How gastroenterologists inform patients of results after lower endoscopy

THE AMERICAN JOURNAL OF GASTROENTEROLOGY © 2001 by Am. Coll. of Gastroenterology Published by Elsevier Science Inc.

Vol. 96, No. 7, 2001 ISSN 0002-9270/01/$20.00 PII S0002-9270(01)02530-8

How Gastroenterologists Inform Patients of Results After Lower Endoscopy Javid Fazili, M.D., Marlon Ilagan, M.D., Etienne Phipps, Ph.D., Leonard E. Braitman, Ph.D., and Gary M. Levine, M.D., F.A.C.G. Division of Gastroenterology and Nutrition, Department of Medicine, and the Office for Research and Technology Development, Albert Einstein Medical Center, Philadelphia, Pennsylvania

OBJECTIVE: Little is known about how gastroenterologists communicate endoscopic findings and biopsy results to their patients. We sought to determine the factors that may influence this behavior. METHODS: A survey questionnaire was developed and mailed to the 80 members of the Delaware Valley Society for GI Endoscopy. Information was obtained on the demographic characteristics and responses to six case vignettes prepared to examine communication patterns. We determined possible influences of conscious sedation and the benignity or severity of findings on communication practices. RESULTS: Sixty-one surveys (76%) were completed and analyzed. Endoscopists immediately inform patients of normal results. For abnormal results, 92% would immediately inform nonsedated patients versus 79% that would inform sedated patients (p ⬍ 0.008). Analysis of responses to the case vignettes indicated that 82% of endoscopists would immediately reassure the patient about a benign appearing (⬍1 cm) polyp, but only 70% would do so for a polyp ⬎2 cm (p ⬍ 0.01). In contrast, when presented with a frank malignancy, 94% would inform the patient. Eighty-four percent of endoscopists would telephone results of a benign pathology report, but only 34% would telephone report a dysplastic lesion (p ⬍ 0.001). There was no correlation between the response rate and various demographic parameters such as physician age, type of, or length of time in practice. CONCLUSIONS: Gastroenterologists usually report normal findings immediately, but are less likely to do so after use of sedation or encountering abnormal findings. Most of those surveyed would use the telephone to communicate abnormal findings. (Am J Gastroenterol 2001;96:2086 –2092. © 2001 by Am. Coll. of Gastroenterology)

INTRODUCTION The ability to compassionately communicate test results to patients and their families is crucial from several perspectives. First, it is the physician’s responsibility to share with the patient the implications of expected or unexpected di-

agnoses. This task, which is difficult to do at times, cannot be delegated to a surrogate. When patients and physicians are engaged together in this process, they have an opportunity to carry out a meaningful, realistic exchange. Second, legal precedents mandate that physicians inform their patients about the nature and implications of clinical findings. Third, if this task is done deftly and tactfully, the effectiveness of the patient-physician relationship can be enhanced (1, 2). An additional concern, which is implicit in this process, is the anxiety that patients experience while waiting for the results of a diagnostic test or procedure. Delays in informing patients of test results may be logistical (the test may be sent out to a lab), organizational (no system for efficient reporting of results), or temporal (results not given until a follow-up visit is scheduled). Until the 1970s, most American doctors subscribed to the view that patients should not be informed about the diagnosis of cancer. In 1953, Fitts and Ravdin (3) reported a survey of Philadelphia physicians that revealed 70% usually did not, or never disclosed the diagnosis of cancer. Oken (4), in 1961, surveyed a cross-section of specialists at a Chicago teaching hospital and reported 90% did not tell their patients of the diagnosis of cancer. In 1979, Novack et al. (5) reported a major shift in physician attitude, when Oken’s original survey was reissued to the staff of another teaching hospital. In this latter study, 98% of physicians stated their usual policy was to tell the patient the diagnosis of cancer. More recently, Thomsen et al. (6) surveyed European gastroenterologists determining whether or not they would inform patients about the presence of a sigmoid cancer. Interestingly, Northern European gastroenterologists would be forthcoming whereas Southern European physicians would withhold the diagnosis. In contrast to these studies in cancer patients, there is no information available on how gastroenterologists convey results of the procedures they perform. Most physicians have very little or no training in how to communicate test results appropriately to their patients. Fallowfield and Clark believed that gastroenterologists lacked skills in this aspect of patient care (7). Their erudite review in this

AJG – July, 2001

journal highlighted the scope of the problem and recognized the paucity of research in our field. However, little attention was paid to the most common situation encountered by gastroenterologists—informing patients of endoscopic findings and biopsy results. In an attempt to learn more about this process, we developed a survey instrument to collect and analyze information on how gastroenterologists report results to their patients after lower GI endoscopy.

MATERIALS AND METHODS Before carrying out this survey, we performed an extensive literature review using the National Library of Medicine’s MEDLINE and Bioethicsline. Metathesaurus generated topic lists were also tested to obtain references. The bibliography of all references obtained was also reviewed for pertinent papers. We found a paucity of information on this important aspect of patient care. Physician participants in the study were gastroenterologists with active practices in the tri-state Delaware Valley region. A questionnaire was mailed to the 80 members of the Delaware Valley Society for GI Endoscopy. Sixty-one surveys (76%) were returned and analyzed. Questionnaire A two-part questionnaire was prepared and mailed. The first part of the questionnaire contained questions about physician demographics, including age, board certification, type of training, practice locale and characteristics, number of years in practice, average work hours per week, and processing and review of biopsy specimens. The second part of the questionnaire contained six case vignettes designed to examine patient-physician communication after sigmoidoscopy and colonoscopy. The cases were created to vary the findings and biopsy results from completely benign lesions to carcinoma (see Appendix). Statistical Analysis The Mann-Whitney U test was used to determine if the time that results were communicated and the setting of the response to endoscopy and biopsy findings differed by physician or practice characteristics. Whether or not the severity of the results and the use of sedation was associated with differences in the timing and mode of communication of the test results to patients was analyzed using McNemar’s test for paired responses. CIA (Confidence Interval Analysis, British Medical Journal, London, UK) was used to compute 95% CI of percentages and SPSS version 8.0 (SPSS, Chicago, IL) was used for all other analyses.

RESULTS Demographic Data The mean age of the 61 physicians was 47 yr. Fifty-seven male and four female gastroenterologists returned the sur-

Informing Patients After Lower Endoscopy

2087

Table 1. Demographic Characteristics of Physicians Surveyed Physician Characteristics

Results

Age

Mean ⫽ 47 Range: 31–65

Gender

Male (57) Female (4)

Degree

M.D. (60) D.O. (1)

Board certification

Board certified (55) Board eligible (6)

Type of fellowship training

University hospital (53) Community hospital (6) Other (2)

Locale of practice

Academic center (19) Community hospital (37) Other (5)

Type of practice

Solo (8) GI group (41) Faculty (12)

Years in practice

⬍5 (9) 6–10 (14) 11–15 (10) ⬎15 (28)

Work h/wk

⬍30 (2) 31–40 (1) 41–50 (16) 51–60 (16) ⬎60 (26)

Biopsy results available in

⬍24 h (4) 24–48 h (41) 3–7 days (16)

Personally review biopsy slides

Most of the time (5) Sometimes (39) Rarely (14) Never (3)

vey. Eighty-five percent have been in practice for at least 5 yr and 95% worked over 40 h per wk (Table 1). Sedation and Timing of Reporting Results To investigate whether lower GI endoscopy results were less likely to be reported immediately among sedated than nonsedated patients; we compared such results separately among case vignettes with normal and abnormal results. For nonsedated patients with normal endoscopy results, 100% (95% CI 94 –100) of the physicians reported that they would give results to patients immediately. Fifty-nine of 61 (97%) of physicians also would give normal results to sedated patients (p ⫽ 0.5) (Table 2). Fifty-six of 61 (92%) physicians said they would immediately inform nonsedated patients of abnormal endoscopy results. Eight percent would schedule an office visit to inform the patient of the results. Forty-eight of 61 (79%) of physicians would immediately give abnormal results to sedated patients (p ⫽ 0.008, vs nonsedated patients). If the patient had been sedated, 97% of physicians reported that they still would give normal results to patients immediately

2088

Fazili et al.

AJG – Vol. 96, No. 7, 2001

Table 2. Percentage of Physicians Giving Endoscopy Results Immediately Results Procedure

Normal

Abnormal

Without sedation With sedation

61 (100%) 59 (97%)

56 (92%) 48 (79%)

p ⫽ 0.06 and p ⬍ 0.01 correspond to the paired comparisons of the percentages of normal vs. abnormal endoscopy results in patients without and with sedation, respectively. p ⫽ 0.5 and p ⫽ 0.008 correspond to the paired comparisons of the percentages of patients with and without sedation in patients with normal and abnormal endoscopy resutls, respectively.

compared to only 79% of physicians, if the results were abnormal (p ⬍ 0.01). Twenty-one percent would ask the patient to come in for an office visit to discuss the results. Endoscopic Findings and Timing of Reporting Results When physicians were presented with a case vignette where a benign looking ⬍1 cm polyp was found in the colon, 82% of the physicians would immediately give the results to the patient. However, when a larger, potentially serious lesion (⬎2 cm polyp) was found, only 70% of physicians would immediately give the results to the patient (p ⬍ 0.01). Thirty percent would schedule an office visit to discuss the results after obtaining the pathology report. However, when confronted with a large, sessile, malignant appearing cecal lesion, 94% of physicians would immediately inform the patient and/or their companion of the endoscopic findings. Biopsy Results and Timing of Reporting Results Because reviewing the results of pathological examination of GI lesions is an important part of the information communicated to patients, we asked about the frequency of reviewing biopsies. We found that only 8% of the physicians personally reviewed biopsies most of the time, 64% sometimes, and 28% rarely or never. Biopsy reports were available in ⬍24 h to only 6% of physicians, and to 68% of respondents in 24 – 48 h. When presented with a case vignette where the biopsy results following a procedure were normal, 84% of physicians responded that they would give the biopsy results to the patient on the telephone. However, when those biopsy results came back as suspicious (i.e., adenomatous polyp with dysplasia), only 34% would give the results on the telephone (p ⬍ 0.001 vs a normal result). Sixty-six percent responded that they would schedule a return visit to discuss the results and future management with the patient and/or family. However, when presented with a case where the biopsy results after a procedure came back as definite malignancy, 54 of 57 (95% CI 85–99) of the physicians would immediately call the patient with the results if the patient did not call or missed an appointment (p ⬍ 0.001 vs suspicious result).

DISCUSSION To our knowledge, no data exists describing how gastroenterologists inform their patients of endoscopic findings. We

chose to determine the practice patterns of a convenience sample of physicians, the Delaware Valley Society for GI Endoscopy. Survey respondents practice in urban and suburban settings in the Southeastern Pennsylvania, Delaware and Southern New Jersey region. Members include both academic and private practice physicians. The response rate of 76% was sufficient to ascertain practice patterns of a large number of physicians. As with any survey, there is always a question of whether the responses reflect everyday behavior. The participants were assured anonymity, making it more likely that we obtained valid results. Our study may not reflect the behavior of the gastroenterologists who did not respond or who practice in other areas of the country. Many of our members were trained in the Delaware Valley and their responses may reflect “local” behaviors learned during fellowship. Both the use of sedation and the severity of the endoscopic or biopsy abnormality influence the methods that gastroenterologists use to communicate results to their patients. We did not find any physician demographic characteristic to be associated with physician response in our survey. Physician age, years in practice, work hours/day, and whether the physician practiced in an academic hospital or community setting were not associated with either the timing or mode by which physicians provide patients with test results. Our results revealed that nearly all gastroenterologists immediately report the results of flexible sigmoidoscopy and colonoscopy to their patients and patient’s companions. Even if sedation is used, most physicians still report normal results immediately after recovery of consciousness. If an abnormality is seen, significantly fewer physicians immediately inform patients, but 79% would still immediately inform the patient and their companion. Many patients are first diagnosed with a disorder at endoscopy. In a vignette describing colonoscopic discovery of a cecal carcinoma, 70% of endoscopists would immediately inform the patient of their clinical impression. Because of the amnesic effects of sedation, patients may not remember some or all of the information provided to them after endoscopy, despite an apparently satisfactory physician-patient dialogue. This factor might have influenced the responses of gastroenterologists, when dealing with sedated compared with nonsedated patients. We did not assess whether or not physicians would give written reports to patients, a common practice to improve communication after endoscopy. We also investigated communication of pathology results after obtaining biopsies or polypectomy. When we analyzed the results, most gastroenterologists would call patients to inform them of biopsy results of small benign polyps. Unexpectedly, we found that when confronted with a large dysplastic polyp, two-thirds of gastroenterologists would schedule an office visit to discuss the results. However, if the pathologist reported that a lesion was cancerous, 94% would inform the patient by telephone if necessary, lessening the need to schedule an office visit to discuss the results.

AJG – July, 2001

Physicians may believe the need to give indeterminate results in person to the patient, given the complex nature of different options, future management, and concern about ensuring follow-up. Another possible explanation as to the frequent use of the telephone to communicate results is managed care. Physicians may have found that it is no longer cost-effective to schedule uncompensated return visits to discuss results of procedures. We did not include any questions about physician’s practice payer mix in our survey. In the future, it would be interesting to ascertain whether the patient’s type of insurance coverage influences physician behavior. This behavior by gastroenterologists is at odds with the published recommendations by cancer surgeons and oncologists for giving bad news to patients (8, 9). In some situations physicians might defer giving information to patients until pathological confirmation is obtained. However, this waiting period can increase patient anxiety. It may be avoided by discussing the various possibilities with the patient in advance of obtaining a final diagnosis. We believe this study is the first to report on the communication behaviors of gastroenterolgists following lower endoscopy. In addition, these data may indicate the need for formal training in communication skills during fellowship. We did not ask about how gastroenterologists acquire the necessary skills to effectively communicate with their patients. Although, both the Accreditation Council for Graduate Medical Education (ACGME) and the American Board of Internal Medicine mandate training in “humanistic qualities and interpersonal communication skills,” formal guidelines and a curriculum are lacking. We hope this study will serve as an impetus for further research in this area.

Informing Patients After Lower Endoscopy

2089

ACKNOWLEDGMENTS We thank the members of the Delaware Valley Society for GI Endoscopy for participating in our survey and Ms. Jackie Jones for secretarial support.

Reprint requests and correspondence: Gary M. Levine, M.D., Head, Division of Gastroenterology and Nutrition, Albert Einstein Medical Center, 5501 Old York Road, Klein POB 350, Philadelphia, PA 19141. Received Aug. 9, 2000; accepted Dec. 21, 2000.

REFERENCES 1. Creagan ET. How to break bad news—and not devastate the patient. Mayo Clinic Proc 1994;69:1015–7. 2. Radovsky SS. Bearing the news. N Engl J Med 1985;313: 586 – 8. 3. Fitts WT Jr, Ravdin IS. What Philadelphia physicians tell patients with cancer. JAMA 1953;153:901– 4. 4. Oken D. What to tell cancer patients: A study of medical attitudes. JAMA 1961;175:1120 – 8. 5. Novack DH. Changes in physician’s attitudes toward telling the cancer patient. JAMA 1979;241:897–900. 6. Thomsen OO, Wulff HR, Martin A, Singer PA. What do gastroenterologists in Europe tell cancer patients? Lancet 1993;341:473– 6. 7. Fallowfield LJ, Clark AW. Delivering bad news in gastroenterology. Am J Gastroenterol 1994;89:473–9. 8. Fallowfield L. Giving sad and bad news. Lancet 1993;341: 476 – 8. 9. Ptacek JT, Eberhardt TL. Breaking bad news (a review of literature). JAMA 1996;276:496 –502.

2090

Fazili et al.

AJG – Vol. 96, No. 7, 2001

APPENDIX Thank you for taking the time to complete this survey. It was conceived as a research project to address an important but often overlooked clinical problem: how do we communicate with our patients after endoscopic procedures? I. The following are some general questions regarding you and your practice. Please circle the appropriate response: 1. Name: (optional) 2. Age 3. Gender: M F 4. Degree: a. MD b. DO 5. Are you a BC/BE gastroenterologist? a. BC b. BE c. Neither 6. Type of training: a. university hospital b. community hospital c. other 7. Years in practice: a. ⬍5 yr b. 5–10 yr c. 11–15 yr d. ⬎15 yr 8. Locale of practice: a. community hospital b. academic center c. other 9. Type of practice: a. solo practice b. group GI c. multispecialty group d. full–time faculty e. other 10. Average work week hours: a. ⬍30 b. 30 – 40 c. 41–50 d. 50 – 60 e. ⬎60 11. Average office hours per week: a. ⬍5 b. 5–10 c. 11–15 d. 16 –20 e. ⬎20 12. What % of your endoscopies is done in: % a. a hospital % b. a free standing endoscopy unit % c. your office d. other % 13. Biopsy specimens are processed in: a. your hospital’s Pathology department b. sent out to commercial lab 14. Biopsy results are available in: a. 24 h or less b. 24 – 48 h c. 3–7 days d. ⬎7 days 15. Do you review your own biopsy slides? a. most times b. sometimes c. rarely d. never

AJG – July, 2001

Informing Patients After Lower Endoscopy

II. The following questions are general questions regarding your usual procedure for disclosing test results to patients. Please circle the response that reflects what you are most likely to do: 16. After a procedure not requiring sedation (i.e., flexible sigmoidoscopy), with normal results do you . . . a. Tell the patient the results immediately prior to discharge. b. Schedule a return visit to discuss the results. c. Communicate your results to the referring primary and tell the patient to contact the primary for results. d. Other 17. After a procedure not requiring sedation (i.e., flexible sigmoidoscopy), with an abnormal result do you . . . a. Tell the patient the results immediately prior to discharge. b. Schedule a return visit to discuss the results. c. Communicate your results to the referring primary and tell the patient to contact the primary for results. d. Other 18. After a procedure requiring sedation (i.e., colonoscopy), with normal results do you . . . a. Tell the patient the results immediately prior to discharge. b. Schedule a return visit to discuss the results. c. Communicate your results to the referring primary and tell the patient to contact the primary for results. d. Other 19. After a procedure requiring sedation (colonoscopy), with abnormal results do you . . . a. Tell the patient the results immediately prior to discharge. b. Schedule a return visit to discuss the results. c. Communicate your results to the referring primary and tell the patient to contact the primary for results. d. Other III. The following questions are representative clinical situations. Please circle the response that reflects your usual procedure for disclosing test results to patients. 20. Patient A: a 50-year-old man is referred to you for colon cancer screening. He has symptoms suggestive of internal hemorrhoids, occasionally noticing of blood on the tissue. He is otherwise healthy with no other medical problems. You perform an adequately prepped flexible sigmoidoscopy reaching the splenic flexure without sedation. You find small (⬍4 mm) polyps in the sigmoid area which you biopsy. Everything else is normal. You would then . . . a. Tell the patient that everything looked “okay” and not to worry about the biopsies. b. Tell the patient that everything looked “okay” but that you took biopsies to make sure, and will call him with the results. c. Schedule a return visit once you receive the biopsy report to discuss the results of the flexible sigmoidoscopy and other tests that may be necessary. d. Tell the patient to call the referring physician for the results and your recommendations. 21. Patient A is very anxious and calls you the very next day for the results of the biopsy. You would . . . a. Reassure the patient over the telephone that everything is “normal” and that there is nothing to worry about, and recommend flexible sigmoidoscopy in 3–5 years for routine health maintenance. b. Immediately call the pathology lab for the results and inform the patient by telephone. c. Inform the patient you will call him as soon as the pathology report returns. d. Schedule a return visit to discuss the results of the flexible sigmoidoscopy and other tests that may be necessary. e. Tell the patient to call the referring physician for the results and your recommendations. 22. The pathologist calls to inform you that one of the polyps is adenomatous with a focus of severe dysplasia. Patient A again calls you the very next day. You would . . . a. Tell the patient over the telephone that he needs a colonoscopy and that you will schedule it right away. b. Schedule a return visit to discuss the results of the flexible sigmoidoscopy and other tests that may be necessary. c. Tell the patient that you will send a report to his referring physician with your recommendations. 23. Patient B: an asymptomatic 35-year-old woman is referred to you because she is worried about colon cancer. Her father and older brother both died at age 45 of colon cancer. You perform a colonoscopy with sedation. Her spouse accompanies the patient. Colonoscopy reveals several large (⬎2 cm) pedunculated polyps, which you successfully remove. You would . . . a. Wait until the patient recovers from sedation, then reassure the patient and her spouse that everything is “taken care of” but that she needs close follow-up because she is at high risk. b. Tell the spouse about the results right after the procedure and if the patient has further questions, to call you at her convenience. c. Schedule a return visit to discuss the results of the biopsy and other tests that may be necessary. d. Tell the patient that you will send a report to the referring physician with your recommendations. 24. The pathologist calls to inform you that one of the polyps was adenomatous with a focus of severe dysplasia. Patient B is very anxious and calls you the very next day. You would . . . a. Tell the patient over the telephone that she needs a follow-up colonoscopy soon and that you will schedule it right away. b. Schedule a return visit to discuss the results of the biopsy and the possibility of other tests that may be necessary. c. Tell the patient that you will send a report to her referring physician with your recommendations.

2091

2092

Fazili et al.

AJG – Vol. 96, No. 7, 2001

25. Patient C: a 60-year-old woman is referred to you for “heme positive stool” and iron deficiency anemia. She is otherwise asymptomatic with no other medical problems. The physical exam is unremarkable. You perform a full-colonoscopy and find a 4 cm sessile polyp in the cecum. It is impossible to perform a safe polypectomy. You biopsy the lesion. At the end of the procedure you . . . a. Once fully recovered from sedation you tell the patient and her companion that there is an abnormality, but that you are waiting for the biopsy results to confirm your suspicion. b. Once fully recovered from sedation you tell the patient and her companion that there is an abnormality and she will need surgery. c. Tell only her companion about the results right after the procedure and say that you will discuss the results with the patient “later on.” d. Schedule a return visit to discuss the results of the biopsy and other tests that may be necessary. e. Tell the patient that you will send a report to her referring physician with your recommendations for any future treatment. 26. Patient C’s biopsies reveal a well-differentiated carcinoma. It has been 1 week and the patient either has not called you or missed her office appointment. You will . . . a. Call the patient personally and tell her the results right away over the telephone. b. Have your staff call her to schedule an office visit right away. c. Send the patient a registered letter describing the problem and the need for follow up. d. Send a report to the referring physician and defer to him the task of informing the patient.