A survey of health care professionals and oncology patients at the McGill University Health Centre reveals enthusiasm for establishing a postmortem rapid tissue donation program

Perspectives in Oncology


A survey of health care professionals and oncology patients at the McGill University Health Centre reveals enthusiasm for establishing a postmortem rapid tissue donation program


M. Dankner, BSc*, J. Senecal, BSc*, N.S. Neubarth*,, N. Bertos, PhD§, M. Park, PhD*,§,||#, B. Issa-Chergui, MD||**, J. Asselah, MD**††, P.M. Siegel, PhD*,,,§#, N. Bouganim, MD**††



doi: http://dx.doi.org/10.3747/co.26.4771


ABSTRACT

Background

In the early developmental phase of a postmortem rapid tissue donation (rtd) program for patients with metastatic cancer, we surveyed health care professionals (hcps) and oncology patients at the McGill University Health Centre (muhc) to assess their knowledge and attitudes pertaining to rtd from metastatic cancer patients for research purposes.

Methods

A 23-item survey was developed and distributed to hcps at tumour board meetings, and a related 26-item survey was developed and distributed to oncology patients at the muhc Cedars Cancer Centre.

Results

The survey attracted participation from 73 hcps, including 37 attending physicians, and 102 oncology patients. Despite the fact that 88% of hcps rated their knowledge of rtd as none or limited, 42% indicated that they would feel comfortable discussing rtd with their cancer patients. Of the responding hcps, 67% indicated that their current knowledge of rtd would affect their decision to discuss such a program with patients, which implies the importance of education for hcps to facilitate enrolment of patients into a rtd program. Of responding patients, 78% indicated that they would not be uncomfortable if their doctor discussed rtd with them, and 61% indicated that they would like it if their doctor were to discuss rtd with them. The hcps and patients felt that the best time for patients to be approached about consenting to a rtd program would be at the transition to palliative care when no treatment options remain.

Conclusions

At the muhc, hcps and patients are generally enthusiastic about adopting a rtd program for patients with metastatic cancer. Education of hcps and patients will be an important determinant of the program’s success.

KEYWORDS: Rapid tissue donation, rapid autopsy, warm autopsy

INTRODUCTION

Rapid tissue donation (rtd), also known as rapid autopsy, is an organized program for acquiring metastatic tumour tissue for research purposes in a postmortem setting1. Rapid tissue donation involves the removal of metastatic tissue within 12 hours of death2. Tissues acquired through rtd differ from surgical or biopsy specimens that are often acquired before treatment and come from a single tumour site3. The rtd tissue comes from a number of metastatic sites and can include normal-tissue control specimens. The tissues can also be matched to samples collected at earlier times in a patient’s cancer history.

Given the imperative for the cancer research community to achieve a greater understanding of the mechanisms of therapeutic resistance, interactions between cancer cells and the tumour microenvironment, and intra- or inter-tumour heterogeneity, rtd tissue is of unequivocal value in driving discoveries that will ultimately benefit cancer patients1.

Previous studies have demonstrated that patients in a U.S. setting generally view rtd favourably4,5. As the first stage in an effort to establish a rtd program for patients with metastatic cancer at the McGill University Health Centre (muhc), we used surveys completed by health care professionals (hcps) and oncology patients at the muhc to determine whether those hcps and patients would be similarly open to participating in such a program. The surveys assessed respondent attitudes, knowledge, and opinions about rtd. Here, we report the findings from the surveys and discuss their relevance for establishing a viable rtd program at our institution.

METHODS

HCP Surveys

We conducted hardcopy paper surveys to assess the knowledge and attitudes of hcps about rtd. Surveys for hcps were adapted from a similar Moffitt Cancer Centre survey, with that organization’s approval6. Item generation was performed by the lead and senior authors, and pre-testing was performed with the co-authors. After review and approval of the study by the muhc research ethics board (no. 2018-3304), copies of the survey (Table I) were distributed to hcps at tumour board meetings. Before the tumour board session began, the survey was briefly introduced verbally by the lead author of the study, outlining the goals for the survey, as well as the broader initiative to establish a rtd program for research purposes. Hard copies were handed out to all attendees at the session. Using this chunk sampling approach, a representative group of hcps who work in areas related to oncology were selected7. Responses were collected immediately after the tumour board session. All individuals who were given a survey returned a completed version (100% response rate). All hcp surveys were completed between July 2017 and July 2018.

TABLE I Rapid tissue donation survey for health care providers


 

Patient Surveys

We conducted hardcopy paper surveys to assess the knowledge and attitudes of patients about rtd. Surveys for patients were modified from the hcp survey described in the preceding subsection. Item generation was performed by the lead and senior authors, and pre-testing was performed with the co-authors. After review and approval of the study by the muhc research ethics board (no. 2018-3304), copies of the survey were distributed to consecutive patients attending the Friday morning oncology clinics of two medical oncologists, before their appointments. The survey was briefly introduced verbally by the lead author of the study in the patient’s preferred language (English or French), outlining the goals for the survey, as well as the broader initiative to establish a rtd program for research purposes. Hard copies of the survey (Table II) were given to patients in their language of choice (English or French) to be completed and returned in the waiting room. Using this chunk sampling approach, a representative group of oncology patients was obtained. Of 113 patients approached and asked to complete the survey, 11 refused to participate (1 because of a language barrier, 1 because of acute illness, 9 for unspecified reasons), for a 90% response rate. All patient surveys were completed between September and October 2018.

TABLE II Rapid tissue donation survey for patients


 

Survey Analysis

The Pearson 2-way chi-square test was used in the statistical analyses.

The Consolidated Criteria for Reporting Qualitative Research 32-item checklist for interviews and focus groups is presented in Appendix a, making reference to both the hcp and patient surveys.

RESULTS

HCP Survey

Table III shows the characteristics of the 73 hcps surveyed during tumour board sessions and their attitudes and knowledge pertaining to rtd. The group included attending physicians; trainees such as medical students, residents, and fellows; nurses; and clinical researchers. The most common specialties among the hcps surveyed were medical oncology, radiation oncology, and surgery. Most participants (69%) had not heard of rtd before completing the survey, and yet 40% indicated that they would feel comfortable discussing rtd with their patients. Having been asked when patients should be approached about possible participation in a rtd program, hcps most frequently felt that patients should be approached when no treatments were available (30%).

TABLE III Characteristics and attitudes of 73 surveyed health care providers.

 

Table IV shows the factors that would affect a decision by a hcp to discuss rtd with a patient. The hcps indicated that their current rtd knowledge was the most important factor in determining whether they would approach a patient to discuss rtd (84%).

TABLE IV Factors that affect a health care provider’s decision to discuss rapid tissue donation (RTD) with a patient

 

Because attending physicians would be the primary individuals discussing rtd with patients, we investigated the responses of attending physicians as a subgroup. Although 54% of that subgroup indicated that they had never heard of rtd before the survey, 53% responded that they would be willing to discuss rtd with patients. Attending physicians generally viewed their current level of rtd knowledge as being important in determining whether they would discuss rtd with a patient (57%).

Patient Surveys

Table V shows the characteristics and attitudes of the surveyed oncology patients. The 102 oncology patients who participated were drawn from among the consecutive patients attending the clinics of medical oncologists who routinely see patients with primary breast (76%) or headand-neck cancers (15%). Those tumour types were chosen specifically because of the contrasting patient participation in research in those disease settings. Breast cancer research is heavily funded and marketed to patients; head-and-neck cancer research is not.

TABLE V Characteristics and attitudes of 102 surveyed oncology patients

 

Table VI shows the factors associated with patient interest in rtd. A great proportion of patients would not feel uncomfortable if their doctor discussed rtd with them (77%) and would like their doctor to discuss rtd with them (61%). In agreement with the responses provided by hcps, patients also felt that the best time for doctors to approach patients to discuss participation in rtd would be the point at which no treatment options remain (34%).

TABLE VI Factors associated with patient interest in rapid tissue donation (RTD)

 

Table VII shows the 2-way chi-square analysis of factors associated with a patient response of discomfort if their doctor discussed rtd with them and whether they would like their doctor to discuss rtd with them. Patients who had previously received chemotherapy were significantly less likely to be uncomfortable if their doctor discussed rtd with them and were more likely to want their doctor to discuss rtd with them (p = 0.0342). Patients with a higher level of education (bachelor degree or higher) were significantly more likely to be uncomfortable if their doctor discussed rtd with them (p = 0.0265).

TABLE VII Factors that affect the patient decision to consent to rapid tissue donation (RTD)

 

Table VIII shows factors that affect a patient’s decision to consent to rtd. Patients most frequently stated that having the opportunity to learn about the research that will be performed with their donated tissue would be important in their decision (72%). That finding again mirrors the responses provided by hcps, who stated that their knowledge of rtd would be most important in their decision to discuss rtd with patients.

TABLE VIII Factors that affect the patient’s decision to consent to rapid tissue donation (RTD)

 

DISCUSSION

We initiated this study with the intention of developing a greater understanding of the opinions, attitudes, and knowledge about rtd among hcps and patients at our institution. Previous studies surveyed hcps and patients about rtd separately4,6; our survey is the first to provide hcps and patients with a similar survey, allowing for comparisons between those two important groups. When comparing responses between hcps and patients, it became abundantly clear that both groups are not well educated about rtd and that further education will be necessary before engaging in a rtd program. Our results demonstrate that, although hcps have little knowledge or experience with rtd, many are willing to discuss it with patients. Similarly, patients viewed rtd equally favourably, while sharing many of the same concerns expressed by hcps.

Based on the fact that many hcps indicated a desire to learn more about rtd before they would be willing to consent patients, we expect compliance among hcps to be high after information or education sessions are established to teach hcps about rtd. An opportunity to learn about rtd is especially important in light of the fact that, when engaged clinicians have meaningful and informed conversation with their patients, consent rates for postmortem organ donation improve8.

Once a rtd program is established, and hcps are educated about the program, patients will be educated about rtd through an information pamphlet about the program and through discussion with their medical oncologist. Patients indicated the importance of education about rtd in their survey responses: 68% indicated that having an information pamphlet would be important in their decision to consent to rtd.

Interestingly, although patients who had previously received chemotherapy seemed to be more interested in consenting to a rtd program, other factors (such as disease stage) were not correlated with patient discomfort about rtd or with a desire to have their doctor discuss it with them. Those results suggest that there is likely no way to use patient factors to predict how a patient might respond to a discussion about rtd. Rather, clinicians must use personal judgment based on a patient’s attitudes and relationship with them to determine whether the patient is approachable about rtd. Alternatively, consent for rtd can be driven by providing patients with information pamphlets about the program together with a prompt to discuss rtd with their clinician if they are interested. In that way, oncologists need not even be mandated to discuss rtd with patients unless the conversation is initiated by patients themselves.

CONCLUSIONS

Taken together, our results demonstrate that rtd is viewed favourably by most hcps and patients, paving the way for implementation of a rtd program at the muhc.

ACKNOWLEDGMENTS

We are grateful for Carole Leboeuf’s help with patient recruitment. We thank Gwendolyn Quinn for helpful discussions about initiating a rtd program and for providing the Moffitt Cancer Centre survey modified for use in the study. We acknowledge Nicholas Meti for help with a subset of patient surveys. Most importantly, we thank the study participants for taking the time to participate.

CONFLICT OF INTEREST DISCLOSURES

We have read and understood Current Oncology’s policy on disclosing conflicts of interest, and we declare that we have none.

CONSOLIDATED CRITERIA FOR REPORTING QUALITATIVE RESEARCH 32-ITEM CHECKLIST

APPENDIX A




 

AUTHOR AFFILIATIONS

*Goodman Cancer Research Centre, Montreal, QC,
Department of Experimental Medicine, McGill University, Montreal, QC,
Department of Anatomy and Cell Biology, McGill University, Montreal, QC,
§Research Institute of the McGill University Health Centre, Montreal, QC,
||Department of Pathology, McGill University, Montreal, QC,
#Department of Biochemistry, McGill University, Montreal, QC,
**Cedars Cancer Centre, Montreal, QC,
††McGill University Health Centre, Montreal, QC.

REFERENCES

1 Alsop K, Thorne H, Sandhu S, et al. A community-based model of rapid autopsy in end-stage cancer patients. Nat Biotechnol 2016;34:1010–14.

2 Fan J, Khanin R, Sakamoto H, et al. Quantification of nucleic acid quality in postmortem tissues from a cancer research autopsy program. Oncotarget 2016;7:66906–21.

3 Lindell KO, Erlen JA, Kaminski N. Lessons from our patients: development of a warm autopsy program. PLoS Med 2006;3:e234.

4 Achkar T, Wilson J, Simon J, Rosenzweig M, Puhalla S. Metastatic breast cancer patients: attitudes toward tissue donation for rapid autopsy. Breast Cancer Res Treat 2016;155:159–64.

5 McIntyre J, Pratt C, Pentz R, Haura EB, Quinn GP. Stakeholder perceptions of thoracic rapid tissue donation: an exploratory study. Soc Sci Med 2013;99:35–41.

6 Schabath MB, McIntyre J, Pratt C, et al. Healthcare providers’ knowledge and attitudes about rapid tissue donation (rtd): phase one of establishing a rapid tissue donation programme in thoracic oncology. J Med Ethics 2014;40:139–42.

7 Burns KE, Duffett M, Kho ME, et al. A guide for the design and conduct of self-administered surveys of clinicians. CMAJ 2008;179:245–52.

8 Williams MA, Lipsett PA, Rushton CH, et al. on behalf of the Council on Scientific Affairs, American Medical Association. The physician’s role in discussing organ donation with families. Crit Care Med 2003;31:1568–73.


Correspondence to: Nathaniel Bouganim, McGill University Health Centre, Cedars Cancer Centre, 1001 Decarie Boulevard, Montreal, Quebec H4A 3J1. E-mail: nathaniel.bouganim@mail.mcgill.ca

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CONFLICT OF INTEREST DISCLOSURES

We have read and understood Current Oncology’s policy on disclosing conflicts of interest, and we declare that we have none. ( Return to Text )


Current Oncology, VOLUME 26, NUMBER 4, August 2019








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