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Observational Study
. 2022 Apr 20;20(1):65.
doi: 10.1186/s12955-022-01971-5.

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

Dide den Hollander  1   2 , Emma Lidington  3 , Susanne Singer  4   5 , Samantha C Sodergren  6 , Samer Salah  7 , Marco Fiore  8 , Charlotte Benson  3 , Ingrid M E Desar  2 , Vivian W G Burgers  1 , Olga Husson #  9   10 , Winette T A van der Graaf #  1   11
Affiliations
Observational Study

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

Dide den Hollander et al. Health Qual Life Outcomes. .

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.

Keywords: Gynaecological sarcoma; Health-related quality of life; Patient-reported outcomes; Soft tissue sarcoma; Uterine sarcoma.

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Conflict of interest statement

The authors have no conflict of interest to declare.

References

    1. Storey L, Fern LA, Martins A, Wells M, Bennister L, Gerrand C, et al. A critical review of the impact of sarcoma on psychosocial wellbeing. Sarcoma 2019;2019(9730867). - PMC - PubMed
    1. McDonough J, Eliott J, Neuhaus S, Reid J, Butow P. Health-related quality of life, psychosocial functioning, and unmet health needs in patients with sarcoma: a systematic review. Psycho Oncol. 2019;28:653–664. doi: 10.1002/pon.5007. - DOI - PubMed
    1. Hosh M, Antar S, Nazzal A, Warda M, Gibreel A, Refky B. Uterine sarcoma: analysis of 13,089 cases based on surveillance, epidemiology, and end results database. Int J Gynecol Cancer. 2016;26(6):1098–1104. doi: 10.1097/IGC.0000000000000720. - DOI - PubMed
    1. Gronchi A, Miah AB, Dei Tos AP, Abecassis N, Bajpai J, Bauer S, et al. Soft tissue and visceral sarcomas: ESMO-EURACAN-GENTURIS Clinical Practice Guidelines for diagnosis, treatment and follow-up. Ann Oncol. 2021;32(11):1348–1365. doi: 10.1016/j.annonc.2021.07.006. - DOI - PubMed
    1. Reed NS, Mangioni C, Malmström H, Scarfone G, Poveda A, Pecorelli S, et al. Phase III randomised study to evaluate the role of adjuvant pelvic radiotherapy in the treatment of uterine sarcomas stages I and II: an European Organisation for Research and Treatment of Cancer Gynaecological Cancer Group Study (protocol 55874) Eur J Cancer. 2008;44(6):808–818. doi: 10.1016/j.ejca.2008.01.019. - DOI - PubMed

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