{
  "abstract": "Purpose\n\nThis 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\n\nA 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\n\nThe 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\n\nThis 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.",
  "abstract_shown": true,
  "affiliations": [
    "Department of Obstetrics and Gynecology, Catharina Hospital, Michelangelolaan 2, 5623 EJ, Eindhoven, The Netherlands.",
    "Faculty of Health, Medicine & Life Sciences, Maastricht University, Universiteitssingel 40, 6229 ER, Maastricht, The Netherlands.",
    "Department of Plastic and Reconstructive Surgery, Catharina Hospital, Michelangelolaan 2, 5623 EJ, Eindhoven, The Netherlands.",
    "Department of Obstetrics and Gynecology, University Medical Centre Groningen, University of Groningen, Hanzeplein 1, 9713 GZ, Groningen, The Netherlands.",
    "Department of Obstetrics and Gynecology, Cancer Center Amsterdam, Amsterdam University Medical Centre, Location VUMC, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands.",
    "Netherlands Comprehensive Cancer Organization, Heidelberglaan 7, 3584 CS, Utrecht, The Netherlands.",
    "Department 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.",
    "Department of Obstetrics and Gynecology, Catharina Hospital, Michelangelolaan 2, 5623 EJ, Eindhoven, The Netherlands. edith.v.esch@catharinaziekenhuis.nl.",
    "Department of Gynecologic Oncology, Erasmus Medical Center, Erasmus MC Cancer Center, Wytemaweg 80, 3015 CN, Rotterdam, The Netherlands. edith.v.esch@catharinaziekenhuis.nl.",
    "Center of Research On Psychological and Somatic Disorders, Tilburg University, Warandelaan 2, 5037 AB, Tilburg, The Netherlands."
  ],
  "article_type": "research article",
  "arxiv": null,
  "author_total": 11,
  "authors": [
    {
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        0
      ],
      "name": "Astrid Machielsen"
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      "name": "Nikki Meijer"
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    {
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        0
      ],
      "name": "Jessy van Dongen"
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    {
      "affs": [
        0
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      "name": "Dorry Boll"
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    {
      "affs": [
        2
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      "name": "Emiel van Haren"
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    {
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        3
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      "name": "Maaike Oonk"
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      "name": "Johanna Annemijn W M Aarts"
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      "name": "Simone Oerlemans"
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      "name": "Merel Kimman",
      "orcid": "0000-0002-5717-5704"
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    {
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        7,
        8
      ],
      "name": "Edith van Esch",
      "orcid": "0000-0001-7387-5922"
    },
    {
      "affs": [
        5,
        9
      ],
      "name": "Nicole Ezendam"
    }
  ],
  "bibtex": "https://research.draconitic.com/paper/9e0psq8pkn0rt.bib",
  "cited_by": 0,
  "doi": "10.1007/s00520-026-11270-0",
  "fulltext_url": "https://europepmc.org/articles/PMC13642464",
  "id": "9e0psq8pkn0rt",
  "issns": [
    "0941-4355",
    "1433-7339"
  ],
  "landing_url": "https://europepmc.org/article/MED/42837010",
  "language": "eng",
  "licence": "CC-BY",
  "licence_label": "CC BY",
  "licence_source": "article",
  "licence_url": "https://creativecommons.org/licenses/by/4.0/",
  "metadata_licence": null,
  "native_subjects": [
    [
      "openalex",
      "3312|Delphi Technique in Research"
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  "openalex": "W7220743937",
  "pdf_url": "https://europepmc.org/articles/PMC13642464?pdf=render",
  "pmcid": "PMC13642464",
  "pmid": "42837010",
  "published": "2026-10-06",
  "publisher": null,
  "ris": "https://research.draconitic.com/paper/9e0psq8pkn0rt.ris",
  "sources": [
    {
      "first_seen": "2026-10-30T12:18:03Z",
      "native_id": "MED:42837010",
      "source": "europepmc",
      "url": "https://europepmc.org/article/MED/42837010"
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  "subjects": [
    {
      "field": "medicine",
      "origin": "journal-openalex:F27",
      "subfield": "general"
    }
  ],
  "title": "Determining core quality of life outcomes for patients with vulvar cancer and their partners: a Delphi consensus study.",
  "title_text": "Determining core quality of life outcomes for patients with vulvar cancer and their partners: a Delphi consensus study.",
  "type": "peer-reviewed",
  "updated_at": "2026-10-30T12:18:03Z",
  "url": "https://research.draconitic.com/paper/9e0psq8pkn0rt",
  "venue": "Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer",
  "versions": []
}