The research, led by Astrid Machielsen of Catharina Hospital Eindhoven and colleagues across multiple Dutch centers, was conducted between December 2021 and March 2024 and followed a rigorous three-step methodology aligned with the COMET Initiative, the international standard for core outcome set development. First, the team performed a systematic literature review of studies published between 2010 and 2021 to catalog the questionnaires already in use. That search identified 301 records, of which 46 articles met eligibility criteria, and revealed a fragmented measurement landscape: 46 different questionnaires had been deployed to assess quality of life, with the Female Sexual Function Index and the EORTC QLQ-C30 each appearing in ten studies, followed by the FACT-V, FACT-G, and SF-12. No single instrument, and no agreed set of outcomes, dominated the field.

The second step brought patients, partners, and healthcare professionals directly into the process. The researchers conducted 28 semi-structured telephone interviews with ten patients treated for vulvar cancer within the previous two years, eight partners, and ten healthcare professionals including gynecologic oncologists, radiation therapists, oncologists, plastic surgeons, and physician assistants. Interviewers, who had no prior clinical relationship with participants to reduce bias, presented established questionnaires and probed for what was missing. The conversations surfaced concepts that standard instruments had never captured: the ability to cycle or wear tight clothing, feelings of comfort looking at and touching one’s own genital area, vaginal odor, changes in genital sensation, and the impact of surgery on entering new relationships. From these interviews, the team extracted 55 patient outcomes and 23 partner outcomes to carry forward.

The third and decisive step was a two-round online Delphi study, run between March and November 2023 using DelphiManager software developed by the COMET Initiative. Seventy participants registered for the first round: 34 patients, 12 partners, and 24 healthcare professionals. Each participant rated the importance of every outcome on a ten-point Likert scale, with consensus criteria defined in advance. An outcome was deemed ‘consensus in’ if at least 70 percent of participants scored it as very important, between 7 and 10, and fewer than 15 percent scored it as not important, between 1 and 3. Outcomes failing to reach agreement in round one were re-presented in round two alongside an anonymized graphical summary of how the other groups had rated them, allowing participants to revise their own scores in light of the collective view.

The patient Delphi proved rich and revealing. Of the 55 outcomes presented in the first round, 28 achieved consensus in, five were voted out, and 22 remained contested, with disagreement concentrated in the domains of sexual functioning and delivery of care. Participants also proposed four new outcomes: removal of part of the clitoris, vaginal odor, change in genital sensation, and the impact on entering new relationships. After the second round and a final online consensus meeting attended by eight patients and five healthcare professionals, the researchers consolidated four overlapping fear-of-recurrence items into a single outcome and settled on a final patient-centered core outcome set of 45 outcomes. These span physiological functioning and physical symptoms, physical, sexual, and emotional functioning, global quality of life, and information provision.

Notably, the set includes outcomes that are rarely measured in cancer research generally: wound healing, body image, and fear of recurrence. During the consensus meeting, patients explained that lichen sclerosus, a chronic inflammatory skin condition, is intertwined with their fear that symptoms signal returning cancer, and that the inability to wear tight clothes after surgery carries a persistent sense of embarrassment, particularly when complicated by visible lymphedema. Patients also clarified that while sexuality matters deeply, detailed discussions are not always wanted at every visit; instead, the topic should be revisited periodically, because needs change over time. Communication about sexuality, they emphasized, should extend beyond partners to include healthcare professionals themselves.

The partner results were unexpectedly spare. The partner Delphi began with 23 outcomes, but after two rounds and a planned consensus meeting that was canceled due to low participation, the final partner-centered set contained just six outcomes, all related to information provision rather than partners’ own quality of life. Partners repeatedly affirmed that the patient should be the primary focus of care, and the majority of healthcare professionals agreed, with some cautioning that formally assessing partner well-being could raise expectations of treating the partner as a patient. Partners did describe real worries, including concern about their partner’s sexual pleasure and fear of hurting them during sexual activity, but they saw an additional questionnaire during aftercare as offering limited value. The researchers concluded that a full partner-centered outcome set is unnecessary, and that the six information-related outcomes can be assessed with the EORTC QLQ-INFO25.

A crucial practical contribution of the study is its mapping of the 45 patient outcomes onto existing validated instruments. The researchers recommend a combination of scales and items from the EORTC QLQ-C30, the vulvar cancer module QLQ-VU34, the sexual health module SH22, and INFO25, together with the FACT-V and the WOUND-Q, which covers wound-related outcomes. Because all EORTC questionnaires share a similar answering format, assembling them into a coherent assessment is feasible. Some outcomes still lack any dedicated measure, including cycling, wearing clothes, feeling comfortable with the genital area, intimacy, and the impact of wounds on quality of life. For these, the team identified partial solutions from the EORTC item bank, such as item Q273 for tight clothing and item Q364 or the Fear of Cancer Recurrence Inventory for lichen sclerosus-related fear, and recommended the Maudsley Marital Questionnaire where deeper exploration of the patient-partner interaction is needed.

The authors are candid about the limitations. Vulvar cancer’s low incidence constrained the sample size, and the Delphi process, though iterative and inclusive, suffered attrition of roughly 20 to 25 percent between rounds, which may have narrowed the diversity of perspectives. No single comprehensive questionnaire yet exists that captures all 45 outcomes, meaning clinics must combine instruments. The EORTC QLQ-VU34, while promising, is still in phase four of development and validation and was designed for clinical trials rather than routine care. These caveats notwithstanding, the adherence to COMET guidance, the anonymity of Delphi ratings, and the mixed-methods foundation of literature review plus qualitative interviews give the findings substantial credibility and reproducibility.

The implications reach well beyond the Netherlands. By defining, from the patient’s own vantage point, what quality of life after vulvar cancer surgery actually consists of, the study gives trialists a common language for comparing interventions, reduces reporting bias, and gives clinicians a concrete checklist for aftercare conversations that too often skip sexuality, body image, and fear of recurrence. Patient-reported outcome measures have previously been linked to improved symptom management, particularly when results are discussed with patients, and this core outcome set provides the framework for doing so systematically. The next step is already underway: the outcome set will be integrated into the IMPACT-V project, a Dutch quality improvement initiative for vulvar cancer care, where it will enable ongoing evaluation of whether daily clinical practice becomes genuinely responsive to the outcomes patients themselves have declared most important.

Subject of Research: Development of a patient-centered core outcome set for health-related quality of life after vulvar cancer surgery using a Delphi consensus method

Article Title: Determining core quality of life outcomes for patients with vulvar cancer and their partners: a Delphi consensus study

Article References: Machielsen, A., Meijer, N., van Dongen, J., Boll, D., van Haren, E., Oonk, M., Aarts, J. A. W. M., Oerlemans, S., Kimman, M., van Esch, E., & Ezendam, N. (2026). Determining core quality of life outcomes for patients with vulvar cancer and their partners: a Delphi consensus study. Supportive Care in Cancer, 34(10), Article 1061. https://doi.org/10.1007/s00520-026-11270-0

Image Credits: AI Generated

DOI: 10.1007/s00520-026-11270-0

Keywords: vulvar cancer, core outcome set, quality of life, Delphi study, patient-reported outcomes, gynecologic oncology, sexual functioning, body image, fear of recurrence, EORTC questionnaires, supportive care, partners of cancer patients

Vulvar cancer is not among the most common malignancies, but its impact on those diagnosed is profound. In the Netherlands, approximately 450 women receive the diagnosis each year, and in roughly one quarter of those cases the tumor involves the clitoris or the tissue immediately surrounding it. Because the disease is located in an area of dense nerve supply and intimate significance, surgery that saves a life can simultaneously alter a patient’s sexual function, body image, and overall quality of life in ways that standard oncological follow-up has historically done little to address. Gynecologic oncologist Mieke ten Eikelder of Radboudumc, who co-developed the new technique, describes the previous standard bluntly: when the tumor sits in or around the clitoris, surgeons sometimes have to remove part of it, and until now the wound was simply closed afterward, with little attention paid to whether orgasm would still be possible.

The new operation, described in the journal Gynecologic Oncology in a paper titled Clitoral reconstructive surgery for patients with vulvar carcinoma, was developed jointly by ten Eikelder and plastic surgeon Tim Nijhuis. Its central insight is that even after a tumor has been removed from the clitoral region, the underlying nerve bundles that carry sensory information can often be preserved and redirected. Rather than accepting the loss of the visible clitoral tip and the sensation that depends on it, the surgical team releases those nerve bundles and repositions them so that they converge to create a new clitoral tip. In effect, the sensory apparatus of the clitoris is gathered and rebuilt rather than discarded, giving the nerve fibers a physical structure through which they can once again generate sensation.

The second key element of the technique is the material used to cover and shape the reconstructed tip. The surgeons use a small graft of buccal mucosa, the moist tissue lining the inside of the cheek. This choice is deliberate and technically elegant. Buccal mucosa closely resembles the tissue found naturally around the vulva in both texture and behavior, making it far better suited to the genital environment than skin taken from elsewhere on the body. Grafts of this type integrate well, remain supple and moist, and provide a covering that mimics the original anatomy closely enough to support rather than blunt sensation. The combination of repositioned nerve bundles and a mucosal graft is what allows the reconstruction to preserve clitoral feeling rather than merely restoring a cosmetic contour.

From the patient’s perspective, one of the most remarkable aspects of the procedure is how little it adds to the existing cancer operation. The reconstruction extends the surgery by only about fifteen minutes. That is a strikingly small increment given what the procedure returns: for women whose tumors would otherwise have cost them clitoral sensation permanently, a quarter of an hour of additional operating time now stands between losing sexual function and keeping a realistic chance of regaining it. Because the reconstruction is performed in the same anesthetic episode as the tumor removal, patients do not face a second major operation, a second hospital stay, or a second period of recovery from surgery.

The early clinical results justify the enthusiasm. Among the first 23 women with vulvar cancer who underwent the reconstruction, ninety percent were able to achieve a clitoral orgasm again after surgery. Sensation typically returned between three and six months after the operation, a timeline that reflects the slow but reliable process of nerve recovery and tissue healing. The surgeons note that the recovery curve is not linear in its early phase. Initially, the reconstructed clitoris may be overly sensitive, or conversely less sensitive than before, but recovery is generally optimal after one year. In most women, sensation ultimately returns to a level comparable to what it was before the cancer surgery, an outcome that would have been considered unattainable only a few years ago.

The forty-year lag between penile and clitoral reconstruction is itself a point the Dutch team makes explicitly, and it speaks to a broader pattern in surgical history. Procedures that restore urinary and sexual function in men were developed, standardized, and taught in training programs long before equivalent attention was paid to female genital reconstruction beyond purely cosmetic or urinary aims. Part of the explanation lies in surgical anatomy: the penis offers a longer structure with accessible nerve and vessel pedicles that lend themselves to tubed flaps, while the clitoris is small, densely innervated, and technically demanding to rebuild in miniature. Part of the explanation, however, lies in how seriously medicine has historically taken female sexual function as an outcome worth measuring and treating. The Radboudumc work signals a shift in that regard, treating orgasm and genital sensation as legitimate reconstructive goals on par with continence or limb function.

The implications extend beyond cancer care. The researchers point out that the same reconstructive principle, repositioning preserved nerve bundles to create a functional clitoral tip and covering it with buccal mucosa, may also help women who have suffered genital mutilation. In those cases, as in cancer surgery, the sensory nerves often remain even when the external anatomy has been removed or altered, and a technique designed to gather those nerves into a new structure could offer a path to restored sensation for a population that has almost never been offered surgical options. While the published experience so far concerns women treated for vulvar carcinoma, the potential application to female genital mutilation gives the technique a reach that could eventually touch millions of women worldwide.

The procedure is now being introduced across the Netherlands as part of a structured scientific research program rather than as an uncontrolled spread of a new operation. Alongside Radboudumc, eight other Dutch hospitals treat vulvar cancer, and all of them are participating in a follow-up project in which gynecologic oncologists and plastic surgeons will be trained in the new technique. Nijhuis and ten Eikelder are also currently training specialists from other countries, an early sign that the developers intend the method to become an international standard rather than the specialty of a single center. This training-first approach reflects a growing consensus in surgical innovation that a new operation is only as good as its dissemination, and that early standardization protects patients from poorly executed imitations.

For all the promise, the researchers themselves are careful about the limits of the current evidence. The initial series of 23 patients is small, and the ninety percent figure, while remarkable, comes from early follow-up rather than long-term study. With financial support from the Dutch Cancer Society, the team will work together with other Dutch hospitals to determine whether the reconstruction truly improves sexual function and quality of life in a rigorous, multicenter evaluation, and how the technique can be safely integrated into everyday clinical care. Those studies will need to confirm that the sensory gains persist over years, that the reconstructed tissue remains healthy over the long term, and that the procedure can be reproduced reliably by surgeons trained outside the originating center. Even with those caveats, the direction of travel is clear. An operation that did not exist a few years ago has given the first group of patients back a dimension of their lives that cancer surgery had taken away, and it has done so with a fifteen-minute addition to the procedure they needed anyway. Forty years after the first penile reconstruction, the surgical playbook has finally caught up, and the women who come after these first 23 patients will enter vulvar cancer treatment knowing that survival and sexual function no longer have to be an either-or choice.

Subject of Research: Clitoral reconstructive surgery for patients with vulvar carcinoma

Article Title: New surgical technique restores the clitoris after treatment for vulvar cancer

Article References: New surgical technique restores the clitoris after treatment for vulvar cancer. (n.d.). Original publication

Image Credits: AI Generated

DOI: Not provided

Keywords: vulvar cancer, clitoral reconstruction, gynecologic oncology, plastic surgery, sexual function, nerve repositioning, buccal mucosa graft, Radboudumc, organ preservation, reconstructive surgery, quality of life, surgical

The study, published in Supportive Care in Cancer, used a research approach known as social listening, in which investigators passively collect and analyze user-generated content from online platforms rather than recruiting participants directly. This method is particularly valuable for stigmatized conditions, where shame and taboo can prevent women from voicing their concerns in clinical settings or even to researchers. Vulvar cancer and its precursor condition, vulvar intraepithelial neoplasia, or VIN, carry a heavy burden of stigma that contributes to diagnostic delays of six to eleven months. Because so many women hesitate to discuss intimate symptoms with anyone, the questions they post anonymously online offer a rare, unfiltered window into what they most need to know before they ever reach a healthcare provider.

To build that window, the team screened 4,859 posts across six publicly accessible platforms: kanker.nl and a recorded question-and-answer webinar hosted by the Dutch patient association Olijf in the Netherlands; the Macmillan Cancer Support online community and Cancer Chat UK, a moderated forum run by Cancer Research UK, in the United Kingdom; and Inspire health communities and the American Cancer Society Cancer Survivors Network in the United States. Posts ranged from 2008 to early 2026, with no time limit applied. From the screened material, 619 questions met inclusion criteria, where a question was broadly defined as any post expressing an explicit or implicit informational need, including accounts of symptoms that were clearly seeking reassurance. The researchers then applied inductive qualitative content analysis, allowing themes to emerge from the questions themselves rather than imposing a pre-existing framework, with a second researcher independently coding all posts to guard against subjective interpretation.

Seven overarching themes emerged: causes, early signs, diagnostics, treatments, after treatment, long-term concerns, and psychosocial impact. Three of these dominated the dataset. Early signs and after treatment each accounted for 19 percent of coded segments, and diagnostics for 17 percent. Within early signs, the symptom recognition subtheme alone represented 81 percent of codes in that theme and 16 percent of the entire dataset, making it the single most frequently expressed informational need. The vast majority of these posts—84 percent—combined descriptions of multiple concurrent symptoms with an explicit worry about vulvar cancer or VIN. Lumps or nodules were the most commonly reported triggers for concern, followed by changes in skin color and persistent itching. One typical post described an itchy, darker, calloused patch near the vaginal opening and asked bluntly whether it could be vulvar cancer.

The diagnostics theme revealed a different kind of confusion. Women struggled to interpret the specialized terminology of their results, asking whether VIN 3 was a cancer stage, whether carcinoma in situ was the same thing as VIN 3, and what the difference actually was between VIN 3 and vulvar cancer. Result interpretation questions accounted for one-third of codes in this theme, and questions about which diagnostic tests are used accounted for another quarter. Meanwhile, a smaller but telling subtheme concerned waiting times, particularly the anxious wait for biopsy results. Notably, when the researchers mapped all themes onto a six-phase patient journey running from initial symptom recognition through diagnosis, treatment, wound care, and follow-up, informational needs refused to stay within neat boundaries. Recognition uncertainty and psychosocial concerns recurred across the entire trajectory, peaking before formal diagnosis.

After treatment, the questions shifted but did not diminish. Postoperative concerns made up half of all codes in the after-treatment theme, with women predominantly uncertain whether their symptoms represented normal recovery or wound-related complications such as infections, delayed healing, or lymphedema. One woman described unbelievable swelling and severe pain after a vulvectomy and lymph node removal, asking simply whether this was normal. Perhaps the most surprising finding was that 4 percent of the entire dataset consisted of postoperative questions from women who had not yet undergone surgery—more than twice as frequent as questions about the surgical procedure itself. These women, facing operations in the coming days or weeks, were already searching for accounts of how others coped with recovery, a pattern that points to a gap in perioperative communication that clinic-based research had not previously identified.

When the investigators quantified recognition-related codes across the dataset—those explicitly concerned with interpreting bodily changes as normal or abnormal—they found 141 such codes among 703 total coded segments, or 20 percent. The large majority, 77 percent, concerned pre-diagnostic symptom appraisal, while smaller but persistent proportions concerned postoperative wound complication recognition, at 15 percent, and recurrence recognition during follow-up, at 8 percent. This means one in six questions in the study originated from women not yet diagnosed, a population largely invisible to clinic-based research. The finding aligns with prior qualitative work documenting how women struggle to interpret unfamiliar bodily changes, and with evidence of diagnostic delays and calls for clinical guidance on early recognition of VIN. It also fits with clinical data showing that wound complications affect nearly half of women after vulvar surgery, explaining why postoperative uncertainty features so prominently.

The psychosocial dimensions of these questions were harder to measure but impossible to ignore. Because coding was restricted to explicit questions, posts containing emotional content without a corresponding question were not counted, likely leading to underrepresentation of psychological burden. Even so, within the symptom recognition subtheme, 30 percent of posts contained expressions of anxiety, worry, uncertainty, loneliness, or feeling overwhelmed. Questions about sexuality and body image recurred from the treatment phase through follow-up, with women expressing fears about asymmetry after surgery, pain during intercourse, and profound concerns about femininity and desirability. A subset of women explicitly requested visual information to support symptom interpretation, citing difficulty differentiating benign from concerning findings using existing online resources—a request the researchers identify as a concrete development priority for illustrated symptom guides, self-examination resources, and postoperative healing timelines.

The authors argue that these findings challenge diagnosis-centric communication models, which concentrate educational resources at the point of treatment, and instead call for phase-integrated supportive care. In practice, this means initiating symptom-related communication before diagnosis, providing structured preoperative information about recovery and wound care, developing visually supported educational materials, and maintaining longitudinal communication that addresses psychosocial concerns, sexuality, and body image across the full care trajectory. Public awareness campaigns reducing stigma, and public health messaging that extends HPV-related communication beyond cervical cancer to explicitly address vulvar cancer and VIN risk, could help reach women before they ever enter a clinic. The study has limitations: the sample was self-selected and digitally literate, the 2008-to-2026 collection window introduces temporal heterogeneity, and the descriptive design precludes causal inference. But its central message is clear and urgent: the most persistent unmet need in vulvar cancer care is helping women answer, at every stage of the journey, the deceptively simple question of whether what they see and feel is normal.

Subject of Research: Informational needs of women with vulvar cancer and VIN identified through analysis of online health forum questions

Article Title: Informational needs in vulvar cancer and precursor conditions: a social listening study

Article References: Wouters, D., van Lynden van Sandenburg, M. V. G. L., Hulscher, K. K., van Esch, E. M. G., & Aarts, J. W. M. (2026). Informational needs in vulvar cancer and precursor conditions: a social listening study. Supportive Care in Cancer, 34(10), Article 1001. https://doi.org/10.1007/s00520-026-11240-6

Image Credits: AI Generated

DOI: 10.1007/s00520-026-11240-6

Keywords: vulvar cancer, VIN, social listening, recognition uncertainty, patient education, supportive care, health communication, diagnostic delay, wound complications, symptom appraisal, online forums, qualitative research