Exploring the experiences and priorities of women with a diagnosis of ovarian cancer.

PURPOSE: Ovarian cancer is the third most common gynaecological cancer among women, yet remains under-researched. Past studies suggest that women who present with ovarian cancer have more supportive care needs compared to women experiencing other gynaecological cancers. This study explores the experiences and priorities of women with a diagnosis of ovarian cancer and whether age may influence these needs and experiences. METHODS: Participants were recruited by a community organization, Ovarian Cancer Australia (OCA), via a social media campaign promoted on Facebook. Participants were asked to rank priorities around living with ovarian cancer, and to endorse which supports and resources they had used to address those priorities. Distributions of priority rankings and resource use were compared by age (19-49 vs. 50+ years). RESULTS: Two hundred and eighty-eight people completed the consumer survey and most respondents were 60-69 years (33.7%). Priorities did not vary by age. Fear of cancer recurrence was identified by 51% respondents as the most challenging aspect of having ovarian cancer. Compared with older respondents, a higher proportion of young participants were more inclined to use a mobile app version of the OCA resilience kit (25.8% vs 45.1%, p=0.002) and expressed interest in using a fertility preservation decision aid (2.4% vs 25%, p<0.001). CONCLUSION: Fear of recurrence was participants' primary concern, presenting an opportunity to develop interventions. Information delivery needs to consider age-specific preferences to better reach the target audience. Fertility is more important to younger women and a fertility preservation decision aid may address this need.

Getting the MOST out of follow-up: a randomized controlled trial comparing 3 monthly nurse led follow-up via telehealth, including monitoring CA125 and patient reported outcomes using the MOST (Measure of Ovarian Symptoms and Treatment concerns) with routine clinic based or telehealth follow-up, after completion of first line chemotherapy in patients with epithelial ovarian cancer.

BACKGROUND: Physical symptoms, anxiety, depression, fear of recurrence, sexual dysfunction, and social withdrawal are common in women after treatment for ovarian cancer. Most patients would like and need help dealing with these symptoms. The traditional model of follow-up care is unstructured and largely focused on diagnosing recurrent disease, and most oncologists lack skills to identify and manage psychosocial issues. No high quality prospective clinical trials have been conducted to determine the optimal follow-up regimen or the cost effectiveness of ovarian cancer surveillance strategies. PRIMARY OBJECTIVES: To assess emotional wellbeing, acceptability, safety, and cost effectiveness of nurse led follow-up via telehealth for women with ovarian cancer following completion of primary treatment. STUDY HYPOTHESIS: We hypothesize that compared with routine clinic based follow-up, nurse led follow-up via telehealth, including serum CA125 monitoring and completion of a patient reported outcome instrument, the Measure of Ovarian Symptoms and Treatment concerns-Surveillance (MOST-S26), will improve emotional wellbeing in women with ovarian cancer; be feasible, safe, acceptable, and not delay the time to diagnosis of recurrent disease; will result in greater patient satisfaction; will identify more patients with psychological distress, lead to better care, and improved psychological outcomes; and be cost-effective. TRIAL DESIGN: Phase II multicenter randomized trial comparing 3 monthly nurse led telehealth consultations that include serum CA125 monitoring and completion of the MOST-S26, with routine clinic based follow-up. The allocation ratio will be 1:1. MAJOR INCLUSION/EXCLUSION CRITERIA: Eligible patients will be women with high grade epithelial ovarian cancer who have normalized serum CA125 (to <35 kU/L) at completion of first line chemotherapy. PRIMARY ENDPOINTS: Emotional wellbeing at 12 months. SAMPLE SIZE: 150 patients. ESTIMATED DATES FOR COMPLETING ACCRUAL AND PRESENTING RESULTS: July 2023. Results expected in 2025, 24 months after the last participant is enrolled. TRIAL REGISTRATION: ACTRN12620000332921.

Fear, worry and sadness: an exploratory study of psychological wellbeing in men caring for their partner with ovarian cancer.

PURPOSE: Ovarian cancer is the leading cause of death from female cancers in Australia with the majority of women presenting with advanced disease. The burden of caregiving is largely borne by male carers; however, little research has examined the challenges male ovarian cancer caregivers (MOCC) experience. This study aimed to explore the psychosocial wellbeing and cancer-related challenges experienced by MOCC. METHODS: A cross-sectional small-scale exploratory online survey study recruited 36 MOCC. The study questionnaire was comprised of the Generalised Anxiety Disorder Scale (GAD-7), Patient Health Questionnaire Depression Module (PHQ-9), Functional Assessment of Cancer Therapy Scale (FACT-G) Family Member, Fear of Cancer Recurrence Scale, Insomnia Severity Index (ISI), Functional Assessment of Chronic Illness Therapy Fatigue Scale (FACTIT-F) and Cancer-Related Challenges Scale (CRCS). RESULTS: The most common challenges ever experienced were worry about the future (91%), fear of metastasis (90%) and feeling worried or uncertain (88%). The most common current challenges were fear of cancer recurrence (75%), fear of metastasis (68%) and changes in sexual relationships (64%). Depression and anxiety were significantly correlated with all psychosocial variables highlighting the relationships between elements of wellbeing for MOCC. Clinical levels of fear of cancer recurrence were reported by 89% of MOCC. CONCLUSIONS: The challenges faced by MOCC are psychosocial in nature. There is a high correlation between anxiety and depression, and this coupled with the fear of disease recurrence indicates a greater need for screening of these issues, appropriate referral and development of support resources for this high-risk group of cancer carers.

Developing an Australian multi-module clinical quality registry for gynaecological cancers: a protocol paper.

INTRODUCTION: Gynaecological cancers collectively account for almost 10% of cancer diagnoses made in Australian women. The extent of variation in gynaecological cancer survival rates and treatment outcomes across Australia is not well documented. The purpose of the clinical quality registry described in this paper is to systematically monitor and improve quality of care provided to these women, and facilitate clinical process improvements to ensure better patient outcomes and greater adherence to best practice care. The registry infrastructure has been developed in conjunction alongside the inaugural ovarian, tubal and peritoneal (OTP) module, allowing for concurrent piloting of the methodology and one module. Additional tumour modules will be developed in time to cover the other gynaecological tumour types. METHOD AND ANALYSIS: The National Gynae-Oncology Registry (NGOR) aims to capture clinical data on all newly diagnosed cancers of the uterus, ovary, fallopian tubes, peritoneum, cervix, vulva and vagina in Australia with a view to using these data to support improved clinical care and increased adherence to 'best practice'. Data are sourced from existing clinical databases maintained by clinicians and/or hospital gynaecological cancer units. A pilot phase incorporating only OTP cancers has recently been conducted to assess the feasibility of the registry methodology and assess the support of a quality initiative of this nature among clinicians and other key stakeholders. ETHICS AND DISSEMINATION: The NGOR has received National Mutual Acceptance (NMA) ethics approval from Monash Health Human Research Ethics Committee (HREC), NMA HREC Reference Number: HREC/17/MonH/198. We also have approval from Mercy Health HREC and University of Tasmania HREC. Data will be routinely reported back to participating sites illustrating their performance against measures of agreed best practice. It is through this feedback system that the registry will support changes to quality of care and improved patient outcomes.

Discussing the transition to palliative care: evaluation of a brief communication skills training program for oncology clinicians.

OBJECTIVE: Discussing the transition from active anti-cancer treatment to palliative care can be difficult for cancer patients and oncology health professionals (OHP). We developed a brief communication skills workshop to assist OHP with these conversations, and examined satisfaction with the workshop and perceived confidence regarding these discussions. METHOD: Interactive workshops were conducted by trained facilitators and included cognitive, behavioral, and experiential components. The major component of the workshop involved role-plays with trained actors (simulated patients). Participants completed an evaluation questionnaire. RESULTS: Sixty-two OHP participated in workshops. Overall, participants were highly satisfied with the workshop content and format. All participants felt the workshop provided relevant practical information, and > 80% thought that participation benefited their work. Over 98% said that the workshop had increased confidence in their communication skills. SIGNIFICANCE OF RESULTS: Participants were very satisfied with the workshop, and thought that participation increased confidence in communicating about the transition to palliative care. Dissemination of this model of communication skills training seems warranted.