Results of a Patient Survey for Assessment Services in Renal Transplant Patients With a History of Cancer

Abstract

Patients with cancer who require a kidney transplant often face a prolonged time on the waiting list to ensure a sufficient relapse-free time. Patients and relatives were invited to the patient assessment service where they get an individualized risk assessment and a recommendation for transplantation and waiting period directly from an expert panel. We investigated in 31 patients who filled out questionnaires concerning depression, anxiety, distress, and quality of life and were interviewed for their satisfaction, experiences, and circumstances of the counseling. In 12 (39%) of the 31 patients, a recommendation for transplantation could be made, although the regular waiting period was not yet achieved. The assessment service was received as very good or good by 22 (79%) of 28 patients. We found no relevant differences in patients with regular and shortened waiting time. An interdisciplinary assessment service is a valuable instrument to help with a decision-making between 2 life-threatening conditions.

Keywords

patient assessment service interdisciplinary kidney transplantation cancer patient centered interview

Background

Patients with active cancer are not considered as transplantation candidates because of the risk of tumor progression except for hepatocellular carcinoma in liver transplant candidates.¹ With a history of tumor disease, the risk of relapse may be increased by immunosuppression.² Hence, patients with tumor usually have to be disease-free for 5 years, rendering many patients unfit for transplantation due to age or comorbidities.³ Patients with a history of cancer and dialysis suffer from 2 life-threatening conditions. While a long surveillance for cancer is desirable, a prolonged time on dialysis may reduce the success of a transplantation. Also, a long time on dialysis may increase the risk of developing cancer in itself and accelerates the development of debilitating and finally survival limiting mostly cardio-vascular conditions. Hence, the morbidity and mortality of chronic dialysis may actually supersede the risk of relapse. We established an interdisciplinary patient assessment service to give individual recommendations considering tumor type and stage and weigh the risk of relapse against the morbidity and mortality of dialysis. The panel consisted of an oncologist, a nephrologist, an urologist, a radiologist, a transplant immunologist, and other experts as needed. Dialysis and cancer patients suffer from emotional stress caused by fear of cancer relapse and the burden of dialysis.⁴ They often feel abandoned since professionals may have difficulties in assessing the complexity.

To evaluate acceptance of this service and the patient’s grade of distress and depression, we conducted a survey after the first 31 consecutive patients. We assessed the decision on listing for transplantation, the recommended waiting time, quality of life, and anxiety.

Methods

Patients with cancer seeking a kidney transplantation were invited to our service. The survey consists of a paper–pencil questionnaire to be completed by patients before the counseling and a semi-structured telephone interview 1 week after the counseling. The survey was conducted before the assessment. Questions included patients’ expectations, depression (Patient Health Questionnaire 2),⁵ anxiety (Generalized Anxiety Disorder Questionnaire 2),⁵ distress,⁶ and quality of life (2 questions out of the European Organisation for Research and Treatment of Cancer questionnaire).⁷ Additionally, physicians took a short questionnaire after consultation. One week after the assessment, a psychologist interviewed patients via telephone. Questions were about satisfaction, experiences, and circumstances of the assessment.

We present categorical data by absolute and relative frequencies and compared groups using χ² tests. Continuous variables are presented as means and standard deviations and applied the Mann-Whitney U to compare these groups. In all tests, P < .05 was considered to indicate statistical significance. All calculations were performed using SPSS 21.0 (IBM Corp, Armonk, New York). The study was approved by the ethics committee of the Medical Faculty, Heidelberg University (S-557/2013).

Findings

Thirty-three patients were enrolled between September 2013 and January 2015. Two patients did not sign the informed consent form. The telephone interview was performed 1 week after the assessment with 28 participants. Despite several attempts, 2 patients could not been reached on the phone. Additionally, 1 patient who had an interpreter with her during the visit could not been interviewed in German.

Tumor diagnoses were kidney (n = 17), hematological (n = 4), bladder (n = 3), breast (n = 2), male germ cell (n = 2), skin (n = 2), ovarian (n = 1), prostate (n = 1), rectum (n = 1), and thyroid (n = 1) cancers. Male to female ratio was 75% to 25%, mean age was 56.5 years (Table 1).

Table 1.

Baseline Data, Ratings of the Physicians, and Ratings of the Patients During the Telephone Interview.^a

Baseline Data	Shortened Waiting Time (n = 12)	Regular Waiting Time or No Transplantation (n = 19)	All (n=31)	χ²/U Test P
Sex female	3 (25%)	5 (26%)	8 (26%)	.94
Age	58.6 (9.3); 61.5 (40-73)	55.1 (12.6); 55 (17-72)	56.5 (11.4); 59 (17-73)	.48
Attending with partner	5 (42%)	9 (47%)	14 (45%)	.76
Distress	4.7 (2.7); 4.5 (0-9)	4.5 (2.9); 4 (0-9)	4.6 (2.8); 4 (0-9)	.83
Quality of life (EORTC)	61 (21); 67 (25-83)	63 (20); 67 (25-100)	62 (20); 67 (25-100)	.89
Depression (PHQ-2)	1.4 (1.2); 1 (0-4)	0.7 (1.2); 0 (0-4)	1.0 (1.2); 1 (0-4)	.09
Anxiety (GAD-2)	0.9 (0.9); 1 (0-3)	1.1 (1.4); 1 (0-5)	1.0 (1.3); 1 (0-5)	.83
Ratings of the physicians
The decision was absolutely clear^b	11 (92%)	18 (95%)	29 (94%)	.74
The assessment was successful^b	11 (92%)	13 (68%)	24 (77%)	.13
Patient was psychologically stable	12 (100%)	15 (79%)	27 (87%)	.09
The decision was very well accepted by the patient^b	11 (92%)	7 (37%)	18 (58%)	<.01^c
Patient was				.01^c
Very content	10 (83%)	3 (16%)	13 (42%)
Neutral	2 (17%)	14 (74%)	16 (52%)
Unsatisfied	-	2 (11%)	2 (7%)
Ratings of the patients during the telephone interview	n = 11	n = 17	n = 28
Overall rating	8.1 (1.6); 8 (6-9)	7.6 (1.8); 8 (3-10)	7.8 (1.5); 8 (3-10)	.61
Amount of questions asked	2.7 (2.4); 2.5 (0-6)	2.8 (2.2); 3 (0-8)	2.8 (2.3); 2.8 (0-8)	.21
Estimated duration	14 (7); 12 (5-30)	17 (8); 18 (5-30)	16 (7); 16 (5-30)	.89
Would not recommend	0	1 (8%)	1 (4%)	.41
Could ask enough questions	11 (100%)	15 (88%)	24 (93%)	.24
Duration was				.04^c
Too short	0	5 (29%)	5 (18%)
Too long	0	0	0
Effort of assessment too high compared to its gain	1 (9%)	6 (35%)	7 (25%)	.12
Any negative aspects at all	4 (36%)	6 (35%)	10 (36%)	.95

Abbreviations: EORTC, European Organisation for Research and Treatment of Cancer questionnaire; GAD-2, Generalized Anxiety Disorder Questionnaire 2; PHQ-2, Patient Health Questionnaire 2

^aValues are means (standard deviation); median (range).

^bRating of 9 or 10 on the 0 to 10 scale.

^cSignificant.

In 12 (39%) patients, a shortened time was recommended, and in 16 (52%) patients, a regular waiting time was recommended. Transplantation was declined in 3 (10%) patients. We compared patients groups with shortened to regular waiting time. Both groups did not differ at baseline. Mean distress score was 4.6. This score lies between the means of German oncological patients before (6.2) and after (4.4) rehabilitation.⁶ Mean quality of life score (62) was slightly lower in relation to German women (63) and men (65) between age 50 and 59.⁸ Mean depression and anxiety score was 1.0. This is slightly above the mean values of the general German population (0.9 and 0.8).⁹ Distress, quality of life, depressive symptoms, and anxiety did not differ between groups.

Physicians rated the decision-making process as positive. They also rated patients with regular waiting time more likely unsatisfied and less decision accepting. Those patients were also rated more often as not psychologically stable and that their expectations were not fulfilled, but these differences were not significant.

The overall rating of patient satisfaction was very good (7.8 out of 10). Only 1 patient would not recommend the patient assessment service. Patients especially liked the substantiated and straight information (46%), the higher number of physicians (13%), and the good atmosphere (16%). One patient stated that he was “overwhelmed by the number of physicians caring about him.” All but 2 patients could ask enough questions. The estimated mean duration of 16 minutes and the amount of 3 questions asked did not differ in both groups. When regular waiting time was recommended, 5 (29%) patients would have wished more time for consultation. Eighteen (64%) patients stated at least one point of criticism. Patients complained about the wait time for consultation and problems of finding a parking space. Seven (25%) patients appraised that the effort with several physicians was too high compared to its gain. The results of consultation could have also been told by one single physician or via telephone.

Discussion

The transplantation and cancer service was rated positively by patients and physicians. In 12 (39%) patients, the waiting period until transplant candidate eligibility was shortened. In our survey, the recommendation to shorten the waiting period was perceived entirely positive by our patients. Nineteen (61%) patients received potentially negative information. In 16 patients, the regular waiting time was confirmed, and in 3 patients, transplantation was declined. The questionnaire showed levels of distress, anxiety, depression, and quality of life similar to those of other patients with cancer.^5
–7 Here, both groups did not differ sociodemographically and psychologically. The service received a generally positive feedback. Patients praised the substantiated information, the atmosphere, the duration, and possibility to ask questions.

Negative ratings were about issues unrelated to the consultation like the wait time for the consultation and lack of parking space. Seven patients stated the consultation could have been by telephone or a single physician. These statements may have been due to disappointing results, as 6 (86%) of them came from patients with confirmed regular eligibility waiting time. For these patients, expectations may have not been met, rendering the visit useless. All patients felt they were taken seriously and trusted the information given.

The physicians appreciated the assessment and rated it mainly successful. In more than 90%, they rated their decision as absolutely clear. They rated patients’ satisfaction and decision acceptance regularly lower than in the shortened waiting time group, due to unmet expectations. Especially because of acceptance and satisfaction, this setting is important to us. The service was generally rated positively by patients and physicians.

Conclusions

A patient assessment service for patients with a tumor disease in their history and a renal insufficiency requiring transplantation helps to weigh risk of tumor relapse and risk of not being eligible for transplantation anymore after further extension of time dialysis. Hence, it is a useful strategy to help with decision-making between 2 life-threatening conditions. This strategy also helps physicians to bear negatively associated messages and patients to understand medically wise treatment decisions.

Footnotes

Authors’ Note

The study was not registered, as there was no intervention used to modify a biomedical or health-related outcome. The data sets generated and analyzed during the current study are available from the corresponding author on reasonable request. AI and CG were major contributors in writing the manuscript. AI interviewed patients and analyzed and interpreted data. CG initiated the study and interpreted data. IM and JH built up the framework of the questionnaire and interview and interpreted data. SF, SP, TS, MH, and MZ took part and rated the counseling service. All authors read and approved the final manuscript.

Acknowledgments

The authors thank all participants for making this study possible.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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