through written materials (93%). Written educational materials in Spanish (86%) and the provision of interpreters (82%) were emphasized over educational sessions in Spanish (39%), or employing bilingual (51%) and bicultural staff (39%). Half (55%) promoted LD as the best option. Transplant centers need to take greater efforts to consistently provide appropriate education, promote LD, and provide culturally and linguistically competent care to ensure effective communication with all patients. Patients with end-stage organ disease are routinely referred to transplant centers to learn about transplantation and eligibility for transplantation or donation. Patients' rights condition of Medicare participation for hospitals (1U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services. 42 CFR Volume 3, part 482. Medicare program; hospital conditions of participation. 2004. Available at: http://www.access.gpo.gov/nara/cfr/waisidx_04/42cfr482_04.html. Accessed January 11, 2010.Google Scholar) require that transplant candidates and potential donors be educated about the procedures, risks, benefits and alternatives to transplantation (2Abecassis M Adams M Adams P et al.Consensus statement on the live organ donor..JAMA. 2000; 284: 2919-2926Crossref PubMed Scopus (414) Google Scholar). Transplant centers are required to provide patients with an extensive informed consent process beginning at referral and ending at surgery (3U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services. 42 CFR parts 405, 482, 488, and 498 Medicare program; hospital conditions of participation: Requirements for approval and re-approval of transplant centers to perform organ transplants; final rule, 2007. Available at: http://www.cms.hhs.gov/CertificationandComplianc/downloads/Transplantfinal.pdf. Accessed November 23, 2009.Google Scholar). However, there is no standardized tool that evaluates and assures comprehension in informed consent tailored to transplantation, although the Department of Veterans Affairs has developed a generic tool for surgical procedures (4Fink A Prochazka A Henderson W et al.Enhancement of surgical informed consent by addition of repeat back: A multicenter, randomized controlled clinical trial..Ann Surg. 2010; 252: 27-36Crossref PubMed Scopus (91) Google Scholar). Transplant education is essential for ensuring patients' and donors' informed treatment decisions and increasing patients' access to transplantation (5Waterman A Barrett A Stanley S Optimal transplant education for recipients to increase pursuit of living donation..Prog Transplant. 2008; 18: 55-62Crossref PubMed Google Scholar). Education is also pivotal for increasing the likelihood that patients will pursue the option of living donation (LD), which offers better health outcomes for the recipients than deceased donor kidney transplants (6Rodrigue J Cornell D Kaplan B Howard R A randomized trial of a home-based approach to increase live donor kidney transplantation: Effects in Blacks and Whites..Am J Kidney Dis. 2008; 51: 663-670Abstract Full Text Full Text PDF PubMed Scopus (106) Google Scholar). Little is known about how transplant programs educate patients and who provides this education. Studies report that transplant nurses typically provide most education, followed by transplant nephrologists or surgeons (7McPake D Burnapp L Caring for patients after kidney transplantation..Nurs Stand. 2009; 23: 49-57Crossref PubMed Google Scholar,8Smith MD Kappell DF Province MA et al.Living-related kidney donors: a multicenter study of donor education, socioeconomic adjustment, and rehabilitation..Am J Kidney Dis. 1986; 8: 223-233Abstract Full Text PDF PubMed Scopus (105) Google Scholar). The absence of a standardized process for educating patients raises ethical concerns about the quality of care. Consistent levels of education across transplant centers are needed to facilitate equal awareness of and access to transplantation (7McPake D Burnapp L Caring for patients after kidney transplantation..Nurs Stand. 2009; 23: 49-57Crossref PubMed Google Scholar). A study of kidney transplant candidates found that they received more education from transplant centers (79%) than from dialysis centers (66%), their regular physician (54%), or themselves (31%) and desired more information on LD (5Waterman A Barrett A Stanley S Optimal transplant education for recipients to increase pursuit of living donation..Prog Transplant. 2008; 18: 55-62Crossref PubMed Google Scholar). Such research suggests that patients rely heavily on transplant centers for education about their treatment options. Furthermore, simply providing education is not sufficient. Rather, education must be delivered in culturally and linguistically competent ways. Table 1 presents definitions of these types of competency. National policy-making organizations including the Institute of Medicine (IOM), American Medical Association (AMA) and Department of Health and Human Services (DHHS) advocate for the provision of culturally and linguistically competent care as a form of quality and patient-centered care (13Institute of Medicine, Committee on Quality of Health Care in America. Crossing the quality chasm: New health system for the 21st century. Washington, DC: National Academies Press, 2001.Google Scholar,14Fortier J, Bishop D, In Brach C, ed. Setting the agenda for research on cultural competence in health care: Final report. Rockville, MD: U.S. Department of Health and Human Services Office of Minority Health and Agency for Healthcare Research and Quality, 2003.Google Scholar). Culturally and linguistically competent care is integral to Health People 2010 goals to increase quality and years of healthy life and to eliminate health disparities (15U.S. Department of Health and Human Services. Healthy people 2010: Understanding and improving health. Washington, DC: U.S. Department of Health and Human Services, 2000.Google Scholar).Table 1Definitions of culture, cultural competency and linguistic competencyCultureCulture, or civilization, taken in its broad, ethnographic sense, is that complex whole which includes knowledge, belief, art, morals, law, custom, and any other capabilities and habits acquired by man as a member of society.9Tylor EB. Primitive culture. London: John Murray, 1871.Google ScholarCultural competencyA set of values, principles, behaviors, attitudes, policies and structures that enable organizations and individuals to work effectively in cross-cultural situations.10U.S. Department of Health and Human Services, Office of Minority Health. National standards for culturally and linguistically appropriate services in health care final report. Washington, DC: U.S. Department of Health and Human Services, 2001.Google ScholarLinguistic competencyThe capacity...to communicate effectively and convey information in a manner that is easily understood by diverse audiences including persons of limited English proficiency, those who have low literacy skills or are not literate, individuals with disabilities and those who are deaf or hard of hearing10U.S. Department of Health and Human Services, Office of Minority Health. National standards for culturally and linguistically appropriate services in health care final report. Washington, DC: U.S. Department of Health and Human Services, 2001.Google Scholar,11Goode TD, Jones W. National Center for Cultural Competence. Georgetown University Center for Child & Human Development, March 2009. Available at: http://www11.georgetown.edu/research/gucchd/nccc/foundations/frameworks.html#lcdefinition. Accessed July 1, 2010.Google ScholarLimited English proficiencyIndividuals who do not speak English as their primary language and who have a limited ability to read, speak, write or understand English can be limited English proficient, or ′LEP′. These individuals may be entitled language assistance with respect to a particular type or service, benefit or encounter... Federal laws particularly applicable to language access include Title VI of the Civil Rights Act of 1964 and the Title VI regulations, prohibiting discrimination based on national origin, and Executive Order 13166 issued in 2000. Many individual federal programs, states and localities also have provisions requiring language services for LEP individuals.121LEPgov, the Website of the Federal Interagency Working Group on Limited English Proficiency. Limited english proficiency: A federal interagency website. Available at: http://www.justice.gov/crt/lep/index.htmAccessed May 26, 2010.Google Scholar Open table in a new tab The extent to which transplant centers provide culturally and linguistically competent care remains unknown. However, providing culturally and linguistically competent care is especially important in transplantation because the pro-portion of racial and ethnic minority kidney transplant re-cipients is rapidly increasing. In particular, Hispanics are the fastest growing ethnic minority group in the United States and comprised 14.7% of kidney transplant recipients in 2009 (16UNOS web site 2010 Data. Available at:http://www.unos.org/data/. Accessed February 10, 2010.Google Scholar). Additionally, Hispanics are disproportionately represented (17.9%) among candidates waiting for a kidney (16UNOS web site 2010 Data. Available at:http://www.unos.org/data/. Accessed February 10, 2010.Google Scholar), indicating that Hispanics need kidney transplants disproportionately more than Non-Hispanic Whites. Moreover, cultural values and beliefs inform Hispanics' and other minority groups' treatment decisions regarding transplantation and LD (17Siegel J Alvaro E Lac A Crano W Intentions of becoming a living organ donor among Hispanics: A theory-based approach exploring differences between living and nonliving organ donation..J Health Commun. 2008; 13: 80-99Crossref PubMed Scopus (65) Google Scholar). Culturally competent programs may help to address patients' cultural concerns and increase LD rates. Culturally competent interventions have been found to increase deceased organ donation rates among African Americans and Hispanics (6Rodrigue J Cornell D Kaplan B Howard R A randomized trial of a home-based approach to increase live donor kidney transplantation: Effects in Blacks and Whites..Am J Kidney Dis. 2008; 51: 663-670Abstract Full Text Full Text PDF PubMed Scopus (106) Google Scholar,18Alvaro E Siegel J Crano W Dominick A A mass media intervention on Hispanic organ donation..J Health Commun. 2010; 15: 374-387Crossref PubMed Scopus (34) Google Scholar). Therefore, it is important for transplant centers to provide culturally and linguistically competent care so that racial/ethnic minority patients can better comprehend available treatment options and effectively manage their transplant if that option is pursued. We undertook this study to assess the extent to which US kidney transplant programs provide education and culturally and linguistically competent care to kidney transplant candidates, recipients and donors. Assessing how transplant centers provide the education, which clinicians provide the education and the availability of culturally sensitive education services can allow us to establish standards of education and care. We obtained e-mail addresses from United Network for Organ Sharing (UNOS) of the 555 transplant administrators representing all active UNOS member transplant centers performing organ transplants in 2009 (n = 253). An e-mail inviting participation in an Internet-based survey was sent to these 555 administrators five times between February 2009 and June 2010. More than one administrator from the same center could respond. Thirty-four e-mails were returned as 'undeliverable' or 'error', and 59 administrators appropriately declined participation because they did not represent kidney transplant programs or left the center, which reduced the eligible sample to 461. As the survey was anonymous in order to increase response rates, the identities of the participating centers are unknown. Thus, our analysis was based on administrator responses rather than on participating centers. approval for this study was obtained from for study participation was of the survey. of transplant center types of education and culturally and linguistically competent care were based on We the of kidney transplant recipients who are for analysis were and was were The responses were analysis to responses by or from the analysis for health services and PubMed Scopus Google Scholar). We by the to and analysis for health services and PubMed Scopus Google Scholar). were to a new group of the was to for new and were to the set of This process was no new and was analysis for health services and PubMed Scopus Google Scholar). and responses and in by and (61%) kidney transplant completed the survey. UNOS were Table center of participating who (n = represented or and transplant centers. reported that Hispanics and in their kidney transplant As in Table 3, of administrators reported that Hispanics represent over of their kidney and of administrators that represent over of their kidney center of kidney recipients in do not to because did not the did not of recipients with living in did do not to because did not the did not did Open table in a new tab Table of kidney transplant recipients who are Hispanic and Spanish do not to because did not respond. do not to because did not respond. do not to because did not do not to because did not respond. Open table in a new tab Most administrators (91%) reported that their transplant provides formal educational sessions kidney evaluation. As in Table the clinicians who most routinely provided education are nurses (97%), social workers (72%) and surgeons A of reported that one provided education, all reported of The who was as the was a (n = or other (n = who routinely provide education to kidney Open table in a new tab Transplant administrators reported that their centers of formal educational with the most written materials one education (80%) and group administrators one form of education was and one that no formal education was of education provided as part of the formal education reported that one was all of of education reported that one was all of of education Open table in a new tab administrators reported that their living kidney donation in at one Table presents the at transplant centers to promote The most approach was to the option of LD on a one-on-one of (55%) reported that their programs all patients that LD is the best option. (n = reported that one of promoting LD was In one-on-one education was predominantly to promote to promote living donation the option of LD on one-on-one to or or potential living donors to kidney the option of LD in a group all patients that LD is the best the option of LD the transplant that a benefit from the option of LD the it Open table in a new tab Table presents the types of culturally and linguistically competent care centers provided to patients in and for Hispanic and patients Most administrators reported that their centers interpreters in or by and provide bilingual (51%) or bicultural staff a reported that transplant center staff cultural competency of linguistically and culturally competent care provided by transplant of care and in by competency Open table in a new tab Although most administrators reported that their center provides written educational materials in Spanish (86%) and written in Spanish a of administrators reported that their centers provide educational sessions in The of Spanish at centers was to the provision of written educational materials = = written = and educational sessions = This is the national survey to assess the provision of education and culturally and linguistically competent care across and kidney transplant centers. We found transplant centers in the provision of education in of who provides it and the of transplant centers promote LD as an option. transplant centers provide of culturally and linguistically competent care to their Hispanic kidney transplant Most centers rely predominantly on nurses in with other clinicians and educational to education to kidney transplant patients. our (7McPake D Burnapp L Caring for patients after kidney transplantation..Nurs Stand. 2009; 23: 49-57Crossref PubMed Google Scholar). In an study that surveyed living kidney their of information on donation were the transplant or the transplant followed by the transplant other health care social workers and MD Kappell DF Province MA et al.Living-related kidney donors: a multicenter study of donor education, socioeconomic adjustment, and rehabilitation..Am J Kidney Dis. 1986; 8: 223-233Abstract Full Text PDF PubMed Scopus (105) Google Scholar). We found that most administrators (86%) reported written materials for educating transplant patients. a survey study of organ transplant educational to transplantation were one-on-one discussions with health care or and J new to address of organ transplant Transplant. 2009; PubMed Google Scholar). Additionally, in an living kidney donors (N = reported received information through discussions materials and with most that information was or or not MD Kappell DF Province MA et al.Living-related kidney donors: a multicenter study of donor education, socioeconomic adjustment, and rehabilitation..Am J Kidney Dis. 1986; 8: 223-233Abstract Full Text PDF PubMed Scopus (105) Google Scholar). 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Accessed February 10, 2010.Google Scholar) and that most kidney transplant centers in 2009 an living kidney donation United Network for Organ Sharing Transplant Centers Kidney in the U.S. January to February 2010 by on as of May 2010.Google Scholar), as performing at living donor kidney transplants it was to that of the reported patients that LD is the is of administrators report that their centers do not promote We that transplant centers provide more formal educational programs about LD to increase the likelihood of LD, ensure informed treatment kidney outcomes and to help the organ that US kidney transplant centers provide of culturally and linguistically competent care. The on linguistic competency to have the need for culturally competent Although interpreters are and ethical with J, Bishop D, In Brach C, ed. Setting the agenda for research on cultural competence in health care: Final report. Rockville, MD: U.S. Department of Health and Human Services Office of Minority Health and Agency for Healthcare Research and Quality, 2003.Google Scholar), particularly about complex clinical conditions as centers rely bicultural and bilingual Although bicultural and bilingual staff a of about transplantation, staff who are bilingual and bicultural are for to communicate with patients in their language and for with the cultural of a Although staff may be with cultural as through the they are to be in patients' cultural transplant staff may be most effective in with patients and their who may beliefs and values about kidney donation and transplantation that from transplant Transplant administrators may they need to provide linguistically and culturally competent care to patients representing all cultural to Title with limited English all hospitals Department of Health and Human Services (DHHS) Federal assistance must take to ensure access to and services they provide to limited English persons Executive Order 13166 of 11, to Services for Limited English Scholar). transplant centers to take a in providing culturally and competent care the of their transplant and donor and the potential of care on their outcomes L J S M through and for outcomes among Hispanic care 2009; Full Text Full Text PDF PubMed Scopus Google Scholar). transplant educational programs and increasing their cultural and linguistic competency staff and have to for education including or to dialysis for J new to address of organ transplant Transplant. 2009; PubMed Google Scholar). study has As the survey was were not to assess the quality of education or culturally competent care at any individual transplant Transplant administrators may not be of the educational that clinicians provide to patients. contacted administrators at center, centers may have been in the the response is than although administrators from programs contacted us to themselves from participation as they represented programs that perform transplants and were it is if all administrators remains to be or not or all of these of cultural and linguistic are more effective than We did not assess of consent in this research is needed to assess transplant and donor for education regarding transplantation and LD, and to transplant patients' for culturally sensitive transplant care. Studies culturally competent educational and clinical and the of culturally competent transplant education and care on outcomes and LD rates. interventions take that patients which may their process A A care of patients 2009; PubMed Scopus Google Scholar). Furthermore, the extent to which centers to regarding for donor and and patients' comprehension of information about transplantation and donation as through the help of education. research may be an approach to awareness among transplant about the and other that the informed consent Transplant centers need to take greater efforts to consistently provide education, promote LD as an and provide culturally and linguistically competent care to ensure effective communication with all patients. An of this was at the of the American Transplant May and May 2010. 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