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

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.

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 favourably^4,5. 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.

Variable	Value
	(n)	(%)
Profession
Attending physician	37	51
Medical resident or fellow	17	23
Nurse or nurse practitioner	10	14
Clinical researcher	5	7
Medical student	2	3
Other	2	3
Specialty or field
Medical oncology	18	25
Other internal medicine specialty	3	4
Radiation oncology	9	12
Radiology	9	12
General surgery	7	10
Other surgical specialty	18	25
Pathology	3	4
Research	2	23
Other	4	6
Involvement in research using human tissue samples
Yes	31	43
No	42	58
Year of graduation (latest degree)
2010–2018	18	25
2000–2009	19	26
1990–1999	9	12
1980–1989	7	10
1970–1979	5	7
1960–1969	3	4
Other	5	7
No response	7	10
Do patients ask you about donating their body to science or participating in biospecimen research studies?
Often	1	1
Sometimes	11	15
Rarely	23	32
Never	36	49
No response	2	3
Prior to this survey, have you ever heard of rapid tissue donation (also known as rapid autopsy)?
Yes	22	30
No	50	69
No response	1	1
Would you feel comfortable discussing rapid tissue donation with your cancer patients?
Yes	29	40
No	10	14
Not sure	31	43
No response	3	4
Self-rated general knowledge of rapid tissue donation
No knowledge at all	32	44
Limited knowledge	33	45
Somewhat knowledgeable	5	7
Knowledgeable	3	4
Very knowledgeable	0	0
Have you had any experience recruiting patients into a rapid tissue donation program or a similar ethically sensitive procedure?
Yes	3	4
No	69	95
No response	1	1
When should you approach patients about possible participation in a rapid tissue donation program?
At the time of diagnosis	10	14
After first-line therapy	0	0
After second-line therapy	1	1
When there are no treatments available for the patient’s disease or stage	22	30
Patient should not be approached	1	1
Don’t know	21	29
Other	8	11
No response	10	14

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

Factor	Affects decision?
	No, definitely not	No, probably not	Neutral	Yes, somewhat	Yes, definitely	No response	Combined no	Combined yes
								(n)	(%)
Patient’s age	17	21	12	13	7	3	38	20	35
Languages spoken by patient or patient’s family	16	16	13	16	8	4	32	24	43
Patient’s current stage of the disease	9	10	9	17	25	3	19	42	69
Lethality of the cancer	11	9	7	22	21	3	20	43	68
Lethality of cancer in the family	15	8	21	16	9	4	23	25	52
Perceived religious or cultural concerns based on patient’s characteristics	7	10	17	23	13	3	17	36	68
Personal ethical considerations	18	10	14	12	16	3	28	28	50
Socioeconomic status of the patient or family	31	11	20	7	1	3	42	8	16
Current personal knowledge of RTD	3	6	14	18	29	3	9	47	84
Your own religious or ethical reasons	38	10	17	1	4	3	48	5	9
Access to information and patient resources	6	5	21	21	14	6	11	35	76

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

Variable	Value
	(n)	(%)
Language
English	62	61
French	40	39
Age
18–50 Years	20	20
50–75 Years	68	67
≥75 Years	14	14
Sex
Men	19	19
Women	83	81
Highest level of education
High school	31	31
CEGEP	24	24
Bachelor degree	26	26
Master degree	13	13
Doctorate	3	3
Other	4	4
No response	1	1
Primary cancer site
Breast	77	76
Head-and-neck	15	15
Other	9	9
No response	1	1
Current stage
I	11	11
II	14	14
III	15	15
IV	28	27
I do not know	27	26
Other	1	1
No response	6	6
Previous chemotherapy
Yes	72	71
No	27	26
I do not know	2	2
No response	1	1
Previous radiotherapy
Yes	68	67
No	34	33
I do not know	0	0
Previous surgical treatment
Yes	69	68
No	31	30
I do not know	0	0
No response	2	2
Consented to donate tissue to research in the past
Yes	27	36
No	70	69
I do not know	5	5
Discussed donating cancer tissue to research with a doctor
Yes	8	8
No	92	90
I do not know	2	2
Discussed donating cancer tissue to research with family
Yes	11	11
No	90	88
I do not know	0	0
No response	1	1
When is the best time for doctors to approach patients about possible participation in rapid tissue donation?
At time of diagnosis	17	17
After first-line therapy	13	13
After second-line therapy	8	8
When there are no treatment options remaining	34	34
I do not know	21	21
Other	7	7
No response	2	2
Would you feel uncomfortable if your doctor discussed rapid tissue donation with you?
Yes	15	15
No	79	77
I do not know	8	8
Would you like your doctor to discuss rapid tissue donation with you?
Yes	62	61
No	16	16
I don’t know	24	23

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)

Factor	Interested in RTD?
	No, definitely not	No, probably not	Neutral	Yes, somewhat	Yes, definitely	No response	Combined no	Combined yes
								(n)	(%)
Your current RTD knowledge	27	13	20	14	23	5	40	37	48
Stage of your cancer	23	12	19	22	23	3	35	45	56
Having time to think about it and discuss with family	25	9	12	25	27	4	34	52	61
Your relationship with the doctor asking for your consent	25	9	15	32	20	1	34	52	61
Having a conversation about RTD with your doctor to answer your questions	20	9	10	26	35	2	29	61	68
Having access to an information pamphlet about RTD	18	12	13	23	34	2	30	57	66
Having the opportunity to learn about the research that will be performed with your donated tissue	19	7	9	22	44	1	26	66	72
Knowing that your family will receive a handwritten thank-you note several weeks after the tissue donation	28	17	21	15	17	4	45	32	42
The opinions of your family or next of kin	30	18	17	15	18	4	48	33	41
Your own religious considerations	65	12	10	5	8	2	77	13	14
Your own nonreligious ethical considerations	51	14	15	7	11	4	65	18	22

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)

Factor	Comparator	Yes	No	Total	Sum	p Value	Factor	Comparator	Yes	No	Total	Sum	p Value
Factors associated with the response to “Would you feel uncomfortable if your doctor discussed RTD with you?”							Factors associated with the response to “Would you like for your doctor to discuss RTD with you?”
Language	English	8	48	56	0.288671045		Language	English	38	9	47	0.134915978
	French	7	31	38				French	24	7	31
		15	79	94					62	16	78
Age							Age
	<50 Years	3	13	16	0.112122687			<50 Years	12	4	16	0.248569199
	>50 Years	12	66	78				>50 Years	50	12	62
		15	79	94					62	16	78
Sex							Sex
	Women	12	63	75	0.000500999			Women	50	13	63	0.002995392
	Men	3	16	19				Men	12	3	15
		15	79	94					62	16	78
Education							Education
	≤CEGEP	5	42	47	5.258131095	<0.05		≤CEGEP	31	8	39	0.143856144
	≥Bachelor	10	22	32				≥Bachelor	25	8	33
		15	64	79					56	16	72
Primary site							Primary site
	Breast	11	59	70	0.130380117			Breast	46	12	58	0.063172551
	Others	4	17	21				Others	13	4	17
		15	76	91					59	16	75
Stage							Stage
	Stage I–III	6	36	42	0.105544173			Stage I–III	30	7	37	0.041291291
	Stage IV	3	23	26				Stage IV	15	3	18
		9	59	68					45	10	55
Chemotherapy							Chemotherapy
	Yes	8	61	69	4.487157287	<0.05		Yes	49	7	56	9.365416667	<0.05
	No	7	16	23				No	11	9	20
		15	77	92					60	16	76
Radiation							Radiation
	Yes	10	51	61	0.024628941			Yes	40	11	51	0.100727388
	No	5	28	33				No	22	5	27
		15	79	94					62	16	78
Surgery							Surgery
	Yes	11	51	62	0.287952334			Yes	40	14	54	2.665544332
	No	4	26	30				No	20	2	22
		15	77	92					60	16	76
Previous donation							Previous donation
	Yes	6	20	26	1.081730769			Yes	16	4	20	0.042528736
	No	9	55	64				No	42	12	54
		15	75	90					58	16	74

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)

Factor	Affects a decision to consent to RTD?
	No, definitely not	No, probably not	Neutral	Yes, somewhat	Yes, definitely	No response	Combined no	Combined yes
								(n)	(%)
Your current RTD knowledge	27	13	20	14	23	5	40	37	48
Stage of your cancer	23	12	19	22	23	3	35	45	56
Having time to think about it and discuss with family	25	9	12	25	27	4	34	52	61
Your relationship with the doctor asking for your consent	25	9	15	32	20	1	34	52	61
Having a conversation about RTD with your doctor to answer your questions	20	9	10	26	35	2	29	61	68
Having access to an information pamphlet about RTD	18	12	13	23	34	2	30	57	66
Having the opportunity to learn about the research that will be performed with your donated tissue	19	7	9	22	44	1	26	66	72
Knowing that your family will receive a handwritten thank-you note several weeks after the tissue donation	28	17	21	15	17	4	45	32	42
The opinions of your family or next of kin	30	18	17	15	18	4	48	33	41
Your own religious considerations	65	12	10	5	8	2	77	13	14
Your own nonreligious ethical considerations	51	14	15	7	11	4	65	18	22

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 separately^4,6; 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.

APPENDIX A. CONSOLIDATED CRITERIA FOR REPORTING QUALITATIVE RESEARCH 32-ITEM CHECKLIST

Domain 1: Research team and reflexivity
Personal characteristics
1	Interviewer or facilitator	Which author or authors conducted the surveys?	Matthew Dankner
2	Credentials	What were the researcher’s credentials?	Medical student and medical resident
3	Occupation	What was their occupation at the time of the study?	Medical student and medical resident
4	Gender	Was the researcher male or female?	Male
5	Experience and training	What experience or training did the researcher have?	Medical school training, basic ability to interact with patients
Relationship with participants
6	Relationship established	Was a relationship established prior to study commencement?	No
7	Participant knowledge of the interviewer	What did the participants know about the researcher?	That interviewers were trainees involved in this research project with their medical oncologist
8	Interviewer characteristics	What characteristics were reported about the interviewer or facilitator?	Both interviewers were white males in the 25–30 demographic
Domain 2: Study design
Theoretical framework
9	Methodological orientation and theory	What methodological orientation was stated to underpin the study?
10	Sampling	How were participants selected?	HCPs: selected on basis of being at tumour board meetings Patients: selected on basis of being patients of Dr. Bouganim or Dr. Asselah and present at the MUHC oncology clinic waiting room
11	Method of approach	How were participants approached?	HCPs: all attendees at tumour board meetings Patients: selected if they were patients of Dr. Bouganim and Dr. Asselah present at the MUHC Oncology clinic waiting room
12	Sample size	How many participants were in the study?	73 HCPs, 102 patients
13	Nonparticipation	How many people refused to participate or dropped out? Reasons?	HCPs: no refusals Patients: 11 refusals (1 because of language, 1 not feeling up to completing the survey, 9 general refusals)
Setting
14	Setting of data collection	Where were the data collected?	MUHC HCPs: at tumour board meetings Patients: in the waiting room of the Oncology clinic before an appointment with their medical oncologist
15	Presence of nonparticipants	Was anyone else present besides the participants and researchers?	Patients were frequently accompanied by friends or loved ones
16	Description of sample	What are the important characteristics of the sample?	HCPs: those present at tumour board meetings, selecting for those with roles in cancer patient care Patients: those who had appointments on the given day at the MUHC Oncology clinic
Data collection
17	Interview guide	Were questions, prompts, guides provided by the authors? Was it pilot tested?	HCPs: the survey was introduced by Matthew Dankner as a survey to determine the level of interest of HCPs in bringing a RTD program to the MUHC, and to educate them about it Patients: the survey was introduced as assessing the attitudes and opinions of patients to determine whether a future research program will be initiated at the MUHC that would be similar to organ donation except that it would be specific for cancer patients, whereby they would have the opportunity to donate tissues to research in the event that they pass away from their cancer
18	Repeat interviews	Were repeat interviews carried out? If yes, how many?	No
19	Audio or visual recording	Did the research use audio or visual recording to collect the data?	No
20	Field notes	Were field notes made during and after the interview or focus group?	No
21	Duration	What was the duration of the interviews or focus group?	Not applicable; took as long as participants needed to complete the survey, typically 5–10 minutes
22	Data saturation	Was data saturation discussed?	No
23	Transcripts returned	Were transcripts returned to participants for comment and correction?	No
Domain 3: Analysis and findings
Data analysis
24	Number of data coders	How many data coders coded the data?	Not applicable; data were pre-coded
25	Description of the coding tree	Did authors provide a description of the coding tree?	Yes: the entirety of both surveys are provided
26	Derivation of themes	Were themes identified in advance or derived from the data?	Derived from the data
27	Software	What software, if applicable, was used to manage the data?	Google Forms (Google Inc., Mountain View, CA, U.S.A.)
28	Participant checking	Did participants provide feedback on the findings?	No
Reporting
29	Quotations presented	Were participant quotations presented to illustrate the themes or findings? Was each quotation identified?	No
30	Data and findings consistent	Was there consistency between the data presented and the findings?	Yes
31	Clarity of major themes	Were major themes clearly presented in the findings?	Yes
32	Clarity of minor themes	Is there a description of diverse cases or discussion of minor themes?	Yes

HCP = health care provider; MUHC = McGill University Health Centre; RTD = rapid tissue donation.