Transplant Recipient's Knowledge of Posttransplant Malignancy Risk: Implications for Educational Programs

Transplant patients are at increased risk for certain types of malignancies (1–14). Malignancy is one of the top causes of posttransplant mortality, particularly among liver and heart recipients 5 to 10 years posttransplantation (15, 16). There are a number of specific steps that patients can take to minimize their malignancy risk, but this requires that patients be aware of prevention methods. Anecdotal evidence has suggested that at least some patients are not taking all the necessary prevention steps and are not fully aware of the malignancy risks and prevention methods (17, 18). In addition, information regarding malignancy risk may not be retained. Systematic in-depth research on the extent of transplant patient awareness of malignancy risk, prevention methods and warning signs had not previously been conducted. Accurate assessment required patients feel comfortable enough to reveal any gaps in their knowledge. We therefore designed a self-administered survey that gave patients the opportunity to anonymously tell us: (1) how much they knew about malignancy and its prevention, (2) the sources of information, (3) when patients received the information, and (4) their preferences for learning about malignancy and its prevention. PATIENTS AND METHODS The National Kidney Foundation convened a team of medical professionals and opinion research specialists to design a survey that would determine what transplant recipients know—or think they know—about malignancy. The survey covered both the patient's personal experiences and preferences as to timing and messenger. The survey was designed to be self-administered, working equally well on paper or over the Internet. Transplant recipients volunteered for inclusion in the study after hearing about it from their physician, surgeon, transplant coordinator, nurse, social worker, another patient, the National Kidney Foundation (posted on their website and mentioned in the Winter 2006 edition of Transplant Chronicles mailed to 12,950 recipient's homes and to 659 transplant programs nationwide). In addition, NKF distributed flyers to transplant coordinators, nurses, and social workers nationwide who have partnered with them in the past on patient education. Recipients who had a cancer diagnosis were purposely over recruited. Patients provided their contact information for their preferred format for receiving this survey (e-mail or mailing address). All 584 patients who requested the survey received it. The first question in the study confirmed that the person completing the survey had received an organ transplant and thus qualified for this study. The surveys were completed between April 3 and May 3, 2006. Respondents requested their preferred format for receiving this survey—mail or e-mail. Surveys were initially mailed on April 3 and e-mailed on April 5. Up to two reminders were sent to patients who requested an e-mail survey. No reminders were sent to those who received the survey by mail. As this was not a scientifically drawn random sample of all transplant recipients, traditional statistical tests are inconclusive. Emphasis is placed on nonstatistical research-analysis methods. This includes comparing patient experience (as they recall it) to what is preferred by these same patients. The large number of responding patients allows comparison of the experiences and perceptions of different groups of patients to better understand where they may diverge. RESULTS Of the 467 transplant recipients sent the survey by e-mail, 338 (72.4%) completed the survey by May 3. Of the 117 patients sent the survey by mail, 71 (60.7%) returned the survey by May 3. The 409 respondents represent 70.0% of the 584 patients who received the survey. Of those responding, 153 (37.4%) had previously been diagnosed with some form of “cancer or precancer.” Further sample description is presented in Table 1.TABLE 1: Sample descriptionTABLE 1: ContinuedThis seems to be a somewhat higher incidence than in the actual population of transplant recipients because of oversampling patients who had experienced a problem with malignancy. A recent study from the Australia–New Zealand Dialysis and Transplant Registry found 12.1% of kidney transplant recipients developed some form of cancer posttransplant over an average observation period of 8.5±6.3 years (19). After 20 years of posttransplantation, 25% of Australian patients develop cancer (nonskin), although it rises to 65% when skin cancers are included (20). In a US nationwide study of transplant recipients using Medicare billing claims, kidney transplant recipients were found to have a twofold to more than 20-fold higher incidence than in the general population of various cancers (21). A nationwide Canadian study of 11,155 kidney recipients found a standardized incidence ratio of 2.5 compared with expected rates among transplant recipients (22). Perception Although cancer is one of the health conditions that worry patients, they worry even more about organ rejection and infection. A total of 73.2% worry at least “some” if not “a lot” about cancer, slightly less than the 77.0% who worry at least “some” about organ rejection, and the 75.2% for infection. The difference is more dramatic when it comes to worrying “a lot” (29.1% for cancer vs. 42.2% for organ rejection and 37.0% for infection). A total of 26.8% of the patients say they do not worry “much” or “at all” about cancer. This is compared with 49.3% for diabetes, 37.5% for heart disease, and 36.1% for bone disease. The focus changes after a cancer diagnosis. Cancer is a secondary worry behind rejection and infection before a cancer diagnosis. Two hundred fifty-four patients who have never been diagnosed with cancer or precancer rate their worry level about cancer as 2.8 of a maximum of 4 (where 4 is “worry a lot” and 1 is “worry not at all”), placing it between “some” (3.0) and “not much” (2.0). These same patients rate organ rejection as 3.3 and infection 3.1. Once cancer has been diagnosed, however, it shifts to the top concern. One hundred fifty-two patients diagnosed with cancer or precancer answered this question and rated their worry level about cancer as 3.2 and their worry level about both organ rejection and infection as 2.9. Knowledge Patients believe that they are fairly knowledgeable about many aspects of living with a transplant, but not the warning signs of cancer. A total of 35.5% say they know “nothing” or “not much” about the warning signs of cancer. This is more than 3.5 times the 9.5% who know this little about the warning signs of rejection. Table 2 shows additional detail on the responses to this question.TABLE 2: How much patients feel they know about each of these aspects of living with a transplantExperiencing cancer makes patients more aware of its warning signs, however, this is not universal Just 34.0% of the patients who have been diagnosed with cancer think that they know “a lot” about the warning signs of cancer. This is not quite twice the 18.5% rate among patients who have never been diagnosed with cancer. Less than half of the transplant recipients think that they know “a lot” or “all” about several key cancer risk factors and how they relate to transplant patients: prescription drugs (a total of 41.3%), weight (42.8%), skin tone (44.5%), eating habits (44.7%), and exercise (49.1%). A few more know “a lot” or “all” about family history (58.9%). As seen in Table 3, the most widely known are smoking and exposure to sun.TABLE 3: How much already know about these cancer risk factors and how they relate to transplant patientsPatients who have been diagnosed with cancer are not necessarily more knowledgeable about these risks than those who have never experienced cancer with the possible exceptions of skin tone (a total of 59.5% vs. 35.4% know “a lot”), exercise (58.8% vs. 43.3% know “a lot”), prescription drugs (54.2% vs. 33.5% know “a lot”), and weight (51.6% vs. 37.4% know “a lot”). A number of others say they know “little” or “nothing” about these cancer risk factors and how they relate to transplant patients despite having been diagnosed with cancer or precancer. Although some groups seem more knowledgeable than others about some risk factors, no group is consistently more knowledgeable on all of them. For example, the longer a patient has lived with their transplant the greater the likelihood of knowing “a lot” about family history (rising from 57.3% when less than 6 years out to 75.0% when more than 22 years), skin tone (rising from 39.3% when less than 6 years out to 62.5% when more than 22 years), and prescription drugs (rising from 33.1% when less than 6 years out to 56.3% when more than 22 years). More of the patients aged 55 or older than those under 35 know “a lot” about exposure to sun (91.5% vs. 64.0%), weight (50.0% vs. 30.0%), and prescription drugs (48.3% vs. 24.0%). More males than females know “a lot” about exercise (54.3% vs. 45.1%) and prescription drugs (47.3% vs. 36.2%). Patients with a college degree are more likely than those with less education to say they know “a lot” about exposure to sun (87.9% vs. 76.8%) and skin tone (51.1% vs. 36.2%). Minorities are less likely than non-Hispanic Caucasians to say they know “a lot” about exposure to sun (69.4% vs. 84.9%) and weight (28.6% vs. 44.7%). Just 30.3% of the transplant recipients believed they learned “enough” about the steps they could take to prevent cancer, including only 1.0% who think they learned “too much.” This is compared with 39.2% who think they learned “hardly any” or “none at all” about cancer prevention steps. A total of 32.9% who have been diagnosed with cancer and 42.9% who did not believe that they learned hardly anything about cancer prevention. Experiences One in 10 patients does not recall ever being told about the increased cancer risk for transplant recipients (10.8%). Only 35.9% say they learned about this risk before their transplant, including 22.7% who say it was when they first heard about transplantation. Another 43.3% say they first learned about this risk only after their transplant. The remaining 10.0% did not say when they first learned. Recipients under the age of 35 are particularly likely to say they have never been told about their increased cancer risk (22.0% under age 35, dropping to 8.6% age 45 or older). Two other groups are also less likely to have heard about this: recipients who do not have a college degree (17.0% vs. 5.7% with one) and those who have never been diagnosed with cancer or precancer (14.6% vs. 4.0% with cancer). As many as a third of the patients may have never discussed cancer with their doctor (31.0%, including 21.4% who specify they never have). A total of 42.3% of the transplant recipients do not recall discussing cancer with their doctor within the last 12 months. It is even higher (53.9%) among the recipients never diagnosed with cancer. Even among those diagnosed with cancer, 21.9% do not recall discussing cancer with their doctor within the last 12 months. As shown in Table 4, many patients recall their doctors providing at least some information about posttransplant life and risks, including transplant physicians and surgeons, specialists such as a nephrologist, and primary care physicians. Patients also get information about living with a transplant from many other sources. These proportions may overstate the incidence of receiving information related to malignancy as it may or may not have been covered.TABLE 4: Who told about aspects of living with a transplant in general and who they want to talk to them about malignancyPreferences Three-quarters prefer to hear about the cancer risk pretransplant (74.4%), with most saying it should be when they first hear about transplantation (50.5%). Transplant recipients most often prefer that a transplant physician (32.8%) or specialist such as a nephrologist (28.9%) be the first to tell them about the cancer risk. As seen in Table 4, these are the only two preferred by more than one in five patients. Recipients of kidneys are less likely to want the transplant physician to be the first to tell them about the cancer risk (27.9%) than are those who received a liver (51.5%) or other organ (43.1%). Most patients do not want to just talk to one person about the malignancy risk. After the first person tells them about this increased risk, they want to also discuss it with others. The total column in Table 4 is derived from adding the number who prefer to have a subsequent conversation about the malignancy risk to the number who prefer to first learn about this increased risk from this person. The total represents all the patients who desire to discuss the malignancy risk with each type of professional. A total of 72.4% of the transplant recipients want to talk to a transplant physician about malignancy and 69.7% want to discuss it with a specialist such as a nephrologist. Patients want ongoing malignancy education. They believe that transplant recipients should receive cancer prevention education “often” or “very often” during the 12 months after receiving a transplant (70.2%), not “just once” (2.2%). Then, after the first year, patients should be reminded at least “annually” about the risk of cancer (95.1%) and ways to prevent cancer (97.8%). Most want to be reminded “several times a year” if not “monthly” about the risk (43.8%) and prevention steps (50.4%). DISCUSSION This study is based on what patients perceive and what they recall. This is not always in total agreement with what actually occurred, but it does accurately reflect reality as the patient sees it. Although the sample is large, it was not randomly selected. It over-represents the views of recipients who have experienced cancer, yet the findings do not generally change when their views are excluded. Patients believe that they are fairly knowledgeable about many aspects of living with a transplant, but not cancer warning signs, risk factors, or prevention. Until they are diagnosed with cancer, malignancy is just one of many concerns, and not necessarily one of the top ones. Even after experiencing cancer first-hand, patients are often far from experts on how to combat it. It seems that, for whatever reason, we have not performed as good a job as we can in educating patients about malignancy. But there is good news in that patients recognize the gap in their knowledge, as virtually all welcome further education. Patients want this education to come early and be followed by regular reminders. Doctors and others can routinely discuss malignancy prevention without fear of alienating patients. Patients want to first learn about their increased risk of malignancy earlier than they remember hearing. Twice as many want to be told when they first hear about transplantation as recall having heard about the cancer risk then (50.5% vs. 22.7%). Because patients prefer to hear about this risk from a doctor, it can easily be incorporated into a discussion of all the pros and cons of transplantation. Doctors may not be discussing the cancer risk with patients as much as patients would like. Although 72.4% of the patients want their transplant physician to talk to them about the cancer risk, only 67.0% report that their transplant physician is talking to them about risk factors and other things they need to know about living with a transplant. Although that includes malignancy, the conversations that patients recall may or may not have included malignancy. The gap is even larger for specialists (69.7% desire discussion, 55.7% are actually having it) and primary care physicians (52.6% desire discussion, 22.7% are actually discussing). If anything, these numbers understate the gap because it is unlikely that all the reported conversations included a mention of malignancy. Many patients admit that they have not discussed cancer with their doctor for at least 12 months, if ever. As patients become more knowledgeable about risk factors and their increased risk of cancer, their interest in malignancy discussions might grow. Medical professionals should not rely on patients, even those who have been diagnosed with cancer, to initiate malignancy discussions. At least one in five who have already experienced cancer have not discussed cancer with their doctors in the past 12 months and it is even higher when the patient has never been diagnosed with cancer. With so few patients knowing the cancer warning signs or even to be watching for them, doctors may need to prompt at each visit to ensure that patients remain vigilant and are taking prevention steps. CONCLUSION Malignancy risk and prevention methods are not particularly well known among transplant recipients. Patients are eager to change that and they welcome ongoing education about malignancy prevention and reminders about the risk. Doctors can play a key role by initiating discussions, inquiring regularly about prevention steps, and providing patients with educational materials. ACKNOWLEDGMENTS The authors thank Linda Singleton-Driscoll, M.B.A. (Chléire Consulting, Inc., Richmond, VA) for expertise in opinion research; the National Kidney Foundation for ongoing staff support, particularly Gigi Politoski, Stephanie Gross, and Genevieve Coorey, R.N., B.S.N., Renal Cert., M.A.; and the following colleagues who served as an Advisory Board, providing guidance and critical review throughout this study: Deborah W. Chapa, R.N., M.S., A.C.N.P. (University of Maryland, Baltimore, MD), Ajai Chari, M.D., (Hematology Oncologist, New York-Presbyterian Medical Center, New York, NY), Leslie J. Christenson, M.D. (Dermatologist, Mayo Clinic, Rochester, MN), Ervin Epstein, M.D. (Dermatologist, UCSF, San Francisco, CA), Kathleen Falksenstein, Ph.D., C.N.P. (Drexel University, Philadelphia, PA), Thomas Habermann, M.D. (Oncologist, Mayo Clinic, Rochester, MN), Melissa Moore, R.N., C.C.T.C. (PreTransplant Coordinator, Methodist University Hospital Transplant Institute, Memphis, TN), Pearl Rigby, R.N., B.S.N. (PostTransplant Kidney-Pancreas Coordinator, Mayo Clinic, Jacksonville, FL), Abby Siegel, M.D. (Oncologist, New York-Presbyterian Medical Center, New York, NY), and Gerald J. Stanley, M.D. (Primary Care Physician, Branson, MO).They also thank the NKF Program staff for preparing two educational booklets based on what we learned in this survey and making individual copies available at no charge—Cancer Risk After Organ Transplantation: A Report to Transplant Professionals on Recipients' Knowledge, Awareness of Risk and Preventive Actions Related to Malignancy and, for patients, Reducing Cancer Risk After Transplantation.

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