Written by Sarah Belton, Advanced Nurse Practitioner in Gynaecology Oncology at The National Maternity Hospital
The Advanced Nurse Practitioner led Gynaecology Oncology Family History Clinic is a new, innovative approach to the care of women with BRCA 1 and BRCA 2 germline alterations to manage their ovarian cancer risk reduction strategy. The new service established at The National Maternity Hospital and St Vincent’s University Hospital prioritises prevention of ovarian cancers in these patients, through risk reduction surgery. However, this is a complex issue for pre-menopausal women as it affects fertility and, surgery results in menopause.
Recent Irish research has established that information needs are important to women with BRCA (NCCP, 2023; Warner and Groake, 2022). In its Hereditary Cancer Model of Care document (2023), the National Cancer Control Programme describe the provision of accurate, consistent information as a key theme from research carried out with this patient group. Warner and Groake (2022) found that patients were disempowered by dealing with high levels of uncertainty in their care following BRCA diagnosis, as a result of inconsistent information given by different health care professionals. The NCCP (2023) also states those with a genetic predisposition to ovarian cancer should have access to clear information regarding the symptoms of surgical menopause and longer term health risks associated with this prior to surgery and, that patients should have access to expert, individualised advice regarding their options for menopause management (NCCP 2023). A recurrent theme from national and international literature is that women do not regret undertaking risk reducing salpingo-opherectomy but repeatedly highlight a lack of information sources particularly around the long term impact of prophylactic surgery in a variety of areas including fertility, menopause (and the use of
“As part of the Irish Cancer Society funded Women’s Health Initiative, thisisGO. ie was developed to provide a safe, online, personalised resource that provides current, reputable, relevant and evidence based information for Irish women with gynaecological cancer”
hormone replacement therapy) bone health, cardiovascular risk and cognitive protection.
The NCCP (2023) Hereditary Cancer Model of Care document describes the role of CNSs and ANPs as key to the provision of cancer predisposition services.
The ANP led Gynae Oncology Family History Clinic, the first of its kind nationally, was established in 2022 and is run on a virtual basis, reducing the need for patients to attend the hospital. From 1st Sept 2022 to 1st June 2023, 95 virtual consultations were offered by the Gynae Oncology ANP. These
consultations bring specialist services to the patient in their own environment, a key aim of Slaintecare. Previously, these patients were seen in the Gynaecology clinic routinely. The new service has increased capacity within the Gynaecology service, at a time when there is significant demand. Patients with a genetic mutation predisposing them to cancer have a high burden of scans and clinic appointments to attend across multiple specialties. In the current cost of living crisis, each of these visits cost the patients’ time and money for fuel, car parking, time off work, potential childcare costs, etc.
As part of the Irish Cancer Society funded Women’s Health Initiative, thisisGO.ie was developed to provide a safe, online, personalised resource that provides current, reputable, relevant and evidence based information for Irish women with gynaecological cancer. Developed with patients, by patients and for patients the site is built on the principle that patient involvement and engagement must be embedded in every stage of the development process from conception to design to implementation. It includes a section dedicated to patients with BRCA mutations. Patients are recommended to consider risk reducing surgery from the age of 40 for BRCA1 mutation, and from the age of 45 for those with a BRCA2 mutation. This demographic is familiar with accessing content and information on mobile internet devices and using the established platform thisisGO.ie. Future development plans for the service include tailoring information on thisisGO.ie to cover patients’ individual status for hormone replacement therapy, as per the National Women’s Health Action Plan 2022 – 2023, as an example.
The National Cancer Strategy (DoH, 2016) recognised that cancer genetics in Ireland was under-developed and underfunded. However, recent support from the HSE Nursing and Midwifery Practice Development Unit to develop an ANP role, support of stakeholders across The National Maternity Hospital and St Vincent’s University Hospital, establishing a designated nurse led clinic, plus the development of thisisGO. ie patient resource have all contributed to an improved specialist service for patients. Involving service users to develop consistent, evidence based, relevant patient information would further improve the landscape for patients with BRCA mutations nationally, as thisisGO.ie is not restricted to a specific institution or health care setting.
The ANP led Gynae Oncology Family History Clinic has been awarded the Susanna Byrne Perpetual Award by the HSE Nursing and Midwifery Practice Development Unit in Dublin South, Kildare and Wicklow, for demonstrating commitment and excellence in improving the care delivered to patients/clients and their families.
