Hypothesis / aims of study
There is emerging evidence that rates of pelvic floor dysfunction (PFD), including urinary incontinence, faecal incontinence and dyspareunia may be higher after gynaecological cancer treatment than in the general population. However, routine screening and referral are included in current gynaecological cancer care pathways only for sexual dysfunction, not urinary or faecal incontinence. Gynaecological cancer survivors may not self-disclose nor seek treatment for these symptoms, even if they find them bothersome .
Exploring the perceptions and experiences of patients and clinicians is essential to understand how to provide gynaecological cancer survivors with the most appropriate information and treatment options for PFD. There are currently no data on the barriers and enablers to accessing and undertaking pelvic floor (PF) therapies from the patient’s perspective.
Understanding the perspectives of clinicians is also crucial to identify and overcome barriers to screening and managing PFD in the gynaecological cancer clinical setting. Previous literature in non-cancer populations has demonstrated a contrast between the perspectives of patients and clinicians regarding barriers and enablers to pelvic floor (PF) therapies . If such a difference occurs between patients and clinicians in the gynaecology-oncology setting, this could result in a mismatch between patient preferences and clinician practices.
Therefore, our purpose was to explore and compare patient and clinician experiences, understanding and preferences in relation to the screening, management and referral for treatment for PFD, as well as exploring barriers and enablers to PF therapies, for women attending gynaecology-oncology care in a specialist cancer and tertiary hospital setting in Australia.
Study design, materials and methods
This was an exploratory qualitative study. Individual semi-structured interviews were conducted with purposive samples of patients experiencing a range of symptoms of PFD after surgery, radiotherapy or chemotherapy for gynaecological cancer, and clinicians (medical-oncology, radiation-oncology, gynaecology-oncology surgery and surgical nursing and radiotherapy nursing disciplines). Interviews were audiotaped and transcribed. Codes were developed by one researcher and cross-checked by two researchers, with disagreements discussed until consensus was reached. Codes were collapsed into themes by the primary researcher, and these were refined and further developed in group discussion with all researchers. Interviews were then reviewed by the primary researcher to identify supporting quotes for emergent themes, ensure fidelity to the interview data and confirm data saturation. The COnsolidated criteria for REporting Qualitative research (COREQ) were used to guide presentation of results .
We interviewed 12 patients and 13 clinicians. The demographic and clinical characteristics/experiences of patients and clinicians are shown in Tables 1 and 2 respectively.
Three main interrelated themes emerged from the interviews with patients and clinicians: (1) experience with symptoms, screening, disclosure and management of PFD; (2) what patients and clinicians think should happen for screening and management of symptoms of PFD; and (3) barriers and enablers to screening and management of symptoms of PFD.
Patients and clinicians identified a variety of patient experiences of bladder, bowel and sexual dysfunction. Clinicians reported using clinical and demographic indicators, such as planned cancer treatment and patient age to guide whether they discussed potential symptoms of PFD with individual patients prior to treatment. Clinicians identified a range of existing PF therapy options including vaginal dilator therapy and PF muscle training, and identified types of specialised clinicians who could provide further treatment. In contrast, patients more often described self-management and coping strategies that they had developed independently, such as staying near toilets, using pads, reducing water intake to reduce urinary incontinence, and increasing fibre and fluid intake to reduce constipation.
Both patients and clinicians acknowledged that cancer treatment was their priority, ‘Because their obvious problem is their cancer and getting over that and making sure that it doesn’t come back’ (Clinician-participant), however they also identified missed opportunities for screening for PFD throughout the gynaecological cancer journey, which could potentially prevent or delay symptoms of PFD from being identified or treated. Patients felt that information should be provided to all women diagnosed with gynaecological cancer, ‘I think knowledge is power. I think if you’ve got it, then you have a good way of addressing it, if it does happen anyway’ (Patient-participant). All clinicians and most patients felt the best PF management approach would be multidisciplinary. The majority of patients and clinicians expressed a positive attitude towards PF therapy and felt this should be offered to gynaecological cancer patients.
Patients identified barriers to PF therapies that included discontinuity in clinical care, time pressure on clinicians, difficulties with transport, travel time, parking and costs, and the burden and side-effects of cancer treatment. Clinicians identified barriers that included time pressure, a lack of specialised knowledge, and limited access to specialised clinicians for onwards referral, the burdens and side-effects of cancer treatment and also the emotional distress that many patients experience. Integrated multidisciplinary services that provide specific PF continence nursing or physiotherapy care were identified as a potential solution to overcome many of these barriers.
Interpretation of results
This is the first study to explore the perspectives of both patients and clinicians regarding screening and providing information for PFD in the gynaecological cancer clinical setting. Our findings indicate that it may be beneficial to provide gynaecology-oncology patients with information about symptoms and management of PFD, and to identify opportunities for screening for PFD throughout the cancer journey, with patients preferring to receive this information prior to cancer treatment. Routine screening at the steps of diagnosis, staging and treatment planning and during care after initial recovery, could enable timely and relevant provision of information to patients and referral of patients to specialist clinicians.
This is also the first study to identify the perceived barriers and enablers to PF therapies in the gynaecological cancer setting from both the patient and clinician perspectives. Many barriers that were identified by both groups (patients and clinicians) related to the challenges of attending appointments and funding appointment-related costs for patients who may be busy, unwell, or facing financial difficulty. Barriers related to health service systems were also identified: discontinuity of care was identified by patients and reflects hospital staffing systems, while limited access to specialised clinicians was identified by clinicians and reflects fragmentation of health care provision between different clinical areas.
Strategies to reduce the logistical and financial burden of appointments on patients, such as coordination of appointments with ongoing oncology follow-up, or consideration of distance-care options such as telehealth, should be explored. There is also a need to ensure that referral pathways to specialised services for PFD are easily accessible for clinicians and patients in order to support timely referral and management of PFD during or after treatment for gynaecological cancer. Finally, investigation into the feasibility of integrating physiotherapy or specialised nursing management for bladder and bowel symptoms into gynaecology cancer care-pathways is warranted.