Hypothesis / aims of study
Vaginal pain during intercourse and urinary incontinence are common urogenital dysfunctions in women who have been treated for gynecologic cancer. With survival rates on the rise, there is a growing population of women impacted by these dysfunctions, which are known to affect their daily activities, sexual function and overall quality of life. Pelvic health physiotherapy interventions aim at reducing dysfunction in survivors of gynecologic cancers through education on the use of vaginal moisturizers, dilation therapy program and pelvic floor muscle exercises. Recent evidence suggest that pelvic health physiotherapy interventions can reduce dyspareunia and urinary incontinence in women who have been treated for gynecologic cancer.[1, 2] Given that time, travel and costs are obstacles to accessing pelvic health physiotherapy services, virtual pelvic health interventions presents a potential solution to mitigate accessibility issues. However, survivors’ needs, barriers and facilitators towards virtual pelvic health interventions delivery remain unknown. Understanding the needs of survivors can inform the planning and delivery of virtual pelvic health education and exercise programming. With this mixed-method study, we aim to identify the needs, barriers, and facilitators of gynecologic cancer survivors towards virtual pelvic health physiotherapy interventions.
Study design, materials and methods
Phase 1 of this patient-oriented mixed-methods study involves a cross-sectional online survey among adult who received at least one oncology treatment for a gynecologic cancer and who were able to read English. This study was approved by the local Health Research Ethics Board. The survey was designed to follow the Strategy for Patient-Oriented Research; patient-partners were recruited to be consulted and actively involved in decision-making throughout the various research activities of this study. The survey includes 50 multiple choice or open-ended questions spanning topics including health status, pelvic health knowledge, environmental factors and motivational factors. Formulation of questions were guided by evidence, clinical experience and input from patient-partners. The questions were informed by the Theoretical Domains Framework, a framework which stems from organizational behavior change theories and implementation science principles, and mapped to their related component of the Capability, Opportunity, Motivation - Behavior Change (COM-B) Model. Participation was anonymous; invitations to participate in the survey were shared on social media platforms, patient support groups, lists of previous research participants, and through posters in medical offices. The survey is hosted on a secure, encrypted online platform (REDCap). Analysis: Responses to the survey provide quantitative data from categorical and ordinal scales, from which we derived descriptive statistics (frequency and percentages, mean and standard deviations) to summarize responses. An interpretive description thematic analysis method guided the qualitative analysis of the narrative content, where answers were first scanned and iterated for identification of possible themes, coded and further sorted into subcategories.
Phase 1 reports on the preliminary results from the English-respondents (n=24) of this study. All 24 (100%) respondents identified their gender as woman; 15 (62.5%) were aged ≥55 years old; 18 (75.0%) were in a relationship; and 18 (75.0%) reported 2 or more previous pregnancies. They also reported having been treated for various types of gynecologic cancer: 12 respondents were diagnosed with uterine cancer (50.0%), 3 for cervical cancer (12.5%) and 9 for ovarian cancer (37.5%). Twenty-one respondents were treated with surgery (87.5%), 7 with radiation therapy (29.2%), 18 with chemotherapy (75.0%) and 6 with hormonal therapy (25.0%).
Only 5 (20.8%) of respondents felt confident in their ability to perform pelvic floor muscle properly, and 6 (25.0%) felt confident in their ability to perform dilation therapy adequately and safely. Knowledge on dilation therapy was low, with a mean score of 26.3(SD: 35.03) on a scale from 0 (Not at all) to 100 (Very Much). Fourteen (58.3%) respondents reported not discussing pelvic health with their healthcare provider at any point during cancer treatment, and only 2 (8.3%) sought out pelvic health information elsewhere on their own. A total of 9 (37.5%) respondents reported having refrained themselves from discussing pelvic health topics with their healthcare provider because of feeling embarrassed (n=4), because of thoughts that pelvic health issues were not as important as being cancer free (n=5), because of being unsure of who to discuss these topics with (n=3), or because of lack of time and opportunity to bring the topic up (n=5). Nineteen respondents believed it was difficult (n=7; 29.2%) or somewhat difficult (n=12; 50.0%) to access information on pelvic health interventions. They identified several barriers that hindered access to information on pelvic health interventions, as illustrated in Figure 1. The most identified barrier was “I don’t know what exactly to look for” when accessing information (n=13; 54.2%). Other reasons mentioned were the lack of resources in rural areas and the lack of opportunity during clinical telephone follow-ups in comparison to face-to-face visits.
All 24 (100%) respondents indicated that they believed that providing pelvic health physiotherapy interventions through an online format ‘would’ (n=15; 62.5%) or ‘maybe would’ (n=9; 37.5%) be helpful to an individual treated for gynecologic cancer. Qualitative analysis of narrative content revealed that respondents identified several facilitators to pelvic health interventions by the online format: 1) reducing the need to travel; 2) increasing access to services that are currently unavailable in rural and remote areas; 3) decreasing costs associated with in-person services (cost of private physiotherapy services, parking fees at the hospital, etc.); 4) reducing embarrassment (“removes some of the need for courage to bring it up”); and 5) facilitating access to care for those who are immune-compromised or too-sick to seek in-person care.
Interpretation of results
Preliminary results from this study highlighted that the English-speaking respondents reported little knowledge related to pelvic health interventions, recognized several barriers to accessing pelvic health care, including their lack of knowledge on what pelvic health is, and identified several facilitators from virtual delivery of pelvic health physiotherapy interventions. Reducing costs and travel were key facilitators identified by the respondents, as well as decreasing the time and travel burden for gynecologic cancer patients continuing active treatment.