From existential uncertainty to a new mindset promoting recovery: Exploring the development of uncertainty experience in women with vulvar neoplasia - A qualitative longitudinal study.

BACKGROUND: Women with vulvar neoplasia continue to experience uncertainty up to six months post-surgery. Uncertainty in illness is considered a significant psychosocial stressor, that negatively influences symptom distress, self-management strategies and quality of life. According to the Reconceptualized Uncertainty in Illness Theory, the appraisal of uncertainty changes positively over time in chronic illness. We aimed at exploring whether and how the experience of uncertainty develops in women with vulvar neoplasia. METHODS: We selected a purposive sample of seven women diagnosed with vulvar neoplasia in four Swiss and one Austrian women's clinic. By means of a qualitative longitudinal study, we conducted 30 individual interviews at five points of time during one year after diagnosis. We applied Saldaña's analytical questions for longitudinal qualitative research. RESULTS: First, participants experienced uncertainty as an existential threat, then an inherent part of their illness, and finally a certainty. Women initially associated the existential threat with a high risk for suffering from severe health deteriorations. Participants that could reduce their individually assessed risk by adopting health promoting behaviors, accepted the remaining uncertainty. From now on they reframed uncertainty into a certainty. This new mindset was based on a belief of promoting recovery and reducing the risk of recurrence. CONCLUSIONS: The long-lasting and oscillating nature of uncertainty should receive attention in supportive oncology care. Uncertainty concerning existential issues is of special importance since it can inhibit a positive development of uncertainty experience.

Knowledge of Vulvar Anatomy and Self-examination in a Sample of Italian Women.

OBJECTIVE: The aim of the study was to investigate the knowledge of vulvar anatomy and vulvar self-examination (VSE) in a sample of Italian women attending a gynecology clinic. METHODS: For this original research from May to July 2019, 512 women attending the Lower Genital Tract Clinic at the Department of Surgical Sciences of the University of Torino were invited to participate in a 29-question survey about vulvar anatomy, VSE, and sociodemographic details. Data were analyzed using descriptive statistics. RESULTS: Of 512 patients, 500 completed the questionnaire (98% response rate). The mean age of respondents was 41 years (range = 17-77 years). Education level was evenly distributed between elementary, high school, and university graduates. Only 15% of interviewed women were able correctly sketching vulvar anatomy. Seventy-six percent of the women had not heard about VSE, and 61% of the women approach their genitalia with feelings of shame and embarrassment. Only 23% of the women would seek medical advice after identification of possible abnormalities during VSE. A majority (69%) of the women would like to have more information about VSE and vulvar health through educational videos and social media. CONCLUSIONS: Education about VSE may lead to earlier diagnosis of vulvar cancers and other pathologies. Further efforts are needed to disperse information about normal external female genital anatomy and VSE to achieve self-confidence among women.

Patient reported outcome measures among patients with vulvar cancer at various stages of treatment, recurrence, and survivorship.

OBJECTIVE: Our goal was to pragmatically describe patient reported outcomes (PROs) in a typical clinic population of vulvar cancer patients, as prior studies of vulvar cancer PROs have examined clinical trial participants. METHODS: A prospective PRO program was implemented in the Gynecologic Oncology clinic of a tertiary academic institution in January 2018. Vulvar cancer patients through September 2019 were administered the European Organization for the Research and Treatment of Cancer Quality of life Questionnaire, the Patient Reported Outcome Measurement Information System Instrumental and Emotional Support Scales, and the Functional Assessment of Cancer Therapy-Vulvar questionnaire. Binary logistic regressions were performed to determine adjusted odds ratios for adverse responses to individual questions by insurance, stage, age, time since diagnosis, recurrence, radiation, and surgical radicality. RESULTS: Seventy vulvar cancer patients responded to PROs (85.4% response rate). Seventy-one percent were > 1 year since diagnosis, 61.4% had stage I disease, and 28.6% recurred. Publicly insured women had less support and worse quality of life (QOL, aOR 4.15, 95% CI 1.00-17.32, p = 0.05). Women who recurred noted more interference with social activities (aOR 4.45, 95% CI 1.28-15.41, p = 0.019) and poorer QOL (aOR 5.22 95% CI 1.51-18.10, p = 0.009). There were no major differences by surgical radicality. Those >1 year since diagnosis experienced less worry (aOR 0.17, 95% CI 0.04-0.63, p = 0.008). CONCLUSIONS: Surgical radicality does not affect symptoms or QOL in vulvar cancer patients, whereas insurance, recurrence, and time since diagnosis do. This data can improve counseling and awareness of patient characteristics that would benefit from social services referral.

Association Between Vulvar Squamous Intraepithelial Lesions and Psychiatric Illness.

OBJECTIVES: The aims of the study were to describe and to compare demographics and the prevalence of psychiatric disorders among patients with low- and high-grade vulvar squamous intraepithelial lesions. METHODS: A retrospective chart review was performed for patients presenting to a vulvar diseases clinic between 1996 and 2019 (N = 2,462). Intake questionnaire data were entered into a deidentified database. Results were compared between 80 patients with biopsy-confirmed high-grade squamous intraepithelial lesions (HSILs) and 48 patients with biopsy-confirmed low-grade squamous intraepithelial lesions (LSILs). Bivariate analysis was performed to compare demographics and psychiatric treatment and outcomes across HSIL and LSIL groups. RESULTS: Among 128 patients with vulvar disease, 80 (62.5%) had HSILs and 48 (37.5%) had LSILs. Patients with HSILs were significantly older (HSIL median [interquartile range] = 49.0 (39.0-61.0) vs LSIL = 36.0 [29.0-53.0], p = .006). There were no significant differences between groups across race/ethnicity, education, marital status, or self-reported household income categories. Forty percent of HSIL patients reported depression compared with 20.8% of LSIL patients (p = .03), whereas 31.3% of HSIL patients and 8.3% of LSIL patients reported anxiety (p = .002). Bipolar disorder was reported in 3.8% of HSIL patients and no LSIL patients (p = .29). There were no differences in the proportion of patients receiving psychiatric counseling, medications, or hospitalizations between groups. CONCLUSIONS: Squamous intraepithelial lesions of the vulva are associated with psychiatric disorders above age-matched national averages; these disorders are more prominent in the HSIL group. Combining mental health services with ongoing disease treatment seem to be part of a comprehensive approach to caring for this patient population.

The effect of written information and counselling by an advanced practice nurse on resilience in women with vulvar neoplasia six months after surgical treatment and the influence of social support, recurrence, and age: a secondary analysis of a multicenter randomized controlled trial, WOMAN-PRO II.

BACKGROUND: Women with vulvar neoplasia often complain about physical and psychological distress after surgical treatment. Lack of information and support can influence resilience. Whether an information-related intervention through an advanced practice nurse supports resilience and which other factors affect resilience in women with vulvar neoplasia has never been investigated. METHODS: The aims of this study were (a) to analyse whether counselling based on the WOMAN-PRO II program causes a significant improvement in the resilience scores of women with vulvar neoplasia compared to written information and (b) to identify the potential predictors of resilience. A randomized controlled trial was conducted in women with vulvar neoplasia (n = 49) 6 months after surgical treatment in four Swiss hospitals and one Austrian hospital. Analyses of resilience and its predictors were performed using a linear mixed model. RESULTS: Thirty-six women (intervention I, n = 8; intervention II, n = 28) completed the randomized controlled trial. In total, 13 women (26.5%) dropped out of the trial. The resilience score did not differ significantly between the two interventions three and six months after randomisation (p = 0.759). Age (b = .04, p = 0.001), social support (b = .28, p = 0.009), counselling time (b = .03, p = 0.018) and local recurrence (b = -.56, p = 0.009) were identified as significant predictors of resilience in the linear mixed model analyses. CONCLUSION: The results indicate that the WOMAN-PRO II program as single intervention does not cause a significant change in the resilience scores of women with vulvar neoplasia 6 months after surgery. Predictors that promote or minimise resilience have been identified and should be considered when developing resilience programs for women with vulvar neoplasia. A repetition of the study with a larger sample size is recommended. TRIAL REGISTRATION: The WOMAN-PRO II program was registered in ClinicalTrials.gov NCT01986725 on 18 November 2013.

[Understanding lower gynaecological cancer consultation delay and help-seeking behavior in patients over 65]. / Compréhension du délai de consultation pour les cancers gynécologiques bas chez les patientes âgées de plus de 65 ans.

INTRODUCTION: Delays for consultation of more than six months exist for uterine cancer. Delays in diagnosis of more than five years exist for vulvar cancer. The peak incidence of these neoplasms appear after the age of 65 years. Patient's symptoms are characteristically swelling, vaginal bleeding or itching. This study aims to understand what is happening during this period for women over 65 years old. It also tries to identify triggers during the help-seeking period. METHODS: Qualitative studies using semi-structured interviews with dual analyses (semio-pragmatic and psychodynamic) have been conducted on a population of older (65+) gynaecologic cancer patients, recruited from a French oncology centre. RESULTS: Twelve patients were interviewed. Patients' courses of action were determined by the characteristics of their symptoms, their feelings and their emotions. Representations, subjective beliefs and past experiences were employed to make sense of their symptoms. The patient's friend and family circle had an important role in incentivizing the patient to seek consultation. Multiple factors affected the path towards consulting the doctor. The initial medical contact included several challenges. The patient would consult a doctor earlier if he had more information about his illness and if his relationship with the doctor was better. CONCLUSION: Our findings are similar to those of other cancers. The peculiarity for this population appears to be the different representations of age-related changes in the reproductive system, and the taboo associated with this issue when facing friends and family.

Effects of Written Information and Counseling on Illness-Related Uncertainty in Women With Vulvar Neoplasia.

OBJECTIVES: To determine whether written information and/or counseling decreases illness-related uncertainty in women with vulvar neoplasia. SAMPLE & SETTING: 49 women with vulvar neoplasia from four Swiss hospitals and one Austrian hospital. METHODS & VARIABLES: A longitudinal, multicenter, randomized phase 2 study was performed. The written information group received a set of leaflets. The counseling group received five consultations with an advanced practice nurse (APN) from diagnosis to six months postsurgery that focused on symptom self-management, healthcare services, and decision making. Uncertainty was measured as a secondary outcome five times by the Mishel Uncertainty in Illness Scale. RESULTS: Total uncertainty and the subscales of ambiguity, inconsistency, and unpredictability improved significantly over time within the counseling group but not within the written information group. In addition, counseling improved inconsistency over time, and total uncertainty, inconsistency, and unpredictability at distinct time points more efficiently than written information. IMPLICATIONS FOR NURSING: Counseling can reduce illness-related uncertainty. APNs are valuable healthcare providers who promote women's self-management and may support them in becoming more familiar with illness-related events and common symptoms during this rare disease.

Quality of Life and Sexual Functioning After Vulvar Reconstruction With the Lotus Petal Flap.

OBJECTIVE: Resection of (pre) malignant lesions in the vulvoperineal area may result in large defects that cannot be closed primarily. The lotus petal flap technique is widely used for reconstruction. The aim of this study was to evaluate both quality of life (QoL) and sexual functioning of patients who underwent the lotus petal flap procedure, because no data are available on this topic. METHODS: A cross-sectional study was performed on all eligible patients (N = 38) who underwent the lotus petal flap procedure between 2005 and 2016. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30, Female Sexual Function Index, and Body Image Scale were used to evaluate QoL and sexual functioning. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire C30 and Female Sexual Function Index scores were compared with scores of age-matched healthy women. RESULTS: Twenty-six patients (68%) responded. The mean (SD) age was 65.5 (16.3) years, and the median follow-up time was 38.5 months (range 16-141 months). Quality of life scores were lower compared with healthy women in the domains physical, role, and social functioning. Sexual activity rates were comparable with healthy women; however, sexual functioning was worse. Although patients were satisfied about their sexual life, pain was reported. CONCLUSIONS: Patients who underwent vulvar reconstructive surgery with lotus petal flaps seem to have a lower QoL compared with healthy women. Patients report more pain during sexual activity but are satisfied about their sexual functioning. These results should be included in preoperative counseling and follow-up of future patients eligible for vulvar reconstruction with a lotus petal flap.

["Alone with the taboo" - The social support experienced by women with vulvar neoplasia: a qualitative study]. / "Allein mit dem Tabu" ­ Wie Frauen mit vulvären Neoplasien die Unterstützung durch ihr soziales Umfeld beschreiben ­ Eine qualitative Studie.

"Alone with the taboo" - The social support experienced by women with vulvar neoplasia: a qualitative study Abstract. BACKGROUND: Cancer of the vulva is a gynaecological disease often with relevant impact for these women's daily life. On top of the medical complications, psychological problems might arise as well, due to the impaired quality of life and the withdrawal from social life. We do not know whether and what type of support is given to these patients. AIM: The qualitative study aimed at describing how the affected women experience the support they receive from their social environment from the time of the diagnosis to six months postoperatively. METHODS: A qualitative design was used. In a secondary analysis, 20 transcribed interviews from the WOMN-PRO study were analysed by qualitative content analysis according to Mayring. RESULTS: The findings from the study resulted in four main categories: having a serious disease shows how the patients experience the diagnosis as a shock and are confronted with questions of guilt and taboos. The category feel alone was strongly represented with features of not-speaking out, not looking at it and not-acting. Do it on your own features descriptions of the strategies the women use to get out of their loneliness. In experience help, it is shown that women who try to get in touch with their social environment usually receive support. CONCLUSIONS: Patients have a high demand for information concerning the disease and its possible impacts on their daily life as well as emotional and practical support from their families / partners and especially from health professionals. We recommend designating someone who acts throughout the whole treatment process as a mediator and a person of trust.

Assessing Patient-reported Quality of Life Outcomes in Vulva Cancer Patients: A Systematic Literature Review.

OBJECTIVES: Vulva cancer (VC) treatment carries a high risk of severe late effects that may have a negative impact on quality of life (QoL). Patient-reported outcome measures (PROMs) are increasingly used when evaluating disease- and treatment-specific effects. However, the adequacy of measures used to assess sequelae and QoL in VC remains unclear. The aims of the present study were to evaluate disease- and treatment-related effects as measured by PROMs in VC patients and to identify available VC-specific PROMs. METHODS/MATERIALS: A systematic literature search from 1990 to 2016 was performed. The inclusion criterion was report of disease- and treatment-related effects in VC patients using PROMs in the assessment. Methodological and reporting quality was in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. This systematic review was performed as part of phase 1 of the development of a European Organisation for Research and Treatment of Cancer QoL questionnaire for VC patients. RESULTS: The search revealed 2299 relevant hits, with 11 articles extracted including a total of 535 women with VC; no randomized controlled trials were identified. The selected studies exhibited great heterogeneity in terms of PROMs use. Twenty-one different instruments assessed QoL. Most of the questionnaires were generic. Different issues (sexuality, lymphedema, body image, urinary and bowel function, vulva-specific symptoms) were reported as potentially important, but the results were not systematically collected. Only one VC-specific questionnaire was identified but did not allow for assessment and reporting on a scale level. CONCLUSIONS: Vulva cancer treatment is associated with considerable morbidity deteriorating QoL. To date, there is no validated PROM available that provides adequate coverage of VC-related issues. The study confirms the need for a VC-specific QoL instrument with sensitive scales that allows for broad cross-cultural application for use in clinical trials.

The impact of written information and counseling (WOMAN-PRO II Program) on symptom outcomes in women with vulvar neoplasia: A multicenter randomized controlled phase II study.

OBJECTIVE: To determine whether written information and/or counseling based on the WOMAN-PRO II Program decreases symptom prevalence in women with vulvar neoplasia by a clinically relevant degree, and to explore the differences between the 2 interventions in symptom prevalence, symptom distress prevalence, and symptom experience. METHODS: A multicenter randomized controlled parallel-group phase II trial with 2 interventions provided to patients after the initial diagnosis was performed in Austria and Switzerland. Women randomized to written information received a predefined set of leaflets concerning wound care and available healthcare services. Women allocated to counseling were additionally provided with 5 consultations by an Advanced Practice Nurse (APN) between the initial diagnosis and 6months post-surgery that focused on symptom management, utilization of healthcare services, and health-related decision-making. Symptom outcomes were simultaneously measured 5 times to the counseling time points. RESULTS: A total of 49 women with vulvar neoplasia participated in the study. Symptom prevalence decreased in women with counseling by a clinically relevant degree, but not in women with written information. Sporadically, significant differences between the 2 interventions could be observed in individual items, but not in the total scales or subscales of the symptom outcomes. CONCLUSIONS: The results indicate that counseling may reduce symptom prevalence in women with vulvar neoplasia by a clinically relevant extent. The observed group differences between the 2 interventions slightly favor counseling over written information. The results justify testing the benefit of counseling thoroughly in a comparative phase III trial.

The road less travelled: Australian women's experiences with vulval cancer.

Despite advances in surgical treatments and the availability of more conservative treatment options, women treated for vulval cancer still experience significant complications such as urinary incontinence, lymphoedema, pruritus, sexual and intimacy issues. These issues can profoundly impact a woman's quality of life. The subjective experience of women diagnosed and treated for vulval cancer in the literature is limited, possibly due to its comparable rarity to other gynaecological and female cancers and because it was traditionally seen mainly in the elderly female population. Nonetheless, younger women are also being diagnosed with vulval cancer. This paper reports the findings from a qualitative study about twelve women's experiences with vulval cancer from diagnosis, through treatment and recovery. Women's feelings of isolation, their unmet information and support needs, physical concerns arising from vulval cancer, particularly after surgery, and the consequences for their body image and intimate relationships with partners, were highlighted within the data. The central findings from this study emphasise the need for further research to develop appropriate interventions for women with vulval cancer. It also highlights opportunities to improve clinical practice into the supportive care of women with this isolating disease.

'Feeling someone is there for you' - experiences of women with vulvar neoplasia with care delivered by an Advanced Practice Nurse.

AIMS AND OBJECTIVES: To explore the experiences of women with vulvar neoplasia with care delivered by an Advanced Practice Nurse. BACKGROUND: Women with vulvar neoplasia suffer from a high number of symptoms and report a lack of information and support by health care professionals. Further, talking about their disease, which is still a social taboo, is difficult for them. From approaches for other patients, it can be suggested that support from an Advanced Practice Nurse can be helpful. For Advanced Practice Nurse development, implementation and evaluation, it is important to assess patients' perceptions. But so far, little is known about how patients with vulvar neoplasia experience support of an Advanced Practice Nurse. DESIGN: A qualitative interview study was chosen to gain understanding of the experience of women with vulvar neoplasia who received care delivered by an Advanced Practice Nurse. METHODS: Narrative interviews were conducted with a purposive sample of 13 women with vulvar neoplasia after they received care from an Advanced Practice Nurse for six months. Thematic analysis was used to analyse the data from the interviews. RESULTS: Four main themes could be identified: a trusting relationship; accessibility; feeling safe and secure; and feeling someone is there for you. Women felt more secure and less alone in the experience of their illness through having the possibility of contacting an Advanced Practice Nurse and getting sufficient information and psychosocial support. CONCLUSIONS: Women with vulvar neoplasia experienced care delivered by an Advanced Practice Nurse as 'feeling someone is there for you'. Due to the localisation of the disease and the associated social taboo, psychosocial support from the Advanced Practice Nurse beyond months after surgery was very important for them. RELEVANCE TO CLINICAL PRACTICE: Addressing psychosocial needs in caring for women with vulvar neoplasia must be given greater attention in clinical practice. Further, continuous nursing support delivered by an Advanced Practice Nurse beyond the acute treatment phase can be recommended.

Perceived Health-Related Quality of Life in Women With Vulvar Neoplasia: A Cross Sectional Study.

OBJECTIVE: The aim of the study was to determine health-related quality of life (HRQoL) of women with surgically treated vulvar intraepithelial neoplasia (VIN) and vulvar cancer (VC) during the first week after hospital discharge. Further objectives were to investigate differences between women with VIN and VC as well as to examine whether correlations exist between women's symptom experience and HRQoL. METHODS: This cross-sectional study was conducted in 8 hospitals in Germany and Switzerland. Women with VIN and VC rated HRQoL with the validated German Short-Form 36. Differences between HRQoL in women with VIN and VC were tested with Wilcoxon rank-sum score. The WOMen with vulvAr Neoplasia (WOMAN) - Patient reported Outcome (PRO) self-report instrument was used to measure women's symptom experience. Correlations between symptoms and HRQoL were calculated using Spearman correlation coefficient. RESULTS: Women with VIN and VC (n = 65) reported lower HRQoL in physical aspects (Physical Component Summary [PCS], 34.9) than that in mental aspects (Mental Component Summary, 40.5). Women with VC had lower HRQoL than women with VIN, as manifested by significant differences concerning the dimensions of "physical functioning" and "role-physical." "Difficulties in daily life" as a distressing symptom correlated with MCS and PCS. Wound-related symptoms correlated with PCS and psychosocial symptoms/issues with MCS. CONCLUSIONS: Analysis showed that women with vulvar neoplasia reported lower HRQoL in the physical and mental dimensions 1 week after discharge than comparable studies referring to months or years after surgery. Health-related quality of life is influenced by physical impairment because physical symptoms are prevalent 1 week after discharge. Patient education should focus on symptom management in an early postsurgical phase to enhance women's HRQoL.

Clinical outcomes of primary surgical treatment for acquired vulvar lymphangioma circumscriptum.

OBJECTIVE: To assess the clinical outcomes of surgical treatment for acquired vulvar lymphangioma circumscriptum in patients who received radical surgery and/or adjuvant radiation therapy for cervical cancer. METHODS: A retrospective chart review of eight patients was performed to assess the demographic information, chief complaints, treatment modality for cervical cancer, location, and primary treatment modality for vulvar LC, postoperative changes in symptoms, and/or signs, the development of local recurrence and the outcome of patients. RESULTS: All eight patients were previously diagnosed with cervical cancer FIGO clinical stage IA to IIA and received surgery, radiation therapy, or concurrent chemoradiation therapy. Microscopic examination revealed multiple, dilated, D2-40-positive dermal vascular channels containing eosinophilic proteinaceous material, consistent with LC. Most chief complaints showed considerable improvements on assessment at the outpatient clinic after the primary surgery. No patient showed aggravation of symptoms. Two patients developed local recurrences. One patient developed recurrence on the opposite side 13 months after local excision. We performed a second wide local excision. Another patient developed recurrence 47 months after the primary surgery. Since the lesion was very small and localized, we decided to manage it conservatively, but monitor it very closely. The remaining six patients remained free of recurrence. CONCLUSION: It is not easy for gynecologists to have an initial clinical diagnosis of LC, because there are a number of diseases that exhibit similar clinical manifestation to that of vulvar LC. Even if it is diagnosed correctly, local recurrence often occurs. Relevant symptoms associated with LC are not only distressing, but also affect patients' quality of life. Based on our data, we propose that surgical treatment could provide a more long-lasting answer compared to other treatment modalities, since it is beneficial in terms of clinical outcomes. In the future, a long-term follow-up investigation is required to assess the prognosis and to compare the efficacy and side effects of each modality.

The impact of surgery for vulval cancer upon health-related quality of life and pelvic floor outcomes during the first year of treatment: a longitudinal, mixed methods study.

OBJECTIVE: To measure the long-term impact of surgical treatment for vulval cancer upon health-related quality of life and pelvic floor outcomes during the first year of therapy. METHODS: Prospective, longitudinal, mixed-methods study. Twenty-three women aged >18 years with a new diagnosis of vulval cancer were recruited. The EORTC QLQ C30, SF-36 and an electronic pelvic floor assessment questionnaire (ePAQ-PF) were administered at baseline (pre-treatment) and 3, 6, 9 and 12 months post-treatment. Mixed effects repeated measures models (all adjusted for age and BMI) were used to investigate changes over time and differences between cancer stage. Qualitative interviews were carried out with 11 of the women and analysed using a thematic approach. RESULTS: Mean age was 59.9 years (SD = 15.3; range = 23.8-86.6 yrs). Mean BMI was 30.0 (SD = 4.5; range = 24.4-38.2). Sixteen women had early (Stage 1 to 2B), and seven women had advanced stage disease (Stage 3 to 4B). Questionnaire scores revealed that physical and social functioning, fatigue, pain and general sex life were significantly worse at 12 months than pre-treatment (p = < 0.05). Qualitative analysis revealed multiple treatment side effects which were perceived as severe and enduring. Women with advanced vulval cancer had significantly worse SF-36 mental health scores at 12 months compared to women with early stage disease (p = 0.037). CONCLUSIONS: Surgery for vulval cancer has long-term implications which can be persistent 12 months post-treatment. High rates of morbidity relating to lymphoedema and sexual function re-enforce the need for specialist clinics to support women who suffer these complications. © 2015 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.

Sexual activity and function after surgical treatment in patients with (pre)invasive vulvar lesions.

PURPOSE: Sexual activity (SA) and sexual function (SF) are central outcome measures in women affected by preinvasive (vulvar intraepithelial neoplasia, VIN) and invasive (vulvar cancer, VC) vulvar lesions. Data on sexuality after treatment are scarce. METHODS: Validated questionnaires including the female sexual function index (FSFI-d) were provided to 166 women with a history of VIN and VC who attended the colposcopy units of the University Medical Center Hamburg-Eppendorf and Asklepios Medical Clinic Altona for follow-up between March 2011 and June 2012. Additional patients (n = 14) assessed the questionnaires online through the website of the German Vulvar Cancer Support Group (VulvaKarzinom SHG e.V.) during the same time period. RESULTS: Twenty-four patients with VIN and 34 with VC were evaluable. Median age was 51.5 years, with 34 (58.6%) of the patients being postmenopausal. Median time since completion of treatment was 17 months. All women had undergone vulvar surgery (laser/cold knife/combination). Overall, 14 (24.1%) women reported no SA during the last 4 weeks. SF was clearly impaired compared with previously described normal cohorts. SA and SF of active patients did not differ significantly between those with VIN and VC. Analyses contrasting surgical treatment methods yielded no significant associations; likewise, time since diagnosis did not affect SA and SF significantly. Increasing age was negatively associated with most dimensions of the FSFI-d [desire (p = 0.011), arousal (p = 0.004), lubrication (p = 0.003), orgasm (p = 0.013), satisfaction (p = 0.345), pain (p < 0.001)]. CONCLUSION: Women with VIN and VC after surgical treatment are at high risk to suffer from persistent sexual dysfunction especially at higher age.

Quality of life and sexual function after surgery in early stage vulvar cancer.

OBJECTIVES AND METHODS: Vulvar carcinomas are rare genital malignancies. In a retrospective study on 21 patients factors influencing the quality of life and sexual function were investigated. All patients were interviewed according to the Female Sexual Function Index questionnaire (FSFI) and the Short Form 12(®) questionnaire (SF12). RESULTS: We identified 21 patients that had been operated for vulvar carcinoma FIGO stage I or IIIa in the years 2006-2008. Patients that had adjuvant radiotherapy were excluded. 14 patients had been treated by a wide excision, the other 7 by a vulvectomy. 10 patients had undergone a total inguinal lymphadenectomy, 5 patients a sentinel node biopsy. In a multivariate analysis lymphadenectomy was the only factor influencing the patients' sexual function: Patients without lymphadenectomy or with sentinel node biopsy scored better in terms of sexual function, neither age nor the extend of the surgery resulted in a significant difference. CONCLUSION: The lymphadenectomy has a negative influence on the patients' sexual function after surgical treatment for vulvar carcinoma. The indication for lymphadenectomy should hence be seen critically.

Impact of radical operative treatment on the quality of life in women with vulvar cancer--a retrospective study.

OBJECTIVES: For patients undergoing vulva surgery the quality of life (QoL) is generally accepted as an important outcome parameter in addition to long-term survival, mortality and complication rates. Less radical operative treatment can reduce morbidity and thereby improve quality of life. This study focuses on outcome in terms of QoL in patients comparing wide local excision (WLE) with radical vulvectomy and waiver of lymphonodectomy (LNE) with inguinofemoral lymphonodectomy. METHODS: In a retrospective single-center study from 2000 to 2010, 199 patients underwent surgery for vulvar cancer. To assess QoL, the EORTC QLQ-C30 and a tumor-specific module questionnaire were sent to all patients in the follow-up period. RESULTS: Women who underwent WLE have a superior QoL with regard to global health status and physical, role, emotional and cognitive functioning than those who underwent radical vulvectomy. Less radical surgery also implies less fatigue, nausea/vomiting, pain, insomnia, appetite loss, diarrhea and financial difficulties. After radical vulvectomy 89% of patients have sexual complications. CONCLUSION: Radical operative treatment, such as radical vulvectomy, causes deterioration in the QoL of these patients. An individualized, less radical surgery must be the aim in the treatment of vulvar cancer.

Quality of life after complete lymphadenectomy for vulvar cancer: do women prefer sentinel lymph node biopsy?

OBJECTIVES: Leg lymphoedema occurs in up to 60% of women after a complete inguinal-femoral lymphadenectomy for vulvar cancer. To avoid lymphoedema, sentinel lymph node biopsy has become the preferred method of staging. However, false-negative results may influence survival, making the sentinel node procedure unacceptable to many fully informed women. The aims of this study were to measure the quality of life (QoL) in women after a complete lymphadenectomy for vulvar cancer and to quantify the risk to survival these women would be prepared to take with sentinel node biopsy. MATERIALS AND METHODS: Sixty women who had a complete lymphadenectomy for early-stage vulvar cancer participated in structured interviews. The severity of lymphoedema symptoms was recorded. The QoL-adjusted survival was measured using the Utility-Based Questionnaire-Cancer, a cancer-specific validated QoL instrument. The women stated their preference for sentinel node biopsy or complete lymphadenectomy. A "standard-gamble" preference table was used to quantify the degree of risk to survival they would take to avoid lymphoedema. RESULTS: Seventy-three percent of women reported lymphoedema after complete lymphadenectomy. Women with lymphoedema or leg pain had significantly worse scores for QoL in terms of social activity as well as physical and sexual function. Overall, 80% of women would choose complete lymphadenectomy rather than sentinel node biopsy if the risk of missing a positive lymph node was higher than 1 in 100, but if the risk of missing a positive lymph node was lower than 1 in 100, almost one third of the women would prefer sentinel node biopsy. CONCLUSIONS: Although women treated for early-stage vulvar cancer report reduced QoL after complete lymphadenectomy, most would choose complete lymphadenectomy over sentinel node biopsy. However, there is an individual level of risk that each woman can define with regard to her preference for the sentinel node procedure. Women with early-stage vulvar cancer should be offered an informed choice between complete lymphadenectomy or sentinel node biopsy.