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Article

The Health-Related Quality of Life of Sarcoma Patients and Survivors in Germany—Cross-Sectional Results of a Nationwide Observational Study (PROSa)

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Clinic and Polyclinic for Internal Medicine I, University Hospital Carl Gustav Carus, TU Dresden, 01307 Dresden, Germany
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National Center for Tumor Diseases (NCT/UCC), 01307 Dresden, Germany
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Division of Surgical Oncology & Thoracic Surgery, Mannheim University Medical Center, University of Heidelberg, 68167 Mannheim, Germany
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Interdisciplinary Tumor Center, Sarcoma Unit, University Medical Center Mannheim, 68167 Mannheim, Germany
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Department of General Orthopedics and Tumor Orthopedics, University Hospital Munster, 48149 Munster, Germany
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Sarcoma Center Berlin-Brandenburg, Helios Hospital Bad Saarow, 15526 Bad Saarow, Germany
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Department of Internal Medicine C, University Hospital Greifswald, 17475 Greifswald, Germany
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Clinic for General, Visceral, and Pediatric Surgery, University Hospital Goettingen, 37075 Goettingen, Germany
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Institute for Medical Biostatistics, Epidemiology and Informatic, University Hospital Mainz, 55131 Mainz, Germany
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Clinic for Surgery, University Hospital Erlangen, 91054 Erlangen, Germany
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Clinic for General, Visceral, and Pediatric Surgery, University Hospital Dusseldorf, 40225 Dusseldorf, Germany
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Gerhard-Domagk-Institute for Pathology, University Hospital Munster, 48149 Munster, Germany
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German Sarcoma Foundation, 61200 Woelfersheim, Germany
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The Scientific Institute of Office-based Hematologists and Oncologists, 50676 Cologne, Germany
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University Center for Orthopedics and Trauma Surgery, TU Dresden, 01307 Dresden, Germany
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Clinic and Polyclinic for Internal Medicine III/University-Centre for Tumor Diseases, University Hospital Mainz, 55131 Mainz, Germany
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Clinic for Internal Medicine III, University Hospital Ulm, 89081 Ulm, Germany
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Inter-Local Joint Practice, Dres. Verpoort, Wierecky & Brandl, 20259 Hamburg, Germany
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Medical Clinic II, University Hospital Frankfurt, 60590 Frankfurt am Main, Germany
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Department of Visceral, Thoracic and Vascular Surgery, University Hospital Carl Gustav Carus, TU Dresden, 01307 Dresden, Germany
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Center for Evidence-Based Healthcare, University Hospital Carl Gustav Carus, Technical University Dresden, 01307 Dresden, Germany
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Helios Hospital Emil von Behring, Department of Oncology, 14165 Berlin, Germany
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Author to whom correspondence should be addressed.
The PROSa study group consists of an expert advisory board, which includes representatives from the fields of sarcoma treatment and diagnosis, patient representatives and physicians from the participating office based practices and clinics.
Cancers 2020, 12(12), 3590; https://doi.org/10.3390/cancers12123590
Received: 3 November 2020 / Revised: 24 November 2020 / Accepted: 27 November 2020 / Published: 30 November 2020
(This article belongs to the Special Issue New Directions for Treating Soft Tissue Sarcomas)
Sarcomas are a rare cancer with many different subtypes. They can occur anywhere in the body and are treated in a multi-disciplinary manner. Large studies on the quality of life of sarcoma patients are rare, so little is known about how patients are doing compared to the general population and which groups of sarcoma patients are particularly affected by quality of life limitations. We assessed the quality of life of 1113 sarcoma patients from Germany. The majority were particularly restricted in their emotional functioning, physical functioning, and the exercise of everyday demands (role function). Many of them experienced pain (56%) and fatigue (51%). We found that patients with leg or bone sarcomas were especially affected by quality of life limitations. We also found that patients who received a retirement pension were less affected by quality of life restrictions than patients who had not retired.
Sarcomas are rare cancers with high heterogeneity in terms of type, location, and treatment. The health-related quality of life (HRQoL) of sarcoma patients has rarely been investigated and is the subject of this analysis. Adult sarcoma patients and survivors were assessed between September 2017 and February 2019 in 39 study centers in Germany using standardized, validated questionnaires (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30)). Associated factors were analyzed exploratively using multivariable linear regressions. Among 1113 patients, clinically important limitations and symptoms were most pronounced in emotional (63%, 95% CI 60–66%), physical (60%, 95% CI 57–62%), role functioning (51%, 95% CI 48–54%), and pain (56%, 95% CI 53–59%) and fatigue (51%, 95% CI 48–54%). HRQoL differed between tumor locations with lower extremities performing the worst and sarcoma types with bone sarcoma types being most affected. Additionally, female gender, higher age, lower socioeconomic status, recurrent disease, not being in retirement, comorbidities, and being in treatment were associated with lower HRQoL. Sarcoma patients are severely restricted in their HRQoL, especially in functioning scales. The heterogeneity of sarcomas with regard to type and location is reflected in HRQoL outcomes. During treatment and follow-up, close attention has to be paid to the reintegration of the patients into daily life as well as to their physical abilities and emotional distress. View Full-Text
Keywords: sarcoma; health-related quality of life; rare disease; observational study; clinically important restrictions and symptoms sarcoma; health-related quality of life; rare disease; observational study; clinically important restrictions and symptoms
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Figure 1

MDPI and ACS Style

Eichler, M.; Hentschel, L.; Richter, S.; Hohenberger, P.; Kasper, B.; Andreou, D.; Pink, D.; Jakob, J.; Singer, S.; Grützmann, R.; Fung, S.; Wardelmann, E.; Arndt, K.; Heidt, V.; Hofbauer, C.; Fried, M.; Gaidzik, V.I.; Verpoort, K.; Ahrens, M.; Weitz, J.; Schaser, K.-D.; Bornhäuser, M.; Schmitt, J.; Schuler, M.K.; the PROSa Study Group. The Health-Related Quality of Life of Sarcoma Patients and Survivors in Germany—Cross-Sectional Results of a Nationwide Observational Study (PROSa). Cancers 2020, 12, 3590. https://doi.org/10.3390/cancers12123590

AMA Style

Eichler M, Hentschel L, Richter S, Hohenberger P, Kasper B, Andreou D, Pink D, Jakob J, Singer S, Grützmann R, Fung S, Wardelmann E, Arndt K, Heidt V, Hofbauer C, Fried M, Gaidzik VI, Verpoort K, Ahrens M, Weitz J, Schaser K-D, Bornhäuser M, Schmitt J, Schuler MK, the PROSa Study Group. The Health-Related Quality of Life of Sarcoma Patients and Survivors in Germany—Cross-Sectional Results of a Nationwide Observational Study (PROSa). Cancers. 2020; 12(12):3590. https://doi.org/10.3390/cancers12123590

Chicago/Turabian Style

Eichler, Martin, Leopold Hentschel, Stephan Richter, Peter Hohenberger, Bernd Kasper, Dimosthenis Andreou, Daniel Pink, Jens Jakob, Susanne Singer, Robert Grützmann, Stephen Fung, Eva Wardelmann, Karin Arndt, Vitali Heidt, Christine Hofbauer, Marius Fried, Verena I. Gaidzik, Karl Verpoort, Marit Ahrens, Jürgen Weitz, Klaus-Dieter Schaser, Martin Bornhäuser, Jochen Schmitt, Markus K. Schuler, and the PROSa Study Group. 2020. "The Health-Related Quality of Life of Sarcoma Patients and Survivors in Germany—Cross-Sectional Results of a Nationwide Observational Study (PROSa)" Cancers 12, no. 12: 3590. https://doi.org/10.3390/cancers12123590

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