BACKGROUND: Soft tissue sarcomas (STS) are a heterogenous group of rare tumors that involve the connective tissue in the body (e.g. muscle, tendons). As with many rare tumors, little is known about the impact of STS on patient well-being. OBJECTIVE: The aim of this review was to better understand current knowledge related to patient experience and quality of life (QOL) following diagnosis of STS. METHODS: A systematic review of English-language articles published from 2005 to 2015 was conducted in the PubMed/MEDLINE, Embase, PsychINFO, and Evidence-Based Medicine databases. The review included recent conference proceedings and advocacy websites. Articles were eligible if they included adult STS patient-reported outcomes (PROs) or details on patient experience. RESULTS: Overall, 3430 articles were identified and 20 were eligible for inclusion. Of these, 14 were clinical studies that included PRO measures, 1 summarized PRO measures used in STS studies, and 5 described the STS patient experience. Patients with STS report a range of impacts on QOL, including emotional well-being, body image, functional deficit following surgery, and practical considerations such as child care and work. CONCLUSIONS: Few studies have published either qualitative or quantitative data on the patient experience with STS. While STS has a measurable impact on QOL, there is a lack of detailed information in the published literature. Although PROs are used in clinical studies of STS, they are not STS-specific and may not capture the unique needs of this population. There is a need for qualitative research to better understand both patient and caregiver experiences in STS.
BACKGROUND: Soft tissue sarcomas (STS) are a heterogenous group of rare tumors that involve the connective tissue in the body (e.g. muscle, tendons). As with many rare tumors, little is known about the impact of STS on patient well-being. OBJECTIVE: The aim of this review was to better understand current knowledge related to patient experience and quality of life (QOL) following diagnosis of STS. METHODS: A systematic review of English-language articles published from 2005 to 2015 was conducted in the PubMed/MEDLINE, Embase, PsychINFO, and Evidence-Based Medicine databases. The review included recent conference proceedings and advocacy websites. Articles were eligible if they included adult STS patient-reported outcomes (PROs) or details on patient experience. RESULTS: Overall, 3430 articles were identified and 20 were eligible for inclusion. Of these, 14 were clinical studies that included PRO measures, 1 summarized PRO measures used in STS studies, and 5 described the STS patient experience. Patients with STS report a range of impacts on QOL, including emotional well-being, body image, functional deficit following surgery, and practical considerations such as child care and work. CONCLUSIONS: Few studies have published either qualitative or quantitative data on the patient experience with STS. While STS has a measurable impact on QOL, there is a lack of detailed information in the published literature. Although PROs are used in clinical studies of STS, they are not STS-specific and may not capture the unique needs of this population. There is a need for qualitative research to better understand both patient and caregiver experiences in STS.
Authors: Daphne Schreiber; Robert S Bell; Jay S Wunder; Brian O'Sullivan; Robert Turcotte; Bassam A Masri; Aileen M Davis Journal: Qual Life Res Date: 2006-05-27 Impact factor: 4.147
Authors: Paul G Kluetz; Ashley Slagle; Elektra J Papadopoulos; Laura Lee Johnson; Martha Donoghue; Virginia E Kwitkowski; Wen-Hung Chen; Rajeshwari Sridhara; Ann T Farrell; Patricia Keegan; Geoffrey Kim; Richard Pazdur Journal: Clin Cancer Res Date: 2016-01-12 Impact factor: 12.531
Authors: Katja M J Thijssens; Josette E H M Hoekstra-Weebers; Robert J van Ginkel; Harald J Hoekstra Journal: Ann Surg Oncol Date: 2006-04-12 Impact factor: 5.344
Authors: Kristen Davidge; Robert Bell; Peter Ferguson; Robert Turcotte; Jay Wunder; Aileen M Davis Journal: J Surg Oncol Date: 2009-10-01 Impact factor: 3.454
Authors: Sarah L Shingler; Paul Swinburn; Andrew Lloyd; Jose Diaz; Robert Isbell; Stephanie Manson; Charlotte Benson Journal: Qual Life Res Date: 2012-10-26 Impact factor: 4.147
Authors: Peter Reichardt; Michael Leahy; Xavier Garcia Del Muro; Stefano Ferrari; Javier Martin; Hans Gelderblom; Jingshu Wang; Arun Krishna; Jennifer Eriksson; Arthur Staddon; Jean-Yves Blay Journal: Sarcoma Date: 2012-03-20
Authors: A Poveda; A López-Pousa; J Martín; J García Del Muro; R Bernabé; A Casado; C Balañá; O Sanmartín; M D Menéndez; P Escudero; J Cruz; Elena Belyakova; D Menéndez; J M Buesa Journal: Sarcoma Date: 2005
Authors: Laurie Eliason; Laura Grant; Anya Francis; Anna Cardellino; Ken Culver; Sant P Chawla; Rob Arbuckle; Shibani Pokras Journal: J Patient Rep Outcomes Date: 2022-05-04
Authors: Lesley Storey; Lorna A Fern; Ana Martins; Mary Wells; Lindsey Bennister; Craig Gerrand; Maria Onasanya; Jeremy S Whelan; Rachael Windsor; Julie Woodford; Rachel M Taylor Journal: Sarcoma Date: 2019-02-17
Authors: Gilber Kask; Ian Barner-Rasmussen; Jussi Petteri Repo; Magnus Kjäldman; Kaarel Kilk; Carl Blomqvist; Erkki Juhani Tukiainen Journal: Ann Surg Oncol Date: 2019-08-12 Impact factor: 5.344
Authors: Dide den Hollander; Winette T A Van der Graaf; Marco Fiore; Bernd Kasper; Susanne Singer; Ingrid M E Desar; Olga Husson Journal: ESMO Open Date: 2020-10
Authors: Leopold Hentschel; Stephan Richter; Hans-Georg Kopp; Bernd Kasper; Annegret Kunitz; Viktor Grünwald; Torsten Kessler; Jens Marcus Chemnitz; Uwe Pelzer; Ulrich Schuler; Janet Freitag; Andrea Schilling; Beate Hornemann; Karin Arndt; Martin Bornhäuser; Markus Kajo Schuler Journal: BMJ Open Date: 2020-08-27 Impact factor: 2.692
Authors: Olga Husson; Winette Ta van der Graaf; Vicky Soomers; Ingrid Me Desar; Lonneke V van de Poll-Franse Journal: BMJ Open Date: 2020-10-26 Impact factor: 2.692