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Symptom Burden and Palliative Care Needs of Patients with Incurable Cancer at Diagnosis and During the Disease Course |
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| Authors: | Jeannette Vogt Franziska Beyer Jochen Sistermanns Jonas Kuon Christoph Kahl Bernd Alt-Epping Susanne Stevens Miriam Ahlborn Christian George Andrea Heider Maria Tienken Carmen Loquai Kerstin Stahlhut Anne Ruellan Thomas Kubin Andreas Dietz Karin Oechsle Anja Mehnert-Theuerkauf Birgitt van Oorschot Michael Thomas Olaf Ortmann Christoph Engel Florian Lordick the Arbeitsgemeinschaft Palliativmedizin |
| Institution: | 1. Leipzig University Medical Center, University Cancer Center Leipzig, Leipzig, Germany;2. Leipzig University Medical Center, University Cancer Center Leipzig, Leipzig, Germany
Contributed equally.;3. Department of Radiation Oncology, Kliniken Maria Hilf, Mönchengladbach, Germany;4. Department of Thoracic Oncology, Translational Lung Research Center Heidelberg TLRC-H, Thoraxklinik at Heidelberg University Hospital, Member of the German Center for Lung Research DZL, Heidelberg, Germany;5. Department of Hematology, Oncology and Palliative Care, Klinikum Magdeburg, Magdeburg, Germany;6. Department of Palliative Medicine, University Hospital Heidelberg, Heidelberg, Germany Department of Palliative Medicine, University Medical Center Göttingen, Göttingen, Germany;7. Department of Medical Oncology, Kliniken Essen Mitte, Essen, Germany;8. Department of Oncology and Hematology, Klinikum Braunschweig, Braunschweig, Germany;9. Department of Gynecology, Klinikum Südstadt Rostock, Rostock, Germany;10. 3rd Department of Medicine, Klinikum Leverkusen, Leverkusen, Germany;11. Skin Cancer Center Rhein-Main, University Medical Center Mainz, Mainz, Germany;12. Hematology Oncology and Palliative Care Clinic, Immanuel Klinik und Poliklinik Rüdersdorf, Rüdersdorf, Berlin, Germany;13. Department of Hematology, Oncology and Palliative Care, Städtisches Klinikum Karlsruhe, Karlsruhe, Germany;14. Department of Hematology, Oncology and Palliative Care, Klinikum Traunstein, Traunstein, Germany;15. ENT Department, Leipzig University Medical Center, Leipzig, Germany;16. Department of Oncology and Hematology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany;17. Department of Medical Psychology and Medical Sociology, Leipzig University Medical Center, Leipzig, Germany;18. Interdisciplinary Department of Palliative Medicine, University Hospital Würzburg, Würzburg, Germany;19. Department for Gynecology and Obstetrics, University of Regensburg, Caritas Hospital St. Josef, Regensburg, Germany;20. Institute for Medical Informatics, Statistics and Epidemiology, University of Leipzig, Leipzig, Germany |
| Abstract: | BackgroundAlthough current guidelines advocate early integration of palliative care, symptom burden and palliative care needs of patients at diagnosis of incurable cancer and along the disease trajectory are understudied.Material and MethodsWe assessed distress, symptom burden, quality of life, and supportive care needs in patients with newly diagnosed incurable cancer in a prospective longitudinal observational multicenter study. Patients were evaluated using validated self-report measures (National Comprehensive Cancer Network Distress Thermometer DT], Functional Assessment of Cancer Therapy FACT], Schedule for the Evaluation of Individual Quality of Life SEIQoL-Q], Patients Health Questionnaire-4 PHQ-4], modified Supportive Care Needs Survey SCNS-SF-34]) at baseline (T0) and at 3 (T1), 6 (T2), and 12 months (T3) follow-up.ResultsFrom October 2014 to October 2016, 500 patients (219 women, 281 men; mean age 64.2 years) were recruited at 20 study sites in Germany following diagnosis of incurable metastatic, locally advanced, or recurrent lung (217), gastrointestinal (156), head and neck (55), gynecological (57), and skin (15) cancer. Patients reported significant distress (DT score ≥ 5) after diagnosis, which significantly decreased over time (T0: 67.2%, T1: 51.7%, T2: 47.9%, T3: 48.7%). The spectrum of reported symptoms was broad, with considerable variety between and within the cancer groups. Anxiety and depressiveness were most prevalent early in the disease course (T0: 30.8%, T1: 20.1%, T2: 14.7%, T3: 16.9%). The number of patients reporting unmet supportive care needs decreased over time (T0: 71.8 %, T1: 61.6%, T2: 58.1%, T3: 55.3%).ConclusionOur study confirms a variable and mostly high symptom burden at the time of diagnosis of incurable cancer, suggesting early screening by using standardized tools and underlining the usefulness of early palliative care.Implications for PracticeA better understanding of symptom burden and palliative care needs of patients with newly diagnosed incurable cancer may guide clinical practice and help to improve the quality of palliative care services. The results of this study provide important information for establishing palliative care programs and related guidelines. Distress, symptom burden, and the need for support vary and are often high at the time of diagnosis. These findings underscore the need for implementation of symptom screening as well as early palliative care services, starting at the time of diagnosis of incurable cancer and tailored according to patients’ needs. |
| Keywords: | Palliative care Symptom burden Quality of life Distress Cancer |