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.
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.
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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.
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Rumpold, T., Lütgendorf-Caucig, C., Jagsch, R. et al. Information preferences regarding cure rates and prognosis of Austrian patients with advanced lung cancer. Strahlenther Onkol 191, 549–556 (2015). https://doi.org/10.1007/s00066-015-0816-4
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DOI: https://doi.org/10.1007/s00066-015-0816-4