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‘I thought I had fibroids, and now I don’t’: a mixed method study on health-related quality of life in uterine sarcoma patients

‘I thought I had fibroids, and now I don’t’: a mixed method study on health-related quality of life in uterine sarcoma patients
‘I thought I had fibroids, and now I don’t’: a mixed method study on health-related quality of life in uterine sarcoma patients
Background: Uterine sarcomas are rare subtypes of primary urogenital tumours and need tailored treatment. This study aimed to examine the impact of diagnosis and treatment on health-related quality of life (HRQoL) in patients with uterine sarcoma and measures available to assess HRQoL in this group. Methods: Thirteen patients with uterine sarcoma and 23 health care professionals were purposively sampled from sarcoma reference centers and participated in a semi-structured interview exploring HRQoL. Patients were also asked to review the EORTC QLQ-C30 and EORTC QLQ-EN24 for relevance. Data were analysed using thematic analysis and descriptive statistics. Results: The most commonly reported physical health issues were related to sexual dysfunction and urological symptoms. Hormone-related issues and gastrointestinal symptoms were also identified. Cancer-generic issues such as functional problems, fatigue, pain, and treatment-related adverse effects were also reported. Regarding mental health, fears (about having sex, of recurrence, or of death), altered body-image, and dealing with lacking knowledge regarding sarcoma had an impact on HRQoL. Social health issues were related to the impact on relationships with others, limitations in undertaking activities, loss of independence, changes in work or study capacity, and financial difficulties. Most of the items of the EORTC QLQ-C30 and EORTC QLQ-EN24 questionnaires were rated as relevant. Questions about lack of knowledge about sarcoma, shock of diagnosis, and menopausal symptoms were lacking from existing measures. Conclusions: Uterine sarcoma patients experience a variety of concerns covering the physical, mental, and social domains of HRQoL that are in the main EORTC instruments, but not all of them. Combining cancer-generic, location- and sarcoma-specific items is recommended to assess HRQoL in this patient group. Trial registration NCT04071704.
Gynaecological sarcoma, Health-related quality of life, Patient-reported outcomes, Soft tissue sarcoma, Uterine sarcoma
1477-7525
Den Hollander, Dide
d79eb12b-241a-4466-a9ac-631a12c66c6c
Lidington, Emma
df6cf457-cdde-4439-90c8-a7122e5615e5
Singer, Susanne
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Sodergren, Samantha C.
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Salah, Samer
9ba17eda-a25a-4821-9a7b-a7007208f382
Fiore, Marco
bc2be577-8e85-477e-ac0c-6bb6aa1bdc60
Benson, Charlotte
edf1f36e-ebfa-40f5-a968-371ed01a7745
Desar, Ingrid M. E.
3c97dab7-b89e-43a1-9a03-30ec12888eec
Burgers, Vivian W. G.
6c1b3e70-ca91-492e-8c07-7763f022e01d
Husson, Olga
37964f59-bb82-46c7-8f67-88c45ba50463
Van Der Graaf, Winette T. A.
b8cb948f-78af-4f2e-bc7e-aa268509dcde
Den Hollander, Dide
d79eb12b-241a-4466-a9ac-631a12c66c6c
Lidington, Emma
df6cf457-cdde-4439-90c8-a7122e5615e5
Singer, Susanne
7fa65198-a58a-476f-acd6-1bf67d3e9f76
Sodergren, Samantha C.
d66fc3fa-2c98-403d-8ae5-410ef95de46e
Salah, Samer
9ba17eda-a25a-4821-9a7b-a7007208f382
Fiore, Marco
bc2be577-8e85-477e-ac0c-6bb6aa1bdc60
Benson, Charlotte
edf1f36e-ebfa-40f5-a968-371ed01a7745
Desar, Ingrid M. E.
3c97dab7-b89e-43a1-9a03-30ec12888eec
Burgers, Vivian W. G.
6c1b3e70-ca91-492e-8c07-7763f022e01d
Husson, Olga
37964f59-bb82-46c7-8f67-88c45ba50463
Van Der Graaf, Winette T. A.
b8cb948f-78af-4f2e-bc7e-aa268509dcde

Den Hollander, Dide, Lidington, Emma, Singer, Susanne, Sodergren, Samantha C., Salah, Samer, Fiore, Marco, Benson, Charlotte, Desar, Ingrid M. E., Burgers, Vivian W. G., Husson, Olga and Van Der Graaf, Winette T. A. (2022) ‘I thought I had fibroids, and now I don’t’: a mixed method study on health-related quality of life in uterine sarcoma patients. Health and Quality of Life Outcomes, 20 (1), [65]. (doi:10.1186/s12955-022-01971-5).

Record type: Article

Abstract

Background: Uterine sarcomas are rare subtypes of primary urogenital tumours and need tailored treatment. This study aimed to examine the impact of diagnosis and treatment on health-related quality of life (HRQoL) in patients with uterine sarcoma and measures available to assess HRQoL in this group. Methods: Thirteen patients with uterine sarcoma and 23 health care professionals were purposively sampled from sarcoma reference centers and participated in a semi-structured interview exploring HRQoL. Patients were also asked to review the EORTC QLQ-C30 and EORTC QLQ-EN24 for relevance. Data were analysed using thematic analysis and descriptive statistics. Results: The most commonly reported physical health issues were related to sexual dysfunction and urological symptoms. Hormone-related issues and gastrointestinal symptoms were also identified. Cancer-generic issues such as functional problems, fatigue, pain, and treatment-related adverse effects were also reported. Regarding mental health, fears (about having sex, of recurrence, or of death), altered body-image, and dealing with lacking knowledge regarding sarcoma had an impact on HRQoL. Social health issues were related to the impact on relationships with others, limitations in undertaking activities, loss of independence, changes in work or study capacity, and financial difficulties. Most of the items of the EORTC QLQ-C30 and EORTC QLQ-EN24 questionnaires were rated as relevant. Questions about lack of knowledge about sarcoma, shock of diagnosis, and menopausal symptoms were lacking from existing measures. Conclusions: Uterine sarcoma patients experience a variety of concerns covering the physical, mental, and social domains of HRQoL that are in the main EORTC instruments, but not all of them. Combining cancer-generic, location- and sarcoma-specific items is recommended to assess HRQoL in this patient group. Trial registration NCT04071704.

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Accepted/In Press date: 3 April 2022
Published date: 20 April 2022
Additional Information: Funding Information: This study is funded by a research grant of the EORTC Quality of Life Group (QLG; grant no. 003-2018). Publisher Copyright: © 2022, The Author(s). Copyright: Copyright 2022 Elsevier B.V., All rights reserved.
Keywords: Gynaecological sarcoma, Health-related quality of life, Patient-reported outcomes, Soft tissue sarcoma, Uterine sarcoma

Identifiers

Local EPrints ID: 457107
URI: http://eprints.soton.ac.uk/id/eprint/457107
ISSN: 1477-7525
PURE UUID: 88b2d56a-57c3-44db-9f62-95bc146bdc5f
ORCID for Samantha C. Sodergren: ORCID iD orcid.org/0000-0001-8755-146X

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Date deposited: 24 May 2022 16:37
Last modified: 24 Jul 2022 01:45

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Contributors

Author: Dide Den Hollander
Author: Emma Lidington
Author: Susanne Singer
Author: Samer Salah
Author: Marco Fiore
Author: Charlotte Benson
Author: Ingrid M. E. Desar
Author: Vivian W. G. Burgers
Author: Olga Husson
Author: Winette T. A. Van Der Graaf

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