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

Muscle dysmorphia is a condition characterized by an intense preoccupation with muscularity, significant dissatisfaction with one’s body or perceived lack of muscle mass, and impairment in social, psychological, or everyday functioning. Often described informally as a belief that one is never muscular enough, it has traditionally been studied in the context of body dissatisfaction, compulsive exercise, restrictive eating, and the pursuit of muscularity through training and, in some cases, performance-enhancing substances. The new study broadens that frame considerably. Its authors report that the condition’s symptoms were linked with difficulties including anxiety during sex, lack of sexual interest or enjoyment, lack of arousal, difficulty reaching climax, physical pain during sex, and difficulty getting or maintaining an erection. Only one of the eight sexual difficulties measured in the study was not associated with muscle dysmorphia symptoms, underscoring how pervasive the relationship appears to be across multiple dimensions of sexual functioning.

The study’s most striking finding concerns appearance-related distress. Within the cluster of muscle dysmorphia symptoms, greater dissatisfaction with appearance and greater discomfort with one’s own body were consistently linked with a wide range of sexual difficulties. The single strongest association observed was with feeling anxious during sex. This pattern makes conceptual sense within existing models of sexual response, which emphasize that attention, comfort, and a sense of safety are central to arousal and enjoyment. When cognitive resources are consumed by self-monitoring and evaluation of one’s body, the capacity to remain psychologically present during intimacy can be compromised, a phenomenon researchers often describe in terms of spectatoring, or mentally observing oneself from the outside rather than participating in the experience.

“One possible explanation is that intense body dissatisfaction and self-consciousness make it more difficult to be present and comfortable during sexual experiences,” said Ganson. “If someone is highly focused on how their body looks or worried about being seen by a partner, those thoughts may interfere with sexual interest, arousal, enjoyment, and functioning.” This mechanism, in which appearance anxiety disrupts the attentional and emotional conditions required for satisfying sexual experiences, aligns with a growing body of evidence connecting body image with sexual well-being more generally. Persistent body dissatisfaction, shame, self-consciousness, and preoccupation with appearance have all been shown in prior research to make it more difficult for individuals to feel comfortable, engaged, and emotionally available during sexual encounters.

The implications of the study reach beyond psychological mechanisms alone. The behaviors that frequently accompany the pursuit of muscularity may themselves contribute to sexual difficulties. Excessive exercise can produce physical fatigue and, when combined with restrictive eating, may leave the body without the energy reserves needed for healthy physiological functioning, including sexual response. More concerning still is the use of anabolic-androgenic steroids and other muscle-enhancing substances, which are known to disrupt the endocrine system. Exogenous steroid use can suppress natural testosterone production, and discontinuation can produce hormonal disturbances that affect libido, erectile function, and mood. The study’s authors note that such behaviors associated with muscularity pursuit may play a role in the sexual difficulties observed among those with greater muscle dysmorphia symptoms, although the cross-sectional nature of the data means the precise pathways require further investigation.

“Muscle dysmorphia is often understood in terms of body dissatisfaction, compulsive exercise, or the pursuit of muscularity, but our findings suggest that its impacts may extend into intimate and sexual experiences as well,” Ganson said. “Sexual health should be part of the conversation when clinicians are assessing boys and men with significant muscle dysmorphia symptoms.” This recommendation carries practical weight for clinicians working in eating disorder services, student health centers, sports medicine, and general mental health care, populations in which muscle dysmorphia and related muscularity-oriented behaviors are increasingly recognized. Sexual health assessments are not routinely incorporated into body-image treatment, and the study suggests that this omission may leave an important dimension of patient suffering unaddressed.

The demographic scope of the research is notable. By including sexually active participants as young as 15 and as old as 35, the study captures a developmental window that spans adolescence, emerging adulthood, and established adulthood, periods during which sexual identity, romantic relationships, and body image are all in active formation. Adolescence in particular is a time when appearance concerns can be especially acute, and when early sexual experiences may shape long-term patterns of sexual confidence and comfort. The finding that body dissatisfaction and appearance anxiety related to muscle dysmorphia may be especially important to the sexual health of boys and young men suggests that interventions delivered early could have benefits that extend across multiple domains of health and well-being.

“Body image and sexual health are often treated as separate areas of health, but they may be deeply interconnected,” Ganson said. “For some boys and men, addressing distress about their bodies may also be important for understanding difficulties they are experiencing in their sexual lives.” This framing challenges the conventional siloing of sexual medicine, mental health, and body-image treatment. A young man presenting with erectile difficulties or low sexual desire might, in many clinical settings, be evaluated for vascular, hormonal, or pharmacological causes without any assessment of muscularity dissatisfaction or compulsive exercise. Conversely, a patient in treatment for muscle dysmorphia might never be asked about sexual functioning. The study suggests that each of these one-sided approaches risks missing connections that could be central to recovery.

For researchers, the findings open several avenues for future work. Longitudinal designs would help establish whether muscle dysmorphia symptoms precede sexual difficulties, follow from them, or reinforce one another in a reciprocal cycle. Studies that measure physiological indicators alongside self-reported difficulties could clarify how much of the association is psychological, how much is behavioral, and how much may be attributable to substance use. Research examining whether treatments that reduce body-image distress also improve sexual functioning would test the clinical significance of the association directly. The study’s publication in Body Image, a leading peer-reviewed journal in the field, reflects growing scientific interest in muscularity-oriented disordered eating and body-image concerns among males, populations that have historically been underrepresented in research that focused predominantly on thinness-oriented concerns among girls and women.

Overall, the study positions sexual functioning as a potentially important dimension of health for researchers and clinicians working with boys and young men experiencing muscle dysmorphia symptoms. Its message is straightforward but consequential: the distress produced by feeling insufficiently muscular does not remain confined to thoughts about appearance. It can follow young men into their most intimate moments, dampening interest, interfering with arousal, and generating anxiety precisely where comfort is most needed. Recognizing that connection, the authors argue, is a necessary step toward care that treats body image and sexual health not as separate territories, but as intertwined aspects of the same person’s well-being.

Subject of Research: Associations between muscle dysmorphia symptoms and sexual functioning among sexually active boys and young men

Article Title: Muscle dysmorphia symptoms linked with sexual difficulties among boys and young men

Article References: Muscle dysmorphia symptoms linked with sexual difficulties among boys and young men. (n.d.). Original publication

Image Credits: AI Generated

DOI: Not provided

Keywords: muscle dysmorphia, body image, sexual health, sexual functioning, boys and young men, appearance anxiety, body dissatisfaction, anabolic steroids, compulsive exercise, University of Toronto, Body Image journal, adolescent health