Endosonographers’ approach to delivering a diagnosis of pancreatic cancer: obligated but undertrained^[*]

Introduction

Pancreatic cancer is the fourth most common cause of cancer-related deaths in the United States [1] [2]. The prognosis for patients with pancreatic cancer is extremely poor, with the vast majority of them dying within 1 year after receiving this diagnosis [1] [3] [4]. Patients undergo a number of diagnostic procedures to determine the presence of pancreatic cancer, and typically, the primary care physician or oncologist is tasked to deliver the results. However, endoscopic ultrasound-guided fine-needle aspiration (EUS-FNA) has now become the standard of care for sampling pancreatic mass lesions [5], which has increased the likelihood that endosonographers will be the first to make the diagnosis. In addition, with the greater utilization of on-site cytopathology, preliminary FNA results are usually available at the time of the procedure, when patients and their families are still present. Therefore, endosonographers are now often faced with the decision of whether to be the first health care providers to disclose a pancreatic cancer diagnosis.

This paradigm shift in the diagnosis of pancreatic cancer has highlighted a major training gap among interventional gastroenterologists – effective physician communication about cancer and its prognosis. Strong physician communication skills have been linked to higher levels of patient satisfaction, better outcomes, greater adherence to therapies, reduced patient anxiety [6] [7] [8], and even increased cancer survival rates [9] [10]. Furthermore, studies have shown that significant levels of physician stress and burnout are related, among other factors, to inadequate training and uncertainty regarding how to convey difficult news [11] [12].

Effective communication in the setting of oncology has been stratified into three skills: (i) delivery of the diagnosis and proper medical information, (ii) provision of emotional support, and (iii) discussion and support of palliative care [13]. Although the third component may be less relevant for endosonographers, being prepared to disclose a pancreatic cancer diagnosis and to support the patient emotionally is a realistic expectation. The requirement for such skills poses a difficult clinical challenge for gastroenterologists who have not been adequately trained to address these issues with patients and/or cope with their own emotional reactions in this role.

Oncologists communicate a new cancer diagnosis on average 35 times per month, essentially on a daily basis [14]. Therefore, communication skills training is a formal component of hematology/oncology fellowship training, incorporating cognitive, affective, and behavioral components with the goal of promoting greater self-awareness [15]. Communication skills must be acquired during both clinical experience and formalized training [15]. Formal communication skills training is a part of most medical school curricula through didactics and small-group role playing but is not required during medical residencies or fellowships. The recently updated 2014 Accreditation Council for Graduate Medical Education (ACGME) guidelines (http://www.acgme.org/acgmeweb/Portals/0/PDFs/Milestones/InternalMedicineMilestones.pdf) now emphasize the importance of training internal medicine residents in communication skills, but not specifically in disclosing diagnoses. Furthermore, communication skills training is not currently a requirement for gastroenterology training, despite the increasing need to discuss new cancer diagnoses with our patients. Whether the responsibility to disclose a diagnosis should fall to the endosonographer or the oncologist is unclear. Regardless, it is important that endosonographers who do choose to initiate the cancer discussion exhibit optimal communication skills, both for their patients’ and for their own personal well-being.

Extensive literature is available on the efficacy of EUS for the diagnosis and staging of pancreatic cancer, but no data are available on how best to communicate this information to the patient or family. Furthermore, although coping styles among gastroenterologists have been studied [16], no studies to date have specifically focused on how endosonographers cope with the increasing demand of being the first health care providers to convey the diagnosis of pancreatic cancer to a patient.

The aim of this study was to elucidate the current practice patterns, comfort levels, and coping styles of academic and community endosonographers in the context of disclosing a pancreatic cancer diagnosis. We hypothesized that given the lack of formalized training, most endosonographers would hold reservations about disclosing a pancreatic cancer diagnosis after an EUS examination, and that the highest levels of discomfort around disclosure might be influenced by clinical experience and coping style.

Methods

Survey design

This study used a prospective, cross-sectional survey design. Via e-mail, we solicited 707 American Society of Gastrointestinal Endoscopy (ASGE) members from an existing U.S. database of endosonographers to participate. The study was approved by the institutional review board at Northwestern University. The database represents nearly all academic institutions performing EUS and also a large number of community-based endosonographers. Participants completed an online survey ([Fig. 1]) anonymously that included questions about basic demographics, practice data, and factors that might influence the decision to disclose a diagnosis of pancreatic cancer, including coping style.

Fig. 1 Survey of endosonographers’ practices and coping strategies for disclosing a pancreatic cancer diagnosis.

Demographic and practice data

Participants were asked to provide information regarding their gender, primary practice setting, years out of training, 4th-year advanced endoscopy training, and number of EUS procedures performed annually, and about the availability of an on-site cytopathologist.

Disclosure of diagnosis

The second tier of questions assessed the endosonographers’ approach to and comfort level around delivering a diagnosis of gastrointestinal cancer. Respondents were asked to rate the following on a 5-point Likert scale: (i) comfort level when disclosing a pancreatic cancer diagnosis vs. another gastrointestinal malignancy; (ii) preference regarding having another physician (e. g., oncologist) deliver the diagnosis; and (iii) perception of the adequacy of their training and reasons for lack of comfort in delivering a cancer diagnosis. Participants were then asked to provide information on the manner in which they disclosed a diagnosis of pancreatic cancer and the amount of time they spent discussing prognosis, available support services, and treatment options. Finally, the respondents were asked if the disclosure of a pancreatic cancer diagnosis was an obligation of the endosonographer and whether they would participate in communication skills training if it were offered to them. Although the respondents were queried about the availability of on-site cytopathology and their comfort with discussing a preliminary diagnosis, the current survey was not designed to compare comfort levels at the disclosure of a preliminary diagnosis with those at the delivery of a final diagnosis.

Physician coping styles

We subsequently invited the physicians participating in the study to complete a second series of questions assessing their coping mechanisms while disclosing a pancreatic cancer diagnosis. We administered the Brief COPE [17], a 28-item, validated self-report measure examining the frequency of use of common coping strategies. The instructions were adjusted to inquire about coping in the context of “giving difficult or bad news to patients.” Response options (on a 4-point Likert scale) ranged from “I haven’t been doing this at all” to “I’ve been doing this a lot.” A total of 14 unique coping strategies were identified falling into two subcategories – emotion-focused and problem-focused coping. Coping strategies were considered “regularly used” when a score of 3 or higher was met. Composite scores for emotion-focused coping and problem-focused coping were calculated by summing the scores for the various items that corresponded to the coping style.

Data analysis

Data were collected through Adobe FormsCentral survey software (Adobe Systems, San Jose, California, USA) and transferred to IBM SPSS Statistics20 (IBM, Armonk, New York, USA) for analysis. Descriptive data were reported as means, frequencies, and percentages. Independent sample t tests and chi-squared tests were used for between-group comparisons.

Results

Study sample

For this survey, we contacted 707 ASGE members in an existing national database of endosonographers, 162 of whom participated. The 10 physicians who initiated the survey but did not complete it were excluded from the final analysis, resulting in a total sample size of 152 (22 % response rate).

The physician demographic and practice data are summarized in  [Table 1]. The majority of our respondents were male (86.2 %). Of those surveyed, 62 % had completed advanced fellowship training in EUS, with a mean of 10.6 ± 8.5 years in practice (62 % > 5 years and 38 % < 5 years). The sample was split equally between community (47 %) and academic (53 %) endosonographers. Finally, 69 % of the respondents performed more than 200 EUS procedures annually, and 90 % had on-site cytology available to them.

Table 1 Baseline characteristics of endosonographers participating in a study of their approaches to delivering a diagnosis of pancreatic cancer (N = 152).

Characteristic	Value
Demographics
Male, n (%)	131 (86.2)
4th-year training, n (%)	94 (61.8)
Years since completion of training, mean (SD)	10.6 (8.5)
Practice setting, n (%)
Academic	80 (53)
Private practice	72 (47)
Annual volume of EUS procedures, n (%)
50 – 100	10 (7)
100 – 200	36 (24)
200 – 400	64 (42)
> 400	42 (27)
On-site assessment available, n (%)	137 (90)

SD, standard deviation; EUS, endoscopic ultrasound.

Disclosure of a pancreatic cancer diagnosis

Nearly all (92 %) respondents felt an obligation to share a cancer diagnosis when it was available to them; however, only 55 % felt that an “adequate” on-site assessment was sufficient for them to do so. Nonetheless, only 13 % of those surveyed actually referred the patient to another physician for disclosure of the diagnosis. Comfort levels were significantly higher in those who performed more than 400 EUS procedures annually (P < 0.05); performing 200 EUS procedures annually was sufficient among endosonographers in academic settings (75 % vs. 63 %, P = 0.044; [Table 2]) and among endosonographers who had been in practice for longer than 5 years (P = 0.044). No other factors related to disclosure differed significantly by practice type (academic or community) or by years in practice (< 5 or > 5), including the availability of on-site cytopathology ( [Table 2]).

Table 2 Comparison of endosonographers in academic and private practice with respect to comfort level in disclosing a pancreatic cancer diagnosis.

	Community	Academic	P value
Respondents, %	47	53	0.19
> 200 EUS procedures per year, %	63	75	0.044
4th-year training, %	26	36	0.19
Availability of on-site cytopathology, %	90	90	0.54
Feeling obligated to disclose diagnosis, %	93	92	0.74
Feeling adequately trained to disclose diagnosis, %	35	35	0.11

EUS, endoscopic ultrasound.

While most of the endosonographers felt obliged to provide the diagnosis of pancreatic cancer, the majority (80 %) surveyed did not discuss the prognosis or offer information on patient or family support, citing lack of time as the most common reason. Most respondents (85 %) spent less than 20 minutes disclosing a new pancreatic cancer diagnosis, with 25 % allotting 10 minutes or less. The most common reasons endosonographers felt uncomfortable disclosing a diagnosis were the following: (i) lack of adequate time to discuss (46 %); anticipation of an unpleasant reaction from the patient or family (33 %); the idea that pancreatic cancer is a death sentence (27 %); confusion regarding how much information to disclose (22 %); and lack of adequate training (16 %) ([Table 3]). Although the majority of endosonographers felt obligated to disclose a diagnosis, only 45 % felt they were adequately trained to do so.

Table 3 Reasons offered for discomfort in disclosing a pancreatic cancer diagnosis (N = 98).

Reason[*]	n (%)
Lack of time to deliver or discuss news	45 (46)
Anticipation of unpleasant reaction	32 (33)
Thinking that pancreatic cancer is a death sentence	26 (27)
Confusion about how much information to disclose	22 (22)
Feeling inadequately trained	16 (16)
Worry that family will become too attached	3 (3)
Thinking that I am just a technician	3 (3)
Other	13 (13)

^* Respondents could choose more than one reason.

Communication skills training

None of the endosonographers surveyed had formal communication skills training during their residency or fellowship. When questioned as to the optimal time for this training, 92 (61 %) felt that this should be offered during residency or fellowship training to provide the greatest impact. Despite the lack of comfort with current training, only 15 % of all the endosonographers surveyed were willing to participate in communication skills training if it were offered to them now.

Physician coping

Of the 152 physicians participating in the first survey, 98 (64.5 %) agreed to complete the Brief COPE questionnaire. The sample was split between community (43 %) and academic medical settings (57 %). Of the participants, 86.2 % were male, and among those surveyed, 61.8 % had completed a 4th-year advanced endoscopy fellowship, with a mean of 11.2 ± 8.5 years in practice. Of the sample, 69 % had completed more than 200 EUS procedures annually, and 90 % had on-site cytology assessment available. As in the primary survey, the vast majority of the respondents felt an obligation to share a cancer diagnosis when it was available to them; 90 % reported that they felt comfortable or very comfortable in adopting that role, and 83 % endorsed being the first to deliver such news.

Physicians who reported experiencing significant distress around disclosing a diagnosis of cancer cited their concerns as being driven by the anticipation of an unpleasant reaction from the patient (33 %) and/or their personal perception that pancreatic cancer is “a death sentence” (27 %). In the sample, 46 % indicated that their distress was related to not having enough time to speak with the patient regarding diagnosis or treatment, and 22 % indicated that distress was related to confusion over what kind of information to convey.

The respondents used a mixture of emotion-focused and problem-focused coping strategies. The most commonly used coping strategies were the following: acceptance (68 %); positive reframing, or trying to see things in a positive light (44 %); seeking social support – emotional (32 %); active coping, or taking action to circumvent a stressor (31 %); self-distraction (31 %); and religion (20 %). Endosonographers reported using least frequently the strategies of denial, self-blame, and substance abuse ( [Table 4]).

Table 4 Coping strategies used by endosonographers when disclosing a pancreatic cancer diagnosis (N = 98).

Strategy		Percentage, %
Problem-focused coping
Acceptance		68.4
Positive reframing		43.9
Seeking social support – emotional		31.6
Active coping		30.6
Planning		24.5
Seeking social support – instrumental		14.3
Emotion-focused coping
Self-distraction		30.6
Religion		20.4
Venting		18.4
Humor		14.3
Behavioral disengagement		4.1
Self-blame		4.1
Substance use		2.0
Denial		2.9

When between-group differences were examined, those in community settings were more likely than those in academic settings to engage in venting (P = 0.02). Physicians with fewer than 5 years of experience were more likely to seek instrumental support, such as advice from peers (P = 0.01), or to engage in venting (P = 0.02) than were more experienced physicians. Perhaps most striking, physicians who anticipated an unpleasant reaction when disclosing a diagnosis were also more like to engage in self-blame (P = 0.001). Between-group differences are displayed in [Table 5].

Table 5 Between-group comparisons of coping strategies among endosonographers (N = 98).

	Chi-squared test	P value
Primary practice setting × coping strategy
Venting	χ2(2) = 8.3	0.016
> 400 EUS procedures performed annually × coping strategy
Distraction	χ2(1) = 3.9	0.05
Venting	χ2(2) = 5.9	0.05
Years in practice × coping strategy
Instrumental support	χ2(1) = 6.2	0.01
Venting	χ2(2) = 7.8	0.02

EUS, endoscopic ultrasound.

Discussion

Physician communication is an important and often overlooked component of patient satisfaction and effective clinical care. Communication skills training is even more essential when a cancer diagnosis is being disclosed. To our knowledge, there are no formal requirements for communication skills training for gastroenterologists. The widespread utilization of EUS for the diagnosis and staging of pancreatic cancer has shifted the expectation of patients for disclosure of diagnosis toward gastroenterologists. We report the results of a survey of U.S. endosonographers with respect to their practices and level of comfort in disclosing a pancreatic cancer diagnosis. Although nearly all endosonographers felt obligated to disclose a new diagnosis of pancreatic cancer after EUS-FNA, very few felt adequately trained to perform this task effectively. This lack of experience also influenced the respondents’ personal coping.

Communication skills training is an effective component of the oncology fellowship. Multiple studies have validated the impact of communication skills training on patient satisfaction [13] [14] [18] [19] [20] [21] [22] [23] [24] [25] [26]. The majority of structured communication skills training occurs in medical school, where application to patients is generally conducted as simulation or role playing. Although the ACGME has started to recognize the importance of communication skills for resident physicians, formal requirements are still not in place. The focus of training in gastroenterology has been on mastering medical knowledge and procedural skill sets so that physicians will function successfully in practice (e. g., endoscopy), and very little emphasis is placed on the comprehensive biopsychosocial model, which can significantly reduce patient anxiety, improve clinical outcomes, and empower the provider [9] [26].

To date, no studies have assessed communication skills or communication skills training in gastroenterology. This has become even more apparent with the emergence of EUS as a final diagnostic modality for patients suspected to have pancreatic malignancy. Our study highlights the importance and expectations of endosonographers in the disclosure of a pancreatic cancer diagnosis. However, the importance of communication skills training can be extrapolated to all gastroenterologists who face difficult discussions with patients who have colon cancer, irritable bowel syndrome, or inflammatory bowel disease.

One of the challenges of disclosing a diagnosis when EUS-FNA is performed is the availability of a final diagnosis. The role of the on-site cytopathologist is to assess specimen adequacy, not to provide an on-site diagnosis per se. However, in practice, we know from experience that an “adequate” on-site assessment is generally always predictive of a diagnosis of malignancy. In theory, if the endosonographer is to disclose the diagnosis, he or she should wait until a final diagnosis is issued. This situation remains unclear as only 53 % of the endosonographers surveyed felt comfortable in disclosing a diagnosis based solely on on-site assessment, which may be indicative of avoidance and discomfort in breaking the news.

In addition, understanding how physicians cope with conveying difficult news, particularly a diagnosis with such high mortality rates, is important and often neglected. The current study also highlights that those surveyed were likely to use a variety of problem-focused and emotion-focused coping strategies when detecting and delivering the diagnosis of pancreatic cancer. Previous studies have shown that problem-focused strategies, such as active coping, planning, seeking out emotional and instrumental support, acceptance, and positive reframing, are associated with a decrease in psychological distress. In our study, the physicians with more experience and those with a high volume of patients appeared to use these adaptive strategies more frequently, indicating they were less likely than less experienced physicians to suffer psychological distress as a result of their work. Less experienced physicians, and those with a lower volume of cases, were less likely to use problem-focused strategies and more likely to engage in less productive strategies, such as distraction and venting. It is possible that as physicians become more experienced, they become better able to cope with the complexity of the situation. Furthermore, more recently trained physicians who have focused primarily on procedural training may be more prone to the negative impacts of stress. Those who anticipated a bad reaction from a patient or felt that they did not have enough time to speak with a patient engaged in the least helpful coping strategies, and these concerns may be alleviated with training or simulation experiences. Indeed, the majority of respondents indicated that training would be most impactful during residency and fellowship.

The current survey study highlights the lack of communication skills training in physicians currently providing a new pancreatic cancer diagnosis after EUS-FNA. There appears to be some increase in comfort with a high volume of cases and longer years of experience. Although there may be technical differences between academic and community endosonographers, it appears that both groups are equally uncomfortable with their ability to disclose a new diagnosis of pancreatic cancer.

This study has some limitations. There are inherent biases introduced with surveys and from the utilization of a set database of endosonographers. The 22 % response rate is good for a survey study but may still not be truly representative of all physicians performing EUS, particularly those who are most uncomfortable about the topic. Secondly, analysis of disclosure based on preliminary specimen adequacy vs. final diagnosis was not assessed and could be affected by the rigidity of cytopathology disclosure of the diagnosis on site. In addition, it is possible that endosonographers would not disclose a diagnosis until completion of the staging work-up so as to better assess disease prognosis. Finally, the current study was limited to U.S. endosonographers and does not represent the global endosonography community. The strength of this study includes the overall response rate and a balanced participation from academic, community, experienced, and novice endosonographers.

In summary, comfort levels in disclosing a pancreatic cancer diagnosis after performing EUS appear to be higher for endosonographers with a greater volume of cases and more experience but are not influenced by practice setting. Furthermore, experienced endosonographers used more effective coping strategies; however, with practice patterns rapidly shifting toward endosonographers being the first to disclose a diagnosis, experience may not be enough to reduce provider distress. While the majority of endosonographers feel obligated to disclose a pancreatic cancer diagnosis after EUS, the lack of time and proper training, particularly among more junior providers, limits their comfort with disclosure and results in negative coping styles. Formal communication skills training within gastroenterology fellowships should be considered.

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