Managing the kidney waiting list

Managing the kidney waiting list

Zarifian, April

Candidates on the kidney transplant list wait for longer periods and have increasing numbers of comorbid conditions. To ensure that these candidates are acceptable for transplantation when an organ becomes available, physical, psychosocial, and financial strategies are essential. The authors surveyed 68 transplant centers to determine current practices. Eighteen percent of centers did not reevaluate candidates. Other programs used time on the list, disease, age, or a combination of these factors as evaluation criteria. Initial cardiac evaluation was relied upon by 51.4% of centers, with varying criteria used to determine status. Social work evaluation was done by 42.6% of centers, usually annually. Annual financial reevaluation was performed in 57.4%. Data support reviewing candidates, especially those with diabetes, those who have been receiving dialysis for a long time, and those older than 60 years. The dedication of one coordinator to manage waitlisted candidates using age, diagnosis, and time receiving dialysis was effective in this study. (Progress in Transplantation. 2006;16:242-246)

Over the past 15 years, the kidney transplant waiting list has grown from approximately 15000 potential recipients to 65906 as of March 2006.’ Unfortunately, donation has not increased to meet this demand; consequently, potential recipients now wait 3 to 5 years for an organ. Characteristics of potential candidates have also changed, and the listed recipients now include larger numbers of persons older than 50 years of age (38764) and with second transplants (12082).’ Potential candidates also have an increased number of comorbid conditions such as diabetes, peripheral vascular, and coronary artery disease.2 As candidates await transplantation, their physical, psychosocial, and financial conditions are not static; each transplant center must design systems to update the candidate’s medical, psychosocial, and financial status to ensure his or her readiness at the time of transplantation.

According to the United Network for Organ Sharing (UNOS) and Organ Procurement and Transplantation Network,’ the rate of kidney discard is significant. In 2004, 9% of standard criteria donor kidneys, 23% of deceased after cardiac death donor kidneys, and 43% of extended criteria donor kidneys were discarded. There are many reasons for this discard, but a significant number of kidneys are not transplanted because of issues related to readiness of transplant candidates.

Review of the Literature

Only 2 articles offer guidance to kidney transplant programs in developing a system for maintaining candidates on the waiting list. The first report from the American Society of Transplantation2 surveyed 192 transplant centers in the United States to determine current practice. Of programs surveyed, 71% indicated that candidates were followed on an annual basis, with “high-risk” and kidney-pancreas candidates monitored more frequently. High-risk candidates were defined as those with diabetes, documented coronary artery disease, obesity, and advanced age. Cardiac screening methods used to reevaluate candidates were nuclear perfusion (40%), exercise thallium (33%), dobutamine echocardiography (31%), and angiography (15%). Angiography was used most frequently for kidney-pancreas candidates. These transplant programs had an expectation that the nephrologist and/or the candidate would call the center if there were a change in health status.

The transplant programs also required standard maintenance health screening, update of serological tests related to transplantation such as hepatitis, prostatespecific antigen in older male patients, and candidatespecific infectious disease screening.

According to the investigators, the data from this survey reinforced the need for routine follow-up for candidates on the transplant waiting list. One recommendation is that annual assessment, either in person or by telephone, should be required. Also recommended were annual screenings for coronary artery disease performed with noninvasive techniques for high-risk candidates by a designated cardiologist available to the program for consultation. In addition, standard health maintenance and screening with updating of serological and other relevant blood tests were recommended to be a component of the update.

Further recommendations were that each center have a consistent and organized program, that relationships be developed with referring nephrologists and dialysis centers, and that candidates be aware of program expectations. The definition of “high-risk” candidates should be developed carefully. Criteria for follow-up for candidates on the waiting list are still in a formative stage, but centers have a responsibility to develop a program to meet both the candidate’s and the program’s needs.

In 2002, a national conference1 on the kidney waiting list was held in Philadelphia and included representatives from multiple professional groups with an interest in transplantation. At this conference, Work Group 3 was charged with devising practical means to ensure candidate readiness at the time of transplantation, including maintaining and monitoring the candidates on the waiting list. The recommendations were published in 2003 and include the areas of communication, preventive health, cardiovascular monitoring, infectious disease testing, status 7 considerations, and removal from the list.

Work Group 3 proposed that a national electronic communication network similar to the Unet system currently used by transplant centers to communicate with UNOS be designed. This new system would include dialysis centers, transplant programs, and histocompatibility laboratories. Until this system is in place the group recommended that a coordinator be designated at each center to communicate with dialysis center staff who facilitate transplantation; the transplant center would be responsible for designing and communicating the wait list requirements to all parties concerned.

Work Group 3 also recommended preventive health maintenance for candidates on the basis of current general population guidelines and the Kidney/Dialysis Outcomes Quality Initiative (K/DOQI) recommendations.4 K/DOQ1 recommends that all dialysis patients have a hematocrit level of 0.33 to 0.36, blood pressure of 130/80 mm Hg or less, intact parathyroid hormone with calcium and phosphorus in acceptable range, sodium bicarbonate of 20 to 23 mEq/L, and urea clearance of 1.2. General health maintenance guidelines that should be applied include National Cholesterol Education Program and American Diabetes Association guidelines for hyperlipidemia,’ Joint National Conference guidelines for blood pressure,6 and general cancer screening guidelines.7

Work Group 3 recommended that the modality for listed candidates for cardiovascular testing be a stress echocardiogram with nuclear imaging. Angiography should be done if this noninvasive imaging is significant for coronary disease. If the initial cardiac evaluation is negative, the recommendations for follow-up testing were annually for diabetic candidates, biannually for high-risk nondiabetic candidates using the Framingham criteria for risk stratification, and every 3 years for low-risk candidates. If the initial evaluation is positive with no previous revascularization or percutaneous intervention, candidates should be screened annually. If the candidate has had a successful coronary bypass, the first follow-up testing should be at 3 years and then annually, but if unsuccessful then the candidate should be screened annually. If the candidate has asymptomatic moderate or severe aortic stenosis, an annual echocardiogram is recommended.

Work Group 3 did not recommend repeat screening for Epstein-Barr virus, toxoplasmosis, cytomegalovirus, or herpes simplex. Candidates should be screened for Strongyloides in endemic areas such the southern United States and tropical regions. Candidates with positive tuberculin skin test who have been treated should have an annual chest radiograph. Hepatitis B immunization should be given to all unexposed candidates with annual antibody screening and boosters as indicated. Candidates negative for hepatitis C on the ELISA (enzyme-linked immunosorbent assay) test should be screened annually. HFV screening should be done annually for high-risk individuals.

Candidates who develop contraindications to transplantation, such as metastatic disease and severe coronary disease, should be removed from the transplant list. Candidates with potential problems should be status 7; that is, on hold.

Both these articles offer valuable information for transplant centers designing waiting list programs. However, an area not addressed in either article is the financial means to cover the extra expense accrued by these réévaluations. How the transplant program, the dialysis unit, and the candidate’s private resources will share the expense is not discussed.

Methods

In July 2005, we conducted a survey to ascertain current practice regarding the use of wait list protocols by transplant centers. The questions were designed using information addressed in the articles reviewed above that was pertinent to candidate monitoring on the waiting list. The surveys were sent to the medical directors of 257 kidney transplant centers; 68 completed responses were returned, with a response rate of 26% (see Table). Only 1 response per program was used. Respondents completing the survey were 30 physicians, 30 coordinators, 4 nurse practitioners, and 4 others from 63 adult centers and 5 pediatrie centers. Center size varied from 12 centers with fewer than 60 candidates, 7 with 60 to 100 candidates, 35 with 100 to 500 candidates, 11 with 500 to 1000 candidates, and 3 with more than 1000 candidates. Forty-three programs (63%) had a written protocol. No pediatric program had a formal program but all followed their candidates on a regular basis.

Results

Programs had varying criteria for follow-up. Eighteen programs replied that they did not reevaluate candidates. Time on the list was the most frequently used single criteria (n=18), with disease alone used by 3 centers and age alone used by 2 centers. Eighteen centers used all 3 criteria and another 7 centers used combinations of age, disease, and waiting time (Figure 1).

Most reevaluations were performed by the transplant team, with 3 done by nephrologists and 1 by a cardiologist. Most candidates (86.7%) saw a physician and the remainder saw a nurse practitioner or physician assistant. Centers saw most candidates at 1 year (54.4%), with 4.4% seeing them more frequently and 4.4% less frequently. Centers also used contact with the dialysis center (58.8%) and contacts with the candidate (57.4%) to provide updated information on candidacy.

Social work follow-up was done by 42.6% of centers every 12 months, with 51.1% having no social work reevaluation. Three percent of programs saw candidates on an as-needed basis. Financial reevaluation was done at 3 months (4.4%), 6 months (1.5%), and 12 months (57.4%). One center had a 2-year financial follow-up and 13 centers reported no continued evaluation of financial status.

Four centers (5.9%) did no further HLA testing after the initial visit, but 75% of centers had monthly follow-ups. Other centers monitored antibody screenings every 2 months (5.9%), every 3 months (8.8%), and every 4 months (4.4%).

Routine laboratory evaluation (chemistry, complete blood cell count) was done by slightly more than half (55.9%) of programs. Transplant programs initiated 35.3% of routine laboratory testings and dialysis centers initiated 20.6%. Thirty-one percent of programs repeated serological testing at 1 year and an additional 8.8% repeated only serology tests that were negative. Twenty-one programs reported no routine evaluation of patients with hepatitis C, with 18 programs following annual RNA and liver function tests. Three programs did repeat liver biopsies at 2 years and 6 relied on symptoms, liver function tests, or RNA liters to assess liver function. Thirty-three programs did not have reevaluation procedures for hepatitis B patients, with some following up RNA and liver function tests (n= 12). Seven programs followed up annual liver function tests and another 7 programs used hepatologists to follow up liver function tests. Five programs reported following up candidates’ RNA levels and 4 reported following up symptoms.

Because of the high mortality and morbidity associated with cardiovascular events in dialysis patients, the follow-up for cardiac evaluation is especially important. Most programs relied on the initial evaluation and cardiac history (51.4%) as reevaluation criteria. American Heart Association criteria were used by 7.4% of programs and 32.4% used a combination of these criteria, evaluation, and cardiac history. There was no agreement as to the type of cardiac testing used (Figure 2).

As a result of reevaluation, programs did remove candidates from the waiting list, ranging from 1 candidate to 18 at a large center, with a mean of 6.29 and a median of 4. Candidates were also found to be unsuitable at the time they were called in for transplant mostly because of infection (44.1%) and cardiac issues (25%). Body mass index, psychological issues, financial issues, and family issues accounted for 6% (Figure 3).

In summary, both of the articles reviewed along with our new survey support the continued reevaluation of candidates on the waiting list with attention to high-risk candidates. Although programs did not always have a formalized protocol, general health maintenance and routine laboratory testing was done by 50% of the participating centers, with 31% repeating serological tests that were negative. However, only 30% of programs used this opportunity to evaluate the status of candidates with hepatitis B and C.

Implementation

The Tulane Abdominal Transplant Institute has been a kidney transplant center since 1953. Currently, there are 573 candidates on the waiting list and new evaluations of 60 to 70 patients per month. Local waiting time for a deceased donor kidney transplant is 2 to 5 years. The program also performs approximately 30 to 40 living donor kidney transplantations each year.

The Tulane Abdominal Transplant Institute has had a dedicated list maintenance coordinator since February 2005, with dedicated clinic sessions for reevaluations only. Candidates are first screened by telephone interview using a structured interview and then scheduled for further evaluation as appropriate. All candidates with cardiac history and all those waiting for a kidneypancreas transplant are seen annually by the nurse practitioner, social worker, and financial counselor in the transplant clinic. The dietician sees candidates only on referral in this clinic. Nuclear stress testing is scheduled on the day of visit for appropriate candidates.

Candidates are instructed to bring test results from outside cardiologists. Upon completion of the evaluation, candidates are presented at the weekly selection committee meeting for review to continue on the list.

The initial strategy employed by the coordinator has been to use the criteria of age, diagnosis, time receiving dialysis, and time on the waiting list to determine those needing evaluation immediately. Candidates who had not been seen in more than 2 years, diabetic, and/or had cardiac problems were seen as a priority. We have now updated the solitary pancreas list and the kidney pancreas list and are working through the kidney-only list. To date, the only candidates removed from the list have been those who were deceased at the time of initial contact. Of 54 candidates who were reevaluated with a stress test, 7 had ischemic changes and were referred to cardiology for angiography and further care. These candidates were made status 7 pending the evaluation.

One advantage of our reevaluation has been that the criteria have enabled us to have current data for several candidates who have come in shortly after their reevaluation. It has decreased uncertainty when calling the candidate for the transplant and decreased the number of questions when the patient is admitted, especially regarding cardiac status.

Since this initial effort, a formal list maintenance protocol has been written and approved by the team for use with kidney, pancreas, and kidney-pancreas candidates. It includes annual telephone review and appointments scheduled for any changes in health status. The use of the telephone screening tool was tested as we called all our listed candidates after hurricane Katrina.

All candidates aged 60 years and older and with a medical history of diabetes, cardiac disease, and/or vascular disease are seen annually, as are those who are positive for hepatitis B, hepatitis C, or HIV. Health maintenance issues addressed at the annual update are prostate-specific antigen for men older than 45 years, mammogram and Papanicolaou smears for women older than 20 years or those who are sexually active, and colorectal screening every 5 years beginning at age 50. Laboratory data include viral studies, liver function test for hepatitis B and C, and viral load for HIV and CD4 counts.

These criteria are general; some candidates need closer follow-up because of specific medical conditions. These follow-up screenings are designated at the time the candidate is initially accepted for listing.

Conclusions

Reevaluation of candidates on the waiting list has become a necessity as candidates wait longer and lists grow beyond the ability of pretransplant coordinators to maintain them. A dedicated coordinator who focuses on the maintenance of candidates on the waiting list can increase a transplant program’s ability to monitor and maintain the candidate’s health, making it more likely that he or she will be an appropriate candidate at the time of transplantation. In addition, healthier transplant candidates would logically have fewer problems after transplant surgery; this is a topic for future research.

It is essential for every transplant program to have all active candidates prepared to accept an organ at any time to decrease the rate of discarded kidneys. Although there is no mandate from UNOS for list maintenance, it seems to be the most appropriate way to have candidates prepared to accept an organ at any time. In our survey, 67.6% of respondents favored UNOS-driven criteria for maintaining the candidates on the waiting list.

In conclusion, maintenance of candidates on the waiting list is necessary to provide them with the best chance to receive an organ. A consensus conference that includes all the stakeholders in the transplant process could provide the best means to ensure that all aspects of list maintenance are discussed.

References

1. Organ Procurement and Transplantation Network. National data report. Available at: http://www.optn.org/data. Accessed March 18, 2005.

2. Danovitch GM, Hariharan S, Pirsch, et al. Management of the waiting list for cadaveric kidney transplants: report of a survey and recommendation by the clinical practice guidelines committee of the American Society of Transplantation. JAm SociNephrol. 2002:13:528-535.

3. Gaston RS, Danovitch G, Adams PL, et al. The report of a national conference on the wait list for kidney transplantation. Am J Transplant. 2003;3:775-785.

4. National Kidney Foundation. K/DOQI clinical practice guidelines. Available at: http://www.kidney.org/professionals/ doqi/guidelines. Accessed March 18,2005.

5. Grundy SM, Cleeman JI, Merz CN, et al. Implications of recent clinical trials for the National Cholesterol Education Program Adult Treatment Panel III Guidelines. Circulation. 2004:110:227-239.

6. Jones DW, Hall JE. Seventh Report of the Joint National Committee on Prevention, Detection, Evaluation and Treatment of High Blood Pressure. Hypertension. 2004:43:1-3.

7. Smith RA, Cokkinides V, Eyre HJ. American Cancer Society guidelines for the early detection of cancer. CA Cancer J Clin. January-February 2005:55:31-44.

April Zarifian, APRN, DNSC, CNN, Marian O’Rourke, RN, CTCC

Tulane University Hospital and Clinics,

Tulane Abdominal Transplant Institute,

New Orleans, La

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