There is a wide disconnect between patients and the pathologists who make their diagnoses. Recent literature highlights successful programs in which patients meet with pathologists to review their pathology reports and see their tissue under a microscope. We do not know how many patients are interested in such a service, nor do we understand what drives interested patients to want to meet with their pathologist and what specific value it may provide.
To quantify patient interest in a patient-pathologist consultation program and qualitatively assess motivations for patient interest or disinterest.
Subjects were recruited from an academic cancer center and a local community cancer support group to respond to a survey about their interest in a patient-pathologist consultation program. Both online forms and paper surveys were available. The online survey was promoted via social media.
There was a high level of patient interest, with 75% of respondents indicating they were definitely interested in a patient-pathologist consultation program. Key themes of interest were enhanced understanding of the diagnosis and disease, an opportunity to demystify the diagnostic process, and the perception that additional knowledge would empower the patient.
In a select group of cancer patients, there is a very high level of interest in a patient-pathologist consultation program. Pathologists, clinicians, and hospital leadership should work together to pilot these programs in diverse settings. Additional quantitative work to scale interventions for the interested population and qualitative work to design effective, patient-centered consultation programs and to assess value are needed.
Each year there are more than 1.7 million new diagnoses of cancer in the United States.1 These diagnoses are made almost entirely by pathologists who evaluate glass slides containing tissue or cells from biopsies, needle aspirations, or resection specimens and issue a written report. The process of moving from tissue sampling to diagnosis is entirely separate from the patient's experience. Often patients have never heard of a pathologist, and it is rare for patients to have an opportunity to talk with the pathologist who made their diagnosis or to see their tissue under a microscope.
A new diagnosis of cancer brings acute emotional distress and numerous questions for both the patient and the patient's family.2–5 Often, patients cope by seeking information and developing a plan of action.2,6–8 The patient care team is an essential source of information for these patients and families, especially at the time of initial diagnosis9 ; however, “patients report dissatisfaction with the amount and type of information they are given about their diagnosis” and “health providers often fail to communicate information effectively, in ways that are understandable to and enable action by patients.”10 A patient-pathologist consultation program, where interested patients have the opportunity to meet with a pathologist and view microscopic and gross images of their tumor, may be a useful tool for communicating and enabling action for some cancer patients.
At our institution, patients and family members serving as advisor-members of our pathology department's Patient and Family Advisory Council have expressed strong interest in having access to the slides of their cancer and meeting with a pathologist to further discuss their pathology report. Thought leaders in pathology have identified direct communication between pathologists and patients as a serious need, and efforts have been made to create online resources for patients and to make pathology reports more readable for patients.11–13
There are very few published data on patient-pathologist consultation programs and only a few reports of hospitals giving patients an opportunity to meet with their pathologist.14–17 Dr Lija Joseph's group at Lowell General Hospital recently established a formal patient-pathologist consultation program that has been well received with more patient interest than expected.17 Anecdotal evidence suggests that clinicians, surgeons, and hospital leadership have mixed responses to the idea of a patient-pathologist consultation program, and there are mixed opinions on whether or not this is actually a program patients would want. Another common concern is how such services would be reimbursed, should they become available.11 Without established quantification of overall patient interest, it is difficult to advocate for resources to be devoted to study the efficacy of this type of program.
This study is the first to quantify patient interest and to qualitatively understand motivations for patient interest or disinterest in a patient-pathologist consultation program. Quantification of interest will allow us to determine if there is significant patient interest in the program. Qualitative analysis of motivations for interest will help us to understand how the program might provide benefit for cancer patients. Qualitative analysis will also help us to understand patient-specific barriers to the creation of this program.
MATERIALS AND METHODS
Participants and Sampling
This study was part of a quality improvement project and was deemed exempt and not regulated by the institutional review board (HUM00144372). Participants were recruited through a partnership with our institution's cancer center and a local cancer support community. Individuals attending the support groups were given the option to fill out the survey via paper survey cards; support group leaders recorded the number of people in the group and the number of cards returned.
In addition to the paper surveys, an online version of the survey was produced using Qualtrics survey software. Both our institution's cancer center and the local community center cancer support community posted an online version of the survey via social media (Facebook and Twitter). The survey instruments used online and the paper cards were identical (Figure 1). All responses were collected in English. Both online participants and paper participants could have been members of a support group, but the paper participants were actually attending a support group when they filled out the survey.
The survey contained both quantitative demographic questions and open-ended questions designed to capture the participant's cancer diagnosis and why a person with cancer might or might not be interested in meeting with a pathologist. Cancer diagnosis data were coded freehand and grouped into several high-level categories (ie, breast cancer, prostate cancer, gynecologic cancer, leukemia/lymphoma, etc). Types of cancer reported by less than 2% of participants were lumped together in an “Other” category for analysis. The quantitative questions were cleaned and coded using the statistical analysis software STATA version 15 (StataCorp, College Station, Texas). Bivariate analysis, including χ2 and bivariate linear regression, as well as multiple linear regression was used to determine if age, gender, and cancer type predicted interest level.
Qualitative analysis for the open-ended answer to the “why” question—why a person with cancer might or might not be interested in meeting with a pathologist (see Figure 1)—followed the methodology used by Abelson et al6 in their analysis of coping strategies among colorectal cancer patients. Each participant response was read and coded by 2 researchers. One was a pathologist with a background in public health who has taken courses on mixed-methods research and the other was a researcher with a background in qualitative analysis. Using an open-coding approach, they independently coded the first 10 responses and then met as a pair to resolve differences in coding. The remainder of responses were then coded and the pair met to resolve any additional differences in coding. Themes were developed using grounded theory18 to explain patients' interest or lack thereof in the patient-pathologist consultation program. All open-ended responses were then rereviewed to look for exemplary quotes from each theme.
A total of 100 responses were received (58 responses from the online survey and 42 from the paper survey). The majority of the survey participants were female (73 of 100; 73%), with an average age of 54.4 years (Table 1). The top cancer diagnoses among participants were breast (29 of 100; 29%), prostate (10 of 100; 10%), and gynecologic (9 of 100; 9%) (Table 1). The vast majority of respondents (85 of 100; 85%) indicated they were either definitely interested (75 of 100; 75%) or interested (10 of 100; 10%) in meeting with a pathologist who is familiar with their diagnosis to discuss their pathology report and to see a microscopic slide of their tissue. Only 7 of 100 respondents (7%) indicated no interest in this type of service (Figure 2).
Paper survey participants, that is, those participants who filled out their survey while attending a support group, were on average older (average age 63.8 years paper versus 47.6 years online) and more likely to be male (20 of 42 [48%] male paper versus 7 of 58 [11%] male online). Interest level also differed between paper and online participants. The vast majority of the online participants, 57 of 58 (98%), were definitely interested or interested, compared with only 28 of 42 paper participants (67%). Of the 7 participants not interested in the program, 6 were from the paper survey group.
In bivariate analysis there was no association between gender or cancer type and interest level. There was a significant association between age and interest level, whereby increasing age was associated with decreased interest level (P = .02). In multivariate analysis including age, gender, and cancer type, age remained a significant predictor of interest level (P = .02); however, when survey type was added to the analysis, age was no longer a significant predictor. Survey type (ie, participants who filled out paper surveys in their support group versus those who completed the survey online) is likely a confounder as the participants who filled out the paper survey were significantly older (P < .001) and included the majority (6 of 7; 85.7%) of the participants who were not interested in the survey.
The response rate for the paper surveys collected at the local cancer support community was 86% (42 of 49 support group attendees), and the responses were collected between April 17 and July 11, 2018. Online responses were collected from April 17 through May 9, 2018. The local cancer support group posted the survey on Facebook on April 17, 2018, and our institution's cancer center posted the survey on Twitter on April 27, 2018. The majority of online responses were received between April 27 and May 1, 2018.
Motivations for Interest
Three major themes emerged in assessing patients' motivation for interest in the patient-pathologist consultation program: (1) a perception that seeing tissue and talking with a pathologist would be empowering, (2) an interest in demystifying the process of pathology diagnosis, and (3) a desire for enhanced understanding.
The definition of empower is “to make (someone) stronger and more confident, especially in controlling their life and claiming their rights.”19 This theme was identified from a variety of statements where people believed that seeing their tissue and/or talking with a pathologist would bring them a sense of power or control over the disease or disease process. “Knowledge is power” was mentioned several times. Other respondents perceived that there would be an emotional response to getting the added knowledge from a pathologist, stating, “Having knowledge helps me focus and stay calm…I feel more grounded when I have facts. That groundedness makes me feel stronger and ready to fight” (Table 2).
The process of pathology is largely unknown to patients, and there seemed to be a sense that “demystifying,” or making pathology clearer and easier to understand, would be useful for patients. This theme was identified in 2 different subsets of comments. The first subset was about demystifying the process of diagnosis, that is, how the patient's tissue was processed by the pathologist, made into slides, looked at under the microscope, and then diagnosed. One participant commented, “I've always found the world of pathology mysterious. Would love to see how they do what they do, especially with my own tissue.” The second subset was about demystifying the patient's specific diagnosis, that is, the wording and content of the patient's specific pathology report. One participant commented, “I still don't know what all the wording on my path says, would be nice to be able to have someone explain it.” In this subset there were also participants who mentioned that their surgeon or oncologist had trouble explaining some of the information in the pathology report, and thus these participants expressed interest in speaking with a pathologist to clarify their questions. This subset also included participants whose grading of tumor changed from one institution to another, which raised questions about the process of pathologic diagnosis and trust in the diagnosis (Table 2).
In addition to the themes of demystification and empowerment, there was also a general sense that meeting with a pathologist and seeing a microscopic slide of the tumor would lead to an enhanced understanding that would be useful. Participants' replies included “I think it would help me understand exactly where and what my cancer was.” There was a sense from many participants that this was an area of curiosity, and that they hoped that in seeing their pathology and talking to a pathologist they might better understand their cancer. These participants seemed to view knowledge as something useful in the process of coping with their cancer diagnosis and disease (Table 2).
Themes in Not-Interested Respondents
The reasons cited by the respondents who were definitely not interested or not interested in the program included a treated tumor, concern for costs, concern that the information might be overwhelming, and a feeling that the clinical physician had provided the information they need. The sentiment of fear of the information and concern that it might be overwhelming or confusing was echoed in several of the respondents who were not really interested or slightly interested. The concern for costs was also echoed among other less-interested participants. There were also 2 patients who noted they had their care at a different institution so they did not think they would be eligible to see their slides through our institution's program.
There was a high level of interest in a patient-pathologist consultation program within our survey population, and this is the first time interest in a patient-pathologist consultation program focused on cancer patients has been documented. This high level of interest is in keeping with reports from others who have offered these programs at their institutions. In the pilot program at Lowell General, Booth et al17 reported they expected that 2 or 3 patients per year would come to pathology to review their case; however, they had 31 patients in their first year. Smith et al14 piloted a patient-pathologist consultation program within a hematology-oncology clinic, and of the 16 patients offered the consultation, 100% were interested in meeting with a pathologist to review their slides and talk about their report.
Level of interest did not differ significantly by gender or cancer type. There was a small but significant association between increasing age and decreasing interest level, but this effect was likely confounded by differences in the groups of participants who filled out the paper survey and the online survey. The online respondents were recruited from the same sources (ie, institutional cancer center and local cancer support group) and either may or may not have been active participants in support groups, but the paper responders filled out their survey as part of a support group. People actively in support groups may perceive they already have the information, social support, and resources they need to cope, and thus have less interest seeing their pathologist as a resource for coping. The people actively in the support groups may have also had their cancer longer, as several people noted in their qualitative responses that they would have been interested at the time of diagnosis, but now they were not.
Our qualitative analysis helps to shed light on why meeting with a pathologist and seeing one's tumor has potential benefit and value to cancer patients. Our overall participant response tells us that patients perceive meeting with a pathologist as a potentially empowering interaction that would allow them to demystify the process of pathologic diagnosis and would enhance their understanding of their disease and their diagnosis. Information exchange can lead to understanding, satisfaction, trust, and feeling “known,” and it is an important part of the pathway to improving trust in the medical system, making quality medical decisions, and adhering to treatment.9,20 Empowerment and other forms of patient agency like self-efficacy and enablement can lead to improved treatment adherence, health habits, and self-care.9
The sentiments expressed by our participants have been echoed in other patient-centered pathology research. In the Lowell General program, one participant commented, “I know I'm about to embark on a long journey, please help me see the dragon that I am slaying,”17 calling to the theme of empowerment that can be given by seeing a visual representation of one's tumor. Another study of pathologists' online support groups showed that pathologist involvement led to both improved overall understanding and a decrease in participant anxiety.21 News reports of patients seeking out pathologists highlight stories of patients who found great comfort in seeing their tumor, and even one patient who later did art therapy with her tumor image.16,22
Many questions still remain regarding patient-pathologist consultation programs, including the following: How would the treating physician feel about this type of service? Would pathologists be interested in participating? Do pathologists have the appropriate skills to communicate pathology to patients? Do we really need to add another bill to the already costly care for cancer patients?
Careful research and study of patient-pathologist consultation programs will be necessary to assess these areas, but review of the literature can provide some preliminary understanding. Early work from Booth et al17 and Smith et al14 shows that treating physicians can be enthusiastic partners in a patient-pathologist consultation program. Smith et al14 reported that in their partnership of pathologists with hematologist-oncologists in a lymphoma clinic, all treating physicians surveyed found the presence of the pathologist to be helpful for answering questions about the pathologic diagnosis and for patient education. Booth et al17 reported that the oncology team was grateful for the service, commenting, “An enhanced patient experience!” Future studies and focus groups of treating physicians may be helpful in understanding an optimal structure for partnering with treating physicians for this service.
Pathologist interest has yet to be quantified; however, social media indicates some popularity with the rise of groups such as #patientcenteredpathology and #visiblepathologist on Twitter. Additionally, there is currently a multi-institutional collaboration of 21 interested pathologists from 17 different hospitals and academic medical centers across the United States, all of whom are interested in implementing and evaluating patient-pathology consultation programs23 (R. Jug, MB BCh BAO, email communication, April 4, 2019). Pathologists may need and/or desire directed training and feedback in preparation for regular patient communication. Gibson et al11 outline a path whereby interested pathologists would become certified pathologist navigators through directed training and certification programs.
The issue of cost ultimately must be answered by thinking critically about the value and efficacy of seeing one's tumor and fully understanding one's pathology and diagnosis. A patient-pathologist consultation program must be studied like any other intervention to determine if it is effective in improving health outcomes and if it adds value. Street et al20 have developed a robust conceptual model highlighting the direct and indirect links between communication and health outcomes. Figure 3 presents an adapted conceptual model, highlighting potential mechanisms by which a patient-pathologist consultation program could be a type of patient-centered communication tool that could lead to improved health outcomes. Based on our qualitative results, we theorize that a patient-pathologist consultation program could provide value by improving information exchange (through enhanced understanding), could help patients manage uncertainty (through demystifying the process of diagnosis and enhanced understanding), and could enable patient self-management (through empowering), all of which are key components in the path from patient-physician communication to health outcomes (Figure 3).9,20 These functions can lead to proximal outcomes like trust, feeling known, and feeling involved that can improve patients' commitment to treatment and their ability to make quality medical decisions.20
Patient-centered communication has been shown to ease anxiety and distress,24,25 lower blood pressure,26 and improve quality of life.20,27,28 The patient-pathologist consultation is a unique form of patient-centered communication whereby patients are able to visually interact with their tumor. Visual communication has been shown to be an effective way to improve risk communication and increase treatment adherence. A recent randomized controlled trial by Näslund et al29 showed that giving patients with asymptomatic atherosclerotic disease a picture of their carotid artery ultrasound led to significant reductions in their risk factor burden. A patient-pathologist consultation could be an effective tool for behavior change (eg, reducing alcohol consumption after a liver transplantation by showing a patient his or her explanted liver with hepatocellular carcinoma), improving treatment decisions (eg, choosing lumpectomy over mastectomy in early-stage breast cancer30 ), improving follow-up (eg, continuing regular screenings for women with squamous intraepithelial cervical lesions), or improving treatment adherence (eg, finishing course of tamoxifen in women with ER-positive breast cancer). The patient-pathologist consultation program could also be an effective intervention for improving communication among pathologists, surgeons, oncologists, and radiologists if it were incorporated into multidisciplinary clinics.
Answering questions of efficacy will lead to an understanding of whether or not potential costs (including physician reimbursement for this type of activity) are justifiable. Patient-pathology consultations must be evaluated in depth using robust qualitative and quantitative longitudinal studies within diverse populations to truly understand if and how this tool could best be used to improve patient outcomes. Feasibility studies with key stakeholders like treating physicians, pathologists, and hospital administration should be completed in parallel, as piloting patient-pathologist interactions will be reliant on the support of and positive interaction within these groups.
Survey recruitment from social media and support groups in the community biases toward patients with strong interest. We also do not know what the response rate is from the online community because we are not sure how many people saw the post. The online respondents may represent all the people in the southeast Michigan area who are interested in the service, or just a small fraction of the population. Lastly, age was likely confounded by survey type, making it difficult to tell if increasing age relates to decreasing interest level or if instead populations actively in support groups (paper survey group) are less likely to be interested.
Despite these limitations, this study does show that there are a substantial number of people with a high level of interest, although this interest will likely vary based on the group of patients offered the program. Before implementing a pilot program, it may be useful to randomly survey the clinic population to appropriately scale an intervention. Interest, however, will likely be higher than just a few patients in each clinic, based on our findings.
This study provides preliminary information that there is at least a group of patients with strong interest in meeting with their pathologist to see their tissue and discuss their results. A patient-pathologist consultation program may be an effective intervention for improving patient outcomes, especially during the difficult time of initial cancer diagnosis. Additional research and pilot patient-pathologist consultation programs in diverse settings, including outside of the oncologic setting, are necessary to determine the effect of the program on health outcomes and the patient experience. The conceptual model presented, describing potential mechanisms that link patient-pathologist communication to direct and indirect health outcomes, may be a useful framework for future assessments of the value of this program.
Thank you to all of the participants who took the time to complete the survey. Additional thanks to the pathology department's Patient and Family Advisory Council; Rosie Morrison Ingebritson, LMSW, at the Cancer Support Community of Greater Ann Arbor; and the staff at University of Michigan's Rogel Cancer Center who helped facilitate this work.
Support for this publication was provided by the Veterans Affairs Office of Academic Affiliations through the Department of Veterans Affairs and the University of Michigan National Clinician Scholars Program at the Institute for Healthcare Policy and Innovation. The contents do not represent the views of the US Department of Veterans Affairs or the US government.
The authors have no relevant financial interest in the products or companies described in this article.