Lessons and Advice From Our Patients: A Focus Group of Sarcoma Survivors

Jill Kain; Amanda Carlson; Justin Kahler; Julianna Bemboom; Katelyn McDonald; Benjamin Miller

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Lessons and Advice From Our Patients: A Focus Group of Sarcoma Survivors

Journal article

Open access

Peer reviewed

Lessons and Advice From Our Patients: A Focus Group of Sarcoma Survivors

Jill Kain, Amanda Carlson, Justin Kahler, Julianna Bemboom, Katelyn McDonald and Benjamin Miller

The Iowa orthopaedic journal, Vol.37, pp.139-146

2017

PMCID: PMC5508276

PMID: 28852348

Appears in Diamond Open Access

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5508276View

Published (Version of record) Open Access

Abstract

Sarcomas are a rare, encompassing a heterogeneous group of malignancies. Success treatment often requires a combination of surgical resection, chemotherapy, and/or radiation. These life-altering interventions can have lasting impact on function and quality-of-life. There is little known about treatment outcomes from the perspective of sarcoma patients. The initial goal of this investigation was to determine the sources and categories of information patients sought at various time points in their care. In addition, we investigated how participants coped with physical and psychological issues that accompany treatment. Finally, we elicited advice on what the care team did well, and could have been done differently, during their diagnosis and recovery. A qualitative, focus group research method was utilized. A purposive sample of participants with a diagnosis of a sarcoma was identified. Three focus groups (20 total participants) were formed and audio/video recorded. The transcripts were analyzed to identify common themes and a scissor-and-sort technique was used to attribute participant comments to the identified themes. Themes were identified and categorized into four major areas: 1) Information at diagnosis, 2) Relationship with care team, 3) Social support, and 4) Restoration to "normal." We identified several areas that can be addressed to enhance patient counseling, emotional understanding, and expectations of treatment. These can serve as a guide for future research endeavors and program development.

Adult

Aged

Bone Neoplasms - psychology

Cancer Survivors - psychology

Female

Focus Groups

Humans

Male

Middle Aged

Qualitative Research

Quality of Life - psychology

Sarcoma - psychology

Social Support

Soft Tissue Neoplasms - psychology

Young Adult

Details

Title: Subtitle: Lessons and Advice From Our Patients: A Focus Group of Sarcoma Survivors
Creators: Jill Kain - University of Iowa Holden Comprehensive Cancer Center
Amanda Carlson - University of Iowa Holden Comprehensive Cancer Center
Justin Kahler - University of Iowa Holden Comprehensive Cancer Center
Julianna Bemboom - University of Iowa Holden Comprehensive Cancer Center
Katelyn McDonald - University of Iowa Department of Orthopaedics and Rehabilitation
Benjamin Miller - University of Iowa
Resource Type: Journal article
Publication Details: The Iowa orthopaedic journal, Vol.37, pp.139-146
Publisher: Dept. of Orthopaedics, The University of Iowa; United States
PMID: 28852348
PMCID: PMC5508276
ISSN: 1541-5457
eISSN: 1555-1377
Grant note: P30 CA086862 / NCI NIH HHS
Language: English
Date published: 2017
Academic Unit: Orthopedics and Rehabilitation
Record Identifier: 9984304701702771

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