Facilitating psychosexual adjustment for women undergoing pelvic radiotherapy: pilot of a novel patient psycho-educational resource.

PURPOSE: This pilot study aimed to obtain feedback on the feasibility, safety and acceptability of a psychosexual rehabilitation booklet developed for women undergoing pelvic radiation therapy (PRT) and to explore women's sexual, informational and supportive care needs post-PRT rehabilitation. METHODS: Twenty women treated with PRT for gynaecological or anorectal cancer within the last 5 years, who had received vaginal dilators, provided feedback on the format, content and utility of the booklet and discussed their post-treatment information needs, via a semi-structured phone interview. Women completed standardized (HADS, IES-R) and study-specific scales to characterize psychological status of the sample and to assess participants' booklet knowledge and feedback, respectively. RESULTS: The booklet was perceived as very helpful, informative and not distressing, providing additional information to that discussed with clinicians. After reading the booklet, women had good understanding of strategies to reduce the sexual impact of PRT. Many women reported that discussion of sexuality was often avoided during consultations, despite them experiencing distressing sexual experiences and difficulties post-PRT. CONCLUSIONS: This novel resource which addresses an important component of post-pelvic radiation care appears acceptable and highly valued. Findings have highlighted a need for sexual health communication training for clinicians who treat this population so that they can initiate conversations about vaginal health and sexual health in an informed and comfortable manner. The impact of the revised booklet on psychosexual and clinical outcomes is being evaluated in a multicentre RCT.

Chore or priority? Barriers and facilitators affecting dilator use after pelvic radiotherapy for gynaecological cancer.

PURPOSE: Pelvic radiotherapy for gynaecological cancer often leads to damage of the vaginal mucosa, resulting in stenosis (obstruction by scar tissue). Stenosis has been associated with sexual dysfunction and can hinder medical examinations to detect recurrence. The use of vaginal dilators is frequently recommended to prevent or minimise stenosis, but women are reluctant to use these devices. The aim of this study was to explore the patient experience of dilator use and identify the barriers and facilitators affecting compliance with clinician recommendations. METHODS: Women were eligible for the study if they had undergone pelvic radiotherapy for gynaecological cancer up to 2 years ago and received a vaginal dilator as part of their post-treatment rehabilitation. Fifteen participants completed a semi-structured interview. RESULTS: Barriers to dilator use included: uncertainty about how/when to use dilators, viewing it as a negative experience, lack of time or forgetting and the need for discretion due to an association with sex aids. Facilitators included: concern about stenosis, belief that dilators work, reminders of stenosis, acceptance of dilator use as part of their normal routine or an extension of medical treatment and focusing on positive aspects. These factors were incorporated into a model of dilator use based on the Health Belief Model. CONCLUSIONS: This is the first qualitative study to specifically investigate the patient experience of dilator use. The barriers and facilitators identified in this study and the proposed theory-based model provide new insights to inform future research and clinical management of dilator use.

"The booklet helped me not to panic": a pilot of a decision aid for asymptomatic women with ovarian cancer and with rising CA-125 levels.

INTRODUCTION: After first-line treatment, cancer antigen 125 (CA-125) levels can rise many months before there are other signs of recurrent ovarian cancer, leading to a difficult choice about when to initiate second-line treatment. To assist with shared decision making, a decision aid (DA) booklet that compared the options of "wait and see," chemotherapy, and tamoxifen was developed and piloted. METHODS: Twenty patients attending clinics at 2 cancer centers agreed to read the DA booklet, complete a set of standardized and purpose-designed measures, and provide feedback on the DA booklet via a semistructured telephone interview. Participants were either currently making the decision about treatment (n = 14) or had progressed and were now receiving treatment of recurrent cancer (n = 6). RESULTS: Most patients found information in the DA easy to understand (79%) and presented in a balanced way (90%), and almost all (95%) would recommend the booklet to others facing a similar decision. Women showed a good understanding of information contained in the booklet, with a mean of 88% answering each of the knowledge questions correctly. Compared with other ovarian cancer studies, decisional conflict scores were lower, whereas anxiety scores were high but similar to 1 comparable study. Suggestions for improvement related to information about recurrent ovarian cancer and the decision making worksheets. CONCLUSIONS: The DA seems an acceptable and useful decision making resource in this setting. Strategies for reducing anxiety levels linked to booklet administration are outlined. The DA has been revised to reflect pilot findings and changes in clinical evidence, and the effectiveness of the DA in reducing decisional conflict and regret is being evaluated in a randomized controlled trial.

A prospective study assessing patient satisfaction at a large tertiary gynecologic oncology/dysplasia unit.

BACKGROUND: Patient satisfaction is an important quality assurance measure in the delivery of health care. We conducted a prospective study to assess patient satisfaction at a large tertiary oncology/dysplasia unit. AIMS: To assess current patient satisfaction at a large tertiary oncology/dysplasia unit and identify potential areas for improvement. METHODS: This was a prospective study of patients attending a tertiary oncology/dysplasia unit. Patients were invited to participate and, if they agreed, were given a validated questionnaire to complete at the end of their consultation. Descriptive statistics were then used to analyze the data and identify potential areas of improvement. RESULTS: One hundred eighty-seven patients were recruited, and 96% of patients were satisfied with the overall level of care received. Significant positive features of the service included helpfulness of the staff, cleanliness of the facility, and measures implemented to respect patient privacy. Lack of patient parking, waiting times in the clinic, difficulties in contacting the service, and locating the building were identified as areas for improvement. CONCLUSION: Patients attending our facility were largely satisfied with the overall level of care received. Nonclinical factors including parking, waiting times, and access to the service were identified as areas for improvement.

Patient satisfaction with inpatient care provided by the Sydney Gynecological Oncology Group.

PURPOSE: Patient satisfaction with the provision of hospital oncology services can have a significant impact on their overall treatment experience. AIMS: To assess patient satisfaction with the inpatient hospital services in the gynecological oncology setting using the IN-PATSAT32 questionnaire developed by the European Organization for Research and Treatment of Cancer (EORTC). METHODS: A modified version of the IN-PATSAT32 questionnaire with additional 16 items was administered to 52 adult surgical inpatients admitted with the Sydney Gynecological Oncology Group. All participants were provided with an information leaflet regarding the survey and written consent obtained. RESULTS: A high response rate (100%) from patients with varied social, ethnic, and educational backgrounds confirmed the acceptability of the survey. Standard of medical care provided, frequency of doctors' visits, exchange of information with doctors, friendliness of the staff, and state of the room ranked highly (>95%) on the patient satisfaction scales. Problems were identified with ease of access to and within the hospital, quality of food, and exchange of information with other hospital staff. CONCLUSIONS: Overall the satisfaction with inpatient care was rated very highly in most areas. Deficiencies in certain elements of provision of medical care to the patients were identified and steps have been taken to improve upon these shortcomings.

Rising cancer antigen 125 level and the type and timing of treatment for recurrent ovarian cancer: a clinical dilemma, but what would women do?

OBJECTIVE: Clinical uncertainty currently exists for the timing of treatment for women with epithelial ovarian cancer who are under surveillance for their first recurrence and have rising cancer antigen 125 levels. This study ascertained women's preferences for this clinical scenario and the impact of regular surveillance on psychosocial well-being. METHODS: Women with a diagnosis of epithelial ovarian cancer who had completed primary treatment and were in surveillance for their first recurrence were eligible to participate. Treatment preferences were ascertained using the Prospective Measure of Preference, and psychological well-being was ascertained using a series of psychological scales. RESULTS: Women (n = 21) had highly variable preferences for the type and timing of second-line treatment when basing their decision on rising cancer antigen 125 levels. Around half indicated a preference against treatment and were willing to trade life expectancy (WTT) to avoid chemotherapy (WTT = 0.45) or tamoxifen (WTT = 0.50). For these women, strong preferences against treatment were reflected in high Prospective Measure of Preference utility scores (0.15 for chemotherapy and 0.19 for tamoxifen). The negative experience of chemotherapy, the uncertainty about tamoxifen's effectiveness, and remaining symptom-free influenced these decisions. The remaining women indicated they would begin chemotherapy or tamoxifen immediately. These women believed taking early steps to treatment was positive and a coping mechanism; however, some revealed unrealistic expectations of treatment. Most women reported good levels of psychological well-being and were coping with ongoing surveillance. CONCLUSIONS: Women in surveillance for recurrent ovarian cancer have highly variable preferences, and their reasons for their treatment choices are diverse. Therefore, although uncertainty exists for this clinical scenario, treatment preference should be ascertained on an individual basis.

Not all ovarian cysts in young woman are benign: a case series and review of the management of complex adnexal masses in young women.

While ovarian cancer is a disease that predominately affects postmenopausal women, up to 13% of affected patients are indeed less than 45 years of age. The diagnosis is often delayed because of the non-specific nature of symptoms and a lack of specific and accurate diagnostic tests, that is, CA125 and ultrasound. In premenopausal women these issues are compounded, further reducing the likelihood of an accurate and early diagnosis. It is important for gynaecologists to have a high index of suspicion and appropriately investigate symptomatic patients and interpret test results critically. Not all ovarian cysts in young women are benign, and a low threshold for surgical evaluation is warranted.