Annals of Surgical Oncology

, Volume 15, Issue 11, pp 3289–3298 | Cite as

Patient Preferences for the Disclosure of Prognosis After Esophagectomy for Cancer with Curative Intent

  • Sjoerd M. Lagarde
  • Sanne J. Franssen
  • Jochem R. van Werven
  • Ellen M. A. Smets
  • T. C. Khe Tran
  • Hugo W. Tilanus
  • John Th. M. Plukker
  • Johanna C. J. M. de Haes
  • J. Jan B. van Lanschot
Gastrointestinal Oncology



The aim of this study was to determine the preferences for content, style, and format of prognostic information of patients after potentially curative esophagectomy for cancer and to explore predictors of these preferences.

Patients and Methods

This multicenter study included a consecutive series of patients who underwent surgical resection for cancer in the past 2 years and who did not have evidence of cancer recurrence. A questionnaire was used to elicit patient preferences for the content, style, and format of prognostic information. Sociodemographic characteristics, clinicopathological factors, and quality of life (EORTC QLQ-30 and OES18) were explored as predictors for certain preferences.


Of the 204 eligible patients, 176 patients (86%) returned the questionnaire. The majority of patients desired prognostic information. Information preferences declined when information became more specific and more negative. Married patients and higher-educated patients were more likely to want all prognostic information. The majority of patients wanted their specialist to start the discussion about prognosis. However, a significant proportion of these patients wanted their specialist to first ask if they want to have prognostic information. The percentage of patients wanted a realistic and individualistic approach was 97%. Words and numbers were preferred over visual presentations.


After potentially curative esophagectomy for cancer, the majority of patients want detailed prognostic information and want their specialist to begin the prognostic discussion. Patients prefer their doctor to be realistic; words and numbers are preferred over figures and graphs.


Prognosis Esophageal cancer Communication Esophagectomy Patient preferences 



The authors are grateful to P. N. Butow for kindly allowing us to use their questionnaire and Anne Molenaar and Sue Braithwaite for translation of the questionnaire. Sjoerd M. Lagarde is supported by a grant (04-77) from the Maag Lever Darm Stichting (Dutch Digestive Diseases Foundation). Sanne J. Franssen is supported by a grant from the Dutch Cancer Society.


  1. 1.
    de Manzoni G, Pedrazzani C, Pasini F, et al. Pattern of recurrence after surgery in adenocarcinoma of the gastro-oesophageal junction. Eur J Surg Oncol 2003; 29:506–10.PubMedCrossRefGoogle Scholar
  2. 2.
    Hulscher JB, van Sandick JW, Tijssen JG, et al. The recurrence pattern of esophageal carcinoma after transhiatal resection. J Am Coll Surg 2000; 191:143–8.PubMedCrossRefGoogle Scholar
  3. 3.
    Mariette C, Balon JM, Piessen G, et al. Pattern of recurrence following complete resection of esophageal carcinoma and factors predictive of recurrent disease. Cancer 2003; 97:1616–23.PubMedCrossRefGoogle Scholar
  4. 4.
    Hulscher JB, Tijssen JG, Obertop H, et al. Transthoracic versus transhiatal resection for carcinoma of the esophagus: a meta-analysis. Ann Thorac Surg 2001; 72:306–13.PubMedCrossRefGoogle Scholar
  5. 5.
    Hulscher JB, van Sandick JW, de Boer AG, et al. Extended transthoracic resection compared with limited transhiatal resection for adenocarcinoma of the esophagus. N Engl J Med 2002; 347:1662–9.PubMedCrossRefGoogle Scholar
  6. 6.
    van Sandick JW, van Lanschot JJ, ten Kate FJ, et al. Indicators of prognosis after transhiatal esophageal resection without thoracotomy for cancer. J Am Coll Surg 2002; 194:28–36.PubMedCrossRefGoogle Scholar
  7. 7.
    Orringer MB, Marshall B, Iannettoni MD. Transhiatal esophagectomy: clinical experience and refinements. Ann Surg 1999; 230:392–400.PubMedCrossRefGoogle Scholar
  8. 8.
    Lagarde SM, ten Kate FJ, Reitsma JB, et al. Prognostic factors in adenocarcinoma of the esophagus or gastroesophageal junction. J Clin Oncol 2006; 24:4347–55.PubMedCrossRefGoogle Scholar
  9. 9.
    DiBlasio CJ, Kattan MW. Use of nomograms to predict the risk of disease recurrence after definitive local therapy for prostate cancer. Urology 2003; 62:9–18.PubMedCrossRefGoogle Scholar
  10. 10.
    Anagnostou T, Remzi M, Lykourinas M, et al. Artificial neural networks for decision-making in urologic oncology. Eur Urol 2003; 43:596–603.PubMedGoogle Scholar
  11. 11.
    Bertucci F, Salas S, Eysteries S, et al. Gene expression profiling of colon cancer by DNA microarrays and correlation with histoclinical parameters. Oncogene 2004; 23:1377–91.PubMedCrossRefGoogle Scholar
  12. 12.
    Roepman P, Kemmeren P, Wessels LF, et al. Multiple robust signatures for detecting lymph node metastasis in head and neck cancer. Cancer Res 2006; 66:2361–6.PubMedCrossRefGoogle Scholar
  13. 13.
    van’t Veer, Dai H, Van de Vijver V, et al. Gene expression profiling predicts clinical outcome of breast cancer. Nature 2002; 415:530–6Google Scholar
  14. 14.
    Lagarde SM, ten Kate FJ, Richel DJ, et al. Molecular prognostic factors in adenocarcinoma of the esophagus and gastroesophageal junction. Ann Surg Oncol 2006; 14:977–91.PubMedCrossRefGoogle Scholar
  15. 15.
    Jenkins V, Fallowfield L, Saul J. Information needs of patients with cancer: results from a large study in UK cancer centres. Br J Cancer 2001; 84:48–51.PubMedCrossRefGoogle Scholar
  16. 16.
    Wallberg B, Michelson H, Nystedt M, et al. Information needs and preferences for participation in treatment decisions among Swedish breast cancer patients. Acta Oncol 2000; 39:467–76.PubMedCrossRefGoogle Scholar
  17. 17.
    Hagerty RG, Butow PN, Ellis PM, et al. Communicating prognosis in cancer care: a systematic review of the literature. Ann Oncol 2005; 16:1005–53.PubMedCrossRefGoogle Scholar
  18. 18.
    Butow PN, Dowsett S, Hagerty R, et al. Communicating prognosis to patients with metastatic disease: what do they really want to know? Support Care Cancer 2002; 10:161–8.PubMedCrossRefGoogle Scholar
  19. 19.
    Hagerty RG, Butow PN, Ellis PA, et al. Cancer patient preferences for communication of prognosis in the metastatic setting. J Clin Oncol 2004; 22:1721–30.PubMedCrossRefGoogle Scholar
  20. 20.
    Hagerty RG, Butow PN, Ellis PM, et al. Communicating with realism and hope: incurable cancer patients’ views on the disclosure of prognosis. J Clin Oncol 2005; 23:1278–88.PubMedCrossRefGoogle Scholar
  21. 21.
    de Boer AG, Genovesi PI, Sprangers MA, et al. Quality of life in long-term survivors after curative transhiatal oesophagectomy for oesophageal carcinoma. Br J Surg 2000; 87:1716–21.PubMedCrossRefGoogle Scholar
  22. 22.
    de Boer AG, van Lanschot JJ, van Sandick JW, et al. Quality of life after transhiatal compared with extended transthoracic resection for adenocarcinoma of the esophagus. J Clin Oncol 2004; 22:4202–8.PubMedCrossRefGoogle Scholar
  23. 23.
    Ferri LE, Law S, Wong KH, et al. The influence of technical complications on postoperative outcome and survival after esophagectomy. Ann Surg Oncol 2006; 13:557–64.PubMedCrossRefGoogle Scholar
  24. 24.
    Lerut T, Nafteux P, Moons J, et al. Three-field lymphadenectomy for carcinoma of the esophagus and gastroesophageal junction in 174 R0 resections: impact on staging, disease-free survival, and outcome: a plea for adaptation of TNM classification in upper-half esophageal carcinoma. Ann Surg 2004; 240:962–72.PubMedCrossRefGoogle Scholar
  25. 25.
    Barnett MM. Does it hurt to know the worst?—psychological morbidity, information preferences and understanding of prognosis in patients with advanced cancer. Psychooncology 2006; 15:44–55.PubMedCrossRefGoogle Scholar
  26. 26.
    van Lanschot JJ, Hulscher JB, Buskens CJ, et al. Hospital volume and hospital mortality for esophagectomy. Cancer 2001; 91:1574–8.PubMedCrossRefGoogle Scholar
  27. 27.
    TNM: Classification of Malignant Tumours. New York: Wiley-Liss, 2002Google Scholar
  28. 28.
    Dindo D, Demartines N, Clavien PA. Classification of surgical complications: a new proposal with evaluation in a cohort of 6336 patients and results of a survey. Ann Surg 2004; 240:205–13.PubMedCrossRefGoogle Scholar
  29. 29.
    Aaronson NK, Ahmedzai S, Bergman B, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 1993; 85:365–76.PubMedCrossRefGoogle Scholar
  30. 30.
    Blazeby JM, Conroy T, Hammerlid E, et al. Clinical and psychometric validation of an EORTC questionnaire module, the EORTC QLQ-OES18, to assess quality of life in patients with oesophageal cancer. Eur J Cancer 2003; 39:1384–94.PubMedCrossRefGoogle Scholar
  31. 31.
    Fayers P, Aaronson N, Bjordal K, et al. The EORTC QLQ-C30 Scoring Manual, 1999Google Scholar
  32. 32.
    Ptacek JT, Ptacek JJ. Patients’ perceptions of receiving bad news about cancer. J Clin Oncol 2001; 19:4160–4.PubMedGoogle Scholar
  33. 33.
    Ptacek JT, Eberhardt TL. Breaking bad news. A review of the literature. JAMA 1996; 276:496–502.PubMedCrossRefGoogle Scholar
  34. 34.
    Back AL, Arnold RM. Discussing prognosis: “how much do you want to know?” talking to patients who are prepared for explicit information. J Clin Oncol 2006; 24:4209–13.PubMedCrossRefGoogle Scholar
  35. 35.
    Ong LM, Visser MR, Lammes FB, et al. Effect of providing cancer patients with the audiotaped initial consultation on satisfaction, recall, and quality of life: a randomized, double-blind study. J Clin Oncol 2000; 18:3052–60.PubMedGoogle Scholar
  36. 36.
    Butow PN, Dowsett S, Hagerty R, et al. Communicating prognosis to patients with metastatic disease: what do they really want to know? Support Care Cancer 2002; 10:161–8.PubMedCrossRefGoogle Scholar
  37. 37.
    Back AL, Arnold RM. Discussing prognosis: “how much do you want to know?” talking to patients who do not want information or who are ambivalent. J Clin Oncol 2006; 24:4214–7.PubMedCrossRefGoogle Scholar
  38. 38.
    Wayman J, Bennett MK, Raimes SA, et al. The pattern of recurrence of adenocarcinoma of the oesophago-gastric junction. Br J Cancer 2002; 86:1223–9.PubMedCrossRefGoogle Scholar
  39. 39.
    Ogden J, Fuks K, Gardner M, et al. Doctors expressions of uncertainty and patient confidence. Patient Educ Couns 2002; 48:171–6.PubMedCrossRefGoogle Scholar
  40. 40.
    Gordon GH, Joos SK, Byrne J. Physician expressions of uncertainty during patient encounters. Patient Educ Couns 2000; 40:59–65.PubMedCrossRefGoogle Scholar
  41. 41.
    Ridgeway V, Mathews A. Psychological preparation for surgery: a comparison of methods. Br J Clin Psychol 1982; 21:271–80.PubMedGoogle Scholar
  42. 42.
    Molleman E, Krabbendam PJ, Annyas AA, et al. The significance of the doctor-patient relationship in coping with cancer. Soc Sci Med 1984; 18:475–80.PubMedCrossRefGoogle Scholar

Copyright information

© Society of Surgical Oncology 2008

Authors and Affiliations

  • Sjoerd M. Lagarde
    • 1
  • Sanne J. Franssen
    • 2
  • Jochem R. van Werven
    • 1
  • Ellen M. A. Smets
    • 2
  • T. C. Khe Tran
    • 3
  • Hugo W. Tilanus
    • 3
  • John Th. M. Plukker
    • 4
  • Johanna C. J. M. de Haes
    • 2
  • J. Jan B. van Lanschot
    • 1
  1. 1.Department of SurgeryAcademic Medical Center at the University of AmsterdamAmsterdamThe Netherlands
  2. 2.Department of Medical PsychologyAcademic Medical Center at the University of AmsterdamAmsterdamThe Netherlands
  3. 3.Department of SurgeryErasmus Medical CenterRotterdamThe Netherlands
  4. 4.Department of SurgeryUniversity Medical Center Groningen, University of GroningenGroningenThe Netherlands

Personalised recommendations