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Strahlentherapie und Onkologie

, Volume 191, Issue 7, pp 549–556 | Cite as

Information preferences regarding cure rates and prognosis of Austrian patients with advanced lung cancer

  • Tamara Rumpold
  • Carola Lütgendorf-Caucig
  • Reinhold Jagsch
  • Karin Dieckmann
  • Herbert Watzke
  • Richard Pötter
  • Kathrin KirchheinerEmail author
Original Article

Abstract

Introduction

Due to concerns about patients’ wellbeing, open end-of-life communication is associated with reservation. Furthermore, sociocultural differences must be considered. The objective of this pilot study was therefore to investigate the information preferences of Austrian patients regarding cure rates and prognosis.

Patients and methods

The information preferences of 50 advanced lung cancer patients were assessed at their first visit to the Department of Radiation Oncology, Medical University of Vienna. Preferences in terms of content (cure rates and/or prognosis) and depth of the information (additional quantitative estimates) were addressed. After the individually adapted medical consultation, patients’ satisfaction with the consultation and the emotional responses to the information were evaluated.

Results

The majority of patients (76 %) requested information about cure rates and/or prognosis; nearly half of these (47 %) wanted additional quantitative estimates. Neither sociodemographic variables, disease characteristics, nor time since diagnosis had an impact on the information preferences. The individually adapted medical information showed no overall negative influence on the emotional responses; only patients receiving prognostic information had significantly higher distress scores after the consultation. High satisfaction with the individually adapted medical consultation was reported by 92 % of patients.

Conclusion

Austrian physicians may offer end-of-life communication and directly ask patients about their information preferences, since patients seem able to decide whether or not prognostic information would overwhelm their emotional capacity and therefore to accept or reject the invitation. The disclosure of cure rates and/or prognosis with or without quantitative estimates—according to the patients’ preferences—shows overall no negative impact on emotional reactions. The individually adapted consultation results in high patient satisfaction. Nevertheless, prognostic information may lead to higher distress.

Keywords

Consultation Decision making Prognosis Quality of life Palliative care 

Informationspräferenzenbezüglich Heilungschancen und Prognose von österreichischen Patienten mit fortgeschrittenem Bronchialkarzinom

Zusammenfassung

Hintergrund

Gespräche über das Lebensende sind aus Sorge um das emotionale Wohlergehen des Patienten häufig mit Vorbehalten verbunden. Darüber hinaus sind soziokulturelle Besonderheiten zu beachten. Die Ziele dieser Pilotstudie waren demnach, die Informationspräferenz bezüglich Heilungschancen und Prognose von österreichischen Patienen zu erfassen.

Patienten und Methoden

Fünfzig Patienten mit fortgeschrittenem Bronchialkarzinom wurden bei ihrer Erstvorstellung an der Universitätsklinik für Strahlentherapie der Medizinischen Universität Wien, zu ihrer Informationspräferenz bezüglich Inhalt (Heilungschancen und/oder Prognose) und Umfang der Information (zusätzliche statistische Kennzahlen) befragt. Nach dem individuell adaptierten medizinischen Aufklärungsgespräch wurden die Zufriedenheit mit dem Gespräch und die emotionalen Reaktionen auf die Informationen erfasst.

Ergebnisse

Die Mehrheit der Patienten (76 %) wollte Information zu Heilungschancen und/oder Prognose, etwa die Hälfte davon (47 %) mit zusätzlichen statistischen Kennzahlen. Weder soziodemographische und krankheitsspezifische Variablen, noch die Zeit seit der Diagnosestellung hatten einen Einfluss auf die Informationspräferenz. Das individuell adaptierte medizinische Aufklärungsgespräch hatte keinen negativen Einfluss auf die emotionalen Reaktionen im Gesamtscore. Einzig der Aspekt Belastung zeigte sich signifikant erhöht bei Patienten, die über die Prognose aufgeklärt wurden. Insgesamt wurde eine hohe Zufriedenheit mit dem Aufklärungsgespräch (92 %) berichtet.

Schlussfolgerung

Österreichische Ärzte können Gespräche über das Lebensende anbieten und Patienten direkt auf ihre Informationspräferenz ansprechen, da Patienten selbst entscheiden können, ob prognostische Information ihre emotionale Kapazität zum Zeitpunkt übersteigen würde oder nicht. Patienten, die ihrem Wunsch entsprechend über Heilungschancen und/oder Prognose mit oder ohne statistischen Kennzahlen aufgeklärt wurden, zeigten insgesamt keine erhöhte emotionale Reaktion. Die individuell adaptierten Aufklärungsgespräche resultierten jedoch in hoher Zufriedenheit. Dennoch kann die prognostische Information zu einer erhöhten Belastung bei den Patienten führen.

Schlüsselwörter

Ärztliche Beratung Entscheidungsfindung Prognose Lebensqualität Palliativpflege 

Notes

Compliance with ethical guidelines

Conflicts of interest

T. Rumpold, C. Lütgendorf-Caucig, R. Jagsch, K. Dieckmann, H. Watzke, R. Pötter, and K. Kirchheiner state that there are no conflicts of interest.

All studies on humans described in the present manuscript were carried out with the approval of the responsible ethics committee and in accordance with national law and the Helsinki Declaration of 1975 (in its current, revised form). Informed consent was obtained from all patients included in studies.

References

  1. 1.
    Aaronson NK, Ahmedzai S, Bergman B et al (1993) The European Organisation 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 85:365–376PubMedCrossRefGoogle Scholar
  2. 2.
    Baile WF, Lenzi R, Parker P et al (2002) Oncologists’ attitudes toward and practices in giving bad news: an exploratory study. J Clin Oncol 20:2189–2196PubMedCrossRefGoogle Scholar
  3. 3.
    Barnett MM (2002) Effect of breaking bad news on patients’ perceptions of doctors. J R Soc Med 95:343–347PubMedCentralPubMedCrossRefGoogle Scholar
  4. 4.
    Butow PN, Maclean M (1997) The dynamics of change: cancer patients’ preferences for information, involvement and support. Ann Oncol 8:857–863PubMedCrossRefGoogle Scholar
  5. 5.
    Charles C, Gafni A, Whelan T (1997) Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med 44:681–692PubMedCrossRefGoogle Scholar
  6. 6.
    Chochinov HM, Tataryn DJ, Wilson KG et al (2000) Prognostic awareness and the terminally ill. Psychosomatics. 41:500–504PubMedCrossRefGoogle Scholar
  7. 7.
    Christakis N, Iwashyna TJ (1998) Attitude and self-reported practice regarding prognostication in a national sample of internists. Arch Intern Med 158:2389–2395PubMedCrossRefGoogle Scholar
  8. 8.
    Clayton JM, Hancock KM, Butow PN et al (2007) Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. Med J Aust 186:77–108Google Scholar
  9. 9.
    Elwyn G, Frosch D, Thomson R et al (2012) Shared decision making: a model for clinical practice. J Gen Intern Med 27:1361–1367PubMedCentralPubMedCrossRefGoogle Scholar
  10. 10.
    Fallowfield LJ, Jenkins VA, Beveridge HA (2002) Truth may hurt but deceit hurts more: communication in palliative care. Palliat Med 16:297–303PubMedCrossRefGoogle Scholar
  11. 11.
    Fayers PM, Aaronson NK, Bjordal K et al (2001) The EORTC QLQ-C30 scoring manual European Organization for Research and treatment of cancer. BrusselsGoogle Scholar
  12. 12.
    Field A (2009) Discovering statistics using SPSS. Sage Publications, LondonGoogle Scholar
  13. 13.
    Gaissmaier W, Gigerenzer G (2011) When misinformed patients try to make informed health decisions. In: Gigerenzer G, Muir Gray JA (eds). Better doctors, better patients, better decisions: envisioning health care 2020. MIT Press, Cambridge, p. 29–44Google Scholar
  14. 14.
    Gattellari M, Butow PN, Tattersall MHN et al (1999) Misunderstanding in cancer patients: why shoot the messenger? Ann Oncol 10:39–46PubMedCrossRefGoogle Scholar
  15. 15.
    Georgaki S, Kalaidopoulou O, Liarmakopoulos I et al (2002) Nurses’ attitudes toward truthful communication with patients with cancer. A Greek study. Cancer Nurs 25:436–441PubMedCrossRefGoogle Scholar
  16. 16.
    Hagerty RG, Butow PN, Ellis PA et al (2004) Cancer patient preferences for communication of prognosis in the metastatic setting. J Clin Oncol 22:1721–1730PubMedCrossRefGoogle Scholar
  17. 17.
    Helft PR (2005) Necessary collusion: Prognostic communication with advanced cancer patients. J Clin Oncol 23:3146–3150PubMedCrossRefGoogle Scholar
  18. 18.
    Huang X, Butow PN, Meiser B et al (1999) Attitudes and information needs of Chinese migrant cancer patients and their relatives. Aust N Z J Med 29:207–213PubMedCrossRefGoogle Scholar
  19. 19.
    Iconomou G, Viha A, Koutra A et al (2002) Information needs and awareness of diagnosis in patients with cancer receiving chemotherapy: a report from Greece. Palliat Med 16:315–321PubMedCrossRefGoogle Scholar
  20. 20.
    Kaplowitz SA, Campo S, Chiu WT (2002) Cancer patients’ desires for communication of prognosis information. Health Commun 14:221–241PubMedCrossRefGoogle Scholar
  21. 21.
    Krasner MS, Epstein RM, Beckman H et al (2009) Association of an educational program in mindful communication with burnout, empathy, and attitudes among primary care physicians. J Am Med Assoc 302:1284–1293CrossRefGoogle Scholar
  22. 22.
    Laine C, Davidoff F (1996) Patient-centered medicine: a professional evolution. J Am Med Assoc 275:152–156CrossRefGoogle Scholar
  23. 23.
    Mack JW, Smith TJ (2012) Reasons why physicians do not have discussions about poor prognosis, why it matters, and what can be improved. J Clin Oncol 30:2715–2717PubMedCrossRefGoogle Scholar
  24. 24.
    Mystakidou K, Parpa E, Tsilila E et al (2004) Cancer information disclosure in different cultural contexts. Support Care Cancer 12:147–154PubMedCrossRefGoogle Scholar
  25. 25.
    Ngo-Metzger Q, August KJ, Srinivasan M et al (2008) End-of-life care: guidelines for patient-centered communication. Am Fam Physician 77:167–74PubMedGoogle Scholar
  26. 26.
    Pieterse AH, Jager N, Smets EM et al (2013) Lay understanding of common medical terminology in oncology. Psychooncology 22:1186–1191PubMedCrossRefGoogle Scholar
  27. 27.
    Republik Österreich (2006) BGBl I 2006/42Google Scholar
  28. 28.
    Schofield PE, Butow PN, Thompson JF et al (2003) Psychological responses of patients receiving a diagnosis of cancer. Ann Oncol 14:48–56PubMedCrossRefGoogle Scholar
  29. 29.
    Surbone A (2008) Cultural aspects of communication in cancer care. Support Care Cancer 16:235–240PubMedCrossRefGoogle Scholar
  30. 30.
    Temel JS, Greer JA, Muzikansky A et al (2010) Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 363:733–742PubMedCrossRefGoogle Scholar
  31. 31.
    The AM, Hak T, Koëter G et al (2001) Collusion in doctor-patient communication about imminent death: an ethnographic study. West J Med 174:247–53PubMedCentralPubMedCrossRefGoogle Scholar
  32. 32.
    Uchitomi Y, Yamawaki S (1997) Truth-telling practice in cancer care in Japan. Ann N Y Acad Sci 809:290–299PubMedCrossRefGoogle Scholar
  33. 33.
    Vandekieft GK (2001) Breaking bad news. Am Fam Physician 64:1975–1978PubMedGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2015

Authors and Affiliations

  • Tamara Rumpold
    • 1
    • 2
  • Carola Lütgendorf-Caucig
    • 1
  • Reinhold Jagsch
    • 2
  • Karin Dieckmann
    • 1
  • Herbert Watzke
    • 3
  • Richard Pötter
    • 1
  • Kathrin Kirchheiner
    • 1
    Email author
  1. 1.Department of Radiation Oncology, Comprehensive Cancer CenterMedical University of ViennaViennaAustria
  2. 2.Department of Applied Psychology: Health, Development, Enhancement and Intervention, Faculty of PsychologyUniversity of ViennaViennaAustria
  3. 3.Division of Palliative Care, Department of Internal Medicine IMedical University of ViennaViennaAustria

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