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The Patient Experience with Soft Tissue Sarcoma: A Systematic Review of the Literature

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Abstract

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.

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Author contributions

Winnette: led the conception and design of the study, and review and analysis of the data along with drafting of the manuscript. Copley Merriman: contributed to the conception and design of the study, and review and analysis of the data along with drafting of the manuscript. Hess: contributed to the conception and design of the study, and review and analysis of the data along with review and revision of the manuscript. Tai: contributed to the conception and design of the study along with the review and revision of the manuscript. Nicol: contributed to the conception and design of the study, and review and analysis of the data along with review and revision of the manuscript.

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Authors and Affiliations

  1. RTI Health Solutions, Research Triangle Park, NC, 27709, USA

    Randall Winnette & Catherine Copley-Merriman

  2. Eli Lilly and Company, Indianapolis, IN, USA

    Lisa M. Hess, Steven J. Nicol & Datchen Fritz Tai

Authors
  1. Randall Winnette
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  2. Lisa M. Hess
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  3. Steven J. Nicol
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  5. Catherine Copley-Merriman
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Corresponding author

Correspondence to Randall Winnette.

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Conflict of interest

Randall Winnette and Catherine Copley-Merriman are employees of RTI Health Solutions, and Lisa M. Hess, Steven J. Nicol, and Datchen Fritz Tai are employees of Eli Lilly and Company. This research was performed under a contract between RTI Health Solutions and Eli Lilly and Company, and was sponsored by Eli Lilly and Company.

Funding

Eli Lilly and Company provided funding for the preparation of this publication.

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Winnette, R., Hess, L.M., Nicol, S.J. et al. The Patient Experience with Soft Tissue Sarcoma: A Systematic Review of the Literature. Patient 10, 153–162 (2017). https://doi.org/10.1007/s40271-016-0200-1

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