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2022-RA-226-ESGO Unmet needs of women with newly diagnosed vulvar cancer – a nationwide Swedish cohort study
  1. Diana Zach1,
  2. Elisabeth Åvall Lundqvist2,
  3. Henrik Falconer1,
  4. Preben Kjølhede3,
  5. Katja Stenström Bohlin4,
  6. Päivi Kannisto5,
  7. Henrike Häbel6,
  8. Pernille T Jensen7 and
  9. Angelique Flöter Rådestad8
  1. 1Gynecologic Oncology, Karolinska University Hospital, Stockholm, Sweden
  2. 2Oncology, Biomedical and Clinical Sciences, Linköping University, Linköping, Sweden
  3. 3Institution for Clinical and Experimental Medicine, Linköping University, Linköping, Sweden
  4. 4Department of Obstetrics and Gynecology, University of Gothenburg, Sahlgrenska Academy, Gothenburg, Sweden
  5. 5Department of Obstetrics and Gynecology, Lund University, Lund, Sweden
  6. 6Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden
  7. 7Division of Gynecological Cancer Surgery, Aarhus University Hospital, Aarhus, Denmark
  8. 8Hereditary Cancer, Karolinska University Hospital, Stockholm, Sweden


Introduction/Background Little is known about the unmet needs of women with vulvar cancer. The aim of this study was to explore the needs of women with vulvar cancer at the time of diagnosis.

Methodology This is a prospective, longitudinal nationwide cohort study investigating health-related quality of life in women with vulvar cancer. Eligible women were diagnosed with primary vulvar cancer between 2019 and 2021. Participants completed five validated instruments including 15 items from the Supportive Care Needs Survey Short Form (SCNS-SF34) before start of treatment, and during follow-up. Here, we present results from the baseline questionnaire.

Results 136 of 153 (89%) included women completed the baseline questionnaire. Median age was 69 years, 62% were living in a relationship, and 70% had one or more comorbidities. Most women (73%) were diagnosed at FIGO stages IA- II, 96% were treated by surgery. More than every second woman reported needs for eight of the 15 selected items of the SCNS. The most reported needs concerned information about treatment, side-effects, and improved self-care. Besides, two thirds of women needed help in managing the fear of cancer spread (figure 1). Expressing high needs for information and help with fear of cancer spread was associated with more comorbidities (information how to help yourself: OR 10.2 (95% CI 1.9 – 54.6); information about side-effects: OR 10.2 (95% CI 1.9 – 54.6); information about care: OR 5.4 (95% CI 1.9 – 25.5); fear of cancer spread: OR 15.9 (95% CI 1.8 – 140.6)), but not with age, partner status, or FIGO stage.

Abstract 2022-RA-226-ESGO Figure 1

Proportion of needs for 15 items of the supportive care needs survey short form

Conclusion Women with newly diagnosed vulvar cancer request predominantly information about treatment, side-effects, and improved self-care irrespective of age, partner status, or stage of disease. Women´s fear of cancer spread should be a central part of counselling at the time of diagnosis.

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