Determining core quality of life outcomes for patients with vulvar cancer and their partners: a Delphi consensus study.
10 affiliations
- 1Department of Obstetrics and Gynecology, Catharina Hospital, Michelangelolaan 2, 5623 EJ, Eindhoven, The Netherlands.
- 2Faculty of Health, Medicine & Life Sciences, Maastricht University, Universiteitssingel 40, 6229 ER, Maastricht, The Netherlands.
- 3Department of Plastic and Reconstructive Surgery, Catharina Hospital, Michelangelolaan 2, 5623 EJ, Eindhoven, The Netherlands.
- 4Department of Obstetrics and Gynecology, University Medical Centre Groningen, University of Groningen, Hanzeplein 1, 9713 GZ, Groningen, The Netherlands.
- 5Department of Obstetrics and Gynecology, Cancer Center Amsterdam, Amsterdam University Medical Centre, Location VUMC, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands.
- 6Netherlands Comprehensive Cancer Organization, Heidelberglaan 7, 3584 CS, Utrecht, The Netherlands.
- 7Department of Clinical Epidemiology and Medical Technology Assessment, Care and Public Health Research Institute, Maastricht University Medical Centre, P. Debyelaan 25, 6229 HX, Maastricht, The Netherlands.
- 8Department of Obstetrics and Gynecology, Catharina Hospital, Michelangelolaan 2, 5623 EJ, Eindhoven, The Netherlands. [email protected].
- 9Department of Gynecologic Oncology, Erasmus Medical Center, Erasmus MC Cancer Center, Wytemaweg 80, 3015 CN, Rotterdam, The Netherlands. [email protected].
- 10Center of Research On Psychological and Somatic Disorders, Tilburg University, Warandelaan 2, 5037 AB, Tilburg, The Netherlands.
Abstract
Purpose
This study aimed to develop a patient-centered and partner-centered core outcome set (COS) reflecting the health-related quality of life (HRQoL) outcomes most important to patients with vulvar cancer following surgical treatment and their partners. Identifying these outcomes enables healthcare professionals to better support patients' HRQoL during and after treatment.Methods
A mixed-methods study conducted in the Netherlands from December 2021 to March 2024 among patients with vulvar cancer, their partners, and healthcare professionals involved in their care. The study followed a three-step approach: (1) a literature review to identify HRQoL concepts and existing questionnaires; (2) interviews with patients, partners, and healthcare professionals to extract important outcomes; and (3) an online Delphi study, followed by an online consensus meeting, to prioritize outcomes. The primary outcomes were the development of patient-centered and partner-centered COS and the identification of validated questionnaires for HRQoL assessment.Results
The patient-centered COS comprised 45 outcomes in the domains of physiological functioning, including physical symptoms, as well as physical, sexual, and emotional functioning. The COS also included topics that are less often included in studies, i.e., wound healing, body image, and fear of recurrence. The partner-centered COS included six outcomes only focusing on information provision, not on their own HRQoL. Recommended patient HRQoL questionnaires were (scales from) EORTC QLQ-C30/VU34/SH22/INFO25 and WOUND-Q.Conclusions
This is the first patient-centered COS for vulvar cancer, enabling targeted HRQoL assessments and improved daily clinical care. The provision of information was the only aspect deemed important as an outcome for partners.
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BibTeX
@article{machielsen2026determining,
title = {{Determining core quality of life outcomes for patients with vulvar cancer and their partners: a Delphi consensus study.}},
author = {Astrid Machielsen and Nikki Meijer and Jessy van Dongen and Dorry Boll and Emiel van Haren and Maaike Oonk and Johanna Annemijn W M Aarts and Simone Oerlemans and Merel Kimman and Edith van Esch and Nicole Ezendam},
journal = {Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer},
year = {2026},
month = oct,
doi = {10.1007/s00520-026-11270-0},
url = {https://europepmc.org/article/MED/42837010},
note = {CC BY},
}
RIS
TY - JOUR
TI - Determining core quality of life outcomes for patients with vulvar cancer and their partners: a Delphi consensus study.
AU - Astrid Machielsen
AU - Nikki Meijer
AU - Jessy van Dongen
AU - Dorry Boll
AU - Emiel van Haren
AU - Maaike Oonk
AU - Johanna Annemijn W M Aarts
AU - Simone Oerlemans
AU - Merel Kimman
AU - Edith van Esch
AU - Nicole Ezendam
PY - 2026
DA - 2026/10/06
JO - Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer
DO - 10.1007/s00520-026-11270-0
UR - https://europepmc.org/article/MED/42837010
AB - Purpose This study aimed to develop a patient-centered and partner-centered core outcome set (COS) reflecting the health-related quality of life (HRQoL) outcomes most important to patients with vulvar cancer following surgical treatment and their partners. Identifying these outcomes enables healthcare professionals to better support patients' HRQoL during and after treatment.Methods A mixed-methods study conducted in the Netherlands from December 2021 to March 2024 among patients with vulvar cancer, their partners, and healthcare professionals involved in their care. The study followed a three-step approach: (1) a literature review to identify HRQoL concepts and existing questionnaires; (2) interviews with patients, partners, and healthcare professionals to extract important outcomes; and (3) an online Delphi study, followed by an online consensus meeting, to prioritize outcomes. The primary outcomes were the development of patient-centered and partner-centered COS and the identification of validated questionnaires for HRQoL assessment.Results The patient-centered COS comprised 45 outcomes in the domains of physiological functioning, including physical symptoms, as well as physical, sexual, and emotional functioning. The COS also included topics that are less often included in studies, i.e., wound healing, body image, and fear of recurrence. The partner-centered COS included six outcomes only focusing on information provision, not on their own HRQoL. Recommended patient HRQoL questionnaires were (scales from) EORTC QLQ-C30/VU34/SH22/INFO25 and WOUND-Q.Conclusions This is the first patient-centered COS for vulvar cancer, enabling targeted HRQoL assessments and improved daily clinical care. The provision of information was the only aspect deemed important as an outcome for partners.
SN - 0941-4355
SN - 1433-7339
ER -