Theresia Pichler1,2, Amy Rohrmoser3, Anne Letsch3,4, C Benedikt Westphalen5,6, Ulrich Keilholz3, Volker Heinemann5,6, Mario Lamping3,4, Philipp J Jost7,8, Kristina Riedmann7,8, Peter Herschbach9, Ute Goerling3. 1. Comprehensive Cancer Center Munich, partner site TUM, Klinikum rechts der Isar, Munich, Germany. theresia.pichler@mri.tum.de. 2. Comprehensive Cancer Center Munich, partner site LMU, University hospital, LMU Munich, Munich, Germany. theresia.pichler@mri.tum.de. 3. Charité - Universitätsmedizin Berlin, Charité Comprehensive Cancer Center, Berlin, Germany. 4. Department of Hematology and Oncology, Charité - Universitätsmedizin Berlin, Campus Benjamin Franklin, Berlin, Germany. 5. Comprehensive Cancer Center Munich, partner site LMU, University hospital, LMU Munich, Munich, Germany. 6. Department of Medicine III, University Hospital, LMU Munich, Munich, Germany. 7. Center for Personalized Oncology (ZPO), Comprehensive Cancer Center Munich, partner site TUM, Munich, Germany. 8. Medical Department III for Hematology and Oncology, Klinikum rechts der Isar, TUM, Munich, Germany. 9. , Munich, Germany.
Abstract
PURPOSE: Despite promising achievements in precision cancer medicine (PCM), participating patients are still faced with manifold uncertainties, especially regarding a potential treatment benefit of molecular diagnostics (MD). Hence, MD poses considerable challenges for patient information and communication. To meet these challenges, healthcare professionals need to gain deeper insight into patients' subjective experiences. Therefore, this qualitative study examined information aspects of MD programs in cancer patients. METHODS: In two German Comprehensive Cancer Centers, 30 cancer patients undergoing MD participated in semi-structured interviews on information transfer and information needs regarding MD. Additionally, patients provided sociodemographic and medical data and indicated their subjective level of information (visual analogue scale, VAS, 0-10). RESULTS: On average patients had high levels of information (mean = 7, median = 8); nevertheless 20% (n = 6) showed an information level below 5 points. Qualitative analysis revealed that patients show limited understanding of the complex background of MD and have uncertainties regarding their personal benefit. Further, patients described unmet information needs. Existential threat in awaiting the results was experienced as burdensome. To withstand the strains of their situation, patients emphasized the importance of trusting their physician. CONCLUSION: The challenges in PCM consist in providing unambiguous information, especially concerning treatment benefit, and providing guidance and support. Therefore, psycho-oncology needs to develop guidelines for adequate patient communication in order to help healthcare providers and cancer patients to handle these challenges in the developing field of PCM.
PURPOSE: Despite promising achievements in precision cancer medicine (PCM), participating patients are still faced with manifold uncertainties, especially regarding a potential treatment benefit of molecular diagnostics (MD). Hence, MD poses considerable challenges for patient information and communication. To meet these challenges, healthcare professionals need to gain deeper insight into patients' subjective experiences. Therefore, this qualitative study examined information aspects of MD programs in cancerpatients. METHODS: In two German Comprehensive Cancer Centers, 30 cancerpatients undergoing MD participated in semi-structured interviews on information transfer and information needs regarding MD. Additionally, patients provided sociodemographic and medical data and indicated their subjective level of information (visual analogue scale, VAS, 0-10). RESULTS: On average patients had high levels of information (mean = 7, median = 8); nevertheless 20% (n = 6) showed an information level below 5 points. Qualitative analysis revealed that patients show limited understanding of the complex background of MD and have uncertainties regarding their personal benefit. Further, patients described unmet information needs. Existential threat in awaiting the results was experienced as burdensome. To withstand the strains of their situation, patients emphasized the importance of trusting their physician. CONCLUSION: The challenges in PCM consist in providing unambiguous information, especially concerning treatment benefit, and providing guidance and support. Therefore, psycho-oncology needs to develop guidelines for adequate patient communication in order to help healthcare providers and cancerpatients to handle these challenges in the developing field of PCM.
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