« Figure it out on your own »: a mixed-method study on pelvic health survivorship care after gynecologic cancer treatments

doi:10.21203/rs.3.rs-3782452/v1

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Research Article

« Figure it out on your own »: a mixed-method study on pelvic health survivorship care after gynecologic cancer treatments

https://doi.org/10.21203/rs.3.rs-3782452/v1

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published 22 Mar, 2024

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Purpose. Pelvic health issues after treatment for gynecological cancer are common. Due to challenges in accessing physiotherapy services, exploring virtual pelvic healthcare is essential. This study aims to understand needs, preferences, barriers, and facilitators for a virtual pelvic healthcare program for gynecological cancer survivors.

Methods. A multi-center, sequential mixed-methods study was conducted. An anonymous online survey (N=50) gathered quantitative data on pelvic health knowledge, opportunities, and motivation. Focus groups (N=14) explored patient experiences and consensus on pelvic health interventions and virtual delivery. Quantitative data used descriptive statistics and focus group analyses employed inductive thematic analysis. Findings were mapped to the Capability, Opportunity and Motivation (COM-B) behavior change model.

Results. Participants reported lacking knowledge about pelvic health interventions and capability related to the use of vaginal dilators and continence care. Barriers to opportunity included lack of healthcare provider initiated pelvic health discussions, limited time in clinic with healthcare providers, finding reliable information, and cost of physical therapy pelvic health services. Virtual delivery was seen favorably and may help to address motivational barriers related to embarrassment and frustration with care.

Conclusion. Awareness of pelvic healthcare is lacking among people treated for gynecological cancer. Virtual delivery of pelvic health interventions is perceived as a solution to enhance access while minimizing travel, cost, embarrassment, and exposure risks.

Implications for cancer survivors. A better understanding of the pelvic health needs of individuals following gynecological cancer treatments enables the development of tailored virtual pelvic floor rehabilitation interventions which may improve access to pelvic health survivorship care.

Gynecologic cancer

pelvic floor

urinary incontinence

pelvic health

telerehabilitation

sexual dysfunction

It is currently estimated that gynecologic cancers account for 1.4 million new cancer diagnoses worldwide every year [1]. In Canada, gynecologic cancers account for % of all new cancer diagnoses in individuals of the female sex. Gynecologic cancers include cancers affecting the uterus, cervix, ovaries and fallopian tubes, vagina and vulva. Surgery, chemotherapy, radiotherapy and immunotherapy are therapeutic modalities that have made important advances in reducing mortality over the last decade but which are not exempt from associated morbidity. Hormonal changes, in addition to tissue, structural and muscular impairments in the pelvic area following cancer treatment can lead to a variety of pelvic health concerns [2–4]. Urinary incontinence, dyspareunia, fecal incontinence and constipation are common impairments after gynecologic cancer treatments [5]. As more and more people live longer after being diagnosed with these cancers, the impacts left by these cancers can become chronic and life-changing conditions, resulting in a reduced quality of life [6]. Thus, the management of these symptoms is important to optimize quality of life during survivorship.

Evidence is emerging in support of pelvic health physiotherapy aiming to reduce pelvic health dysfunctions after gynecologic cancer treatments. In a systematic review conducted by Brennen and colleagues [7], a total of seven studies were identified examining pelvic floor muscle (PFM) interventions to address pelvic health impairments or improve PFM function. Most commonly, studies investigated interventions were PFM exercises and dilation therapy, with moderate benefits observed for sexual health and quality of life [7]. Recently published work also supports pelvic health physiotherapy treatments to reduce dyspareunia [8] and incontinence [9, 10] in this population. Although the evidence is beginning to accumulate, it is important to recognize the challenge for healthcare systems in providing access to pelvic healthcare services to all people being treated for gynecological cancer. Access to healthcare results from the cohabitation of the supply of care and services. This depends on geographical location, availability and cost, and the demand for such care and services, which, in turn, depends on the burden of morbidity after cancer, prior knowledge, skills and self-efficacy in managing impairments [11]. In other words, successful access would mean receiving the required care from a trained professional, at the right time and place.

As indicated by the World Health Organization, telehealth services can help improve patients' access to high-quality, cost-effective healthcare services, regardless of their location [12]. Given the difficulties associated with access to pelvic physiotherapy services, in Canada and elsewhere, a virtual format for the delivery of pelvic health services is one strategy to consider to facilitate access. To plan and develop a virtual pelvic healthcare program that would address individuals’ preferences and educational needs, it is imperative to better ascertain what constitute those preferences and needs. As such, this study aims to identify the needs, preferences, barriers and facilitators for the virtual delivery of pelvic healthcare for individuals treated for gynecological cancers.

Study design

To plan and develop a comprehensive and contextualized virtual pelvic healthcare program for people treated for gynecological cancer, a multi-center, sequential explanatory mixed-methods design was followed. This study was funded by the 2021 Patient Involvement in Cancer Research Programme Small Grant Competition from the Canadian Cancer Research Alliance and was approved by the Health Research Ethics Board of Alberta—Cancer Committee (HREBA HREBA.CC-21- 0498) and of the CISSS Bas-Saint-Laurent (CISSSBSL- 2021-10). The detailed methodology used is published elsewhere [13]. In brief, this study followed a two-phase approach starting with a cross-sectional online survey (phase 1), followed by a series of focus groups (phase 2). Phase 1 involved an online anonymous survey with 50 multiple choice and open-ended questions spanning five categories: demographics (including health status), urogenital symptoms, pelvic health knowledge, environmental and motivational factors. The questions were developed with input from investigator’s clinical experience, the research literature, patient-partners, and informed by the Theoretical Domains Framework (TDF). Questions were mapped to the Capability, Opportunity, Motivation-Behavior Change (COM-B) model for behavior change [14, 15]. This approach allows for the selection of specific implementation strategies to target identified components [16]. Eligibility criteria for participating in the survey were to 1) have a gynecological cancer diagnosis (any stage); 2) be at least 18 years old; 3) reside in Canada; 4) be able to read and understand English or French; 5) had received at least one cancer treatment; and 6) have internet access from their home or their community center. Exclusion criteria included having any concurrent cancer and having any cognitive impairments limiting the ability to complete the questionnaire. Phase 2 involved a series of focus groups to explore findings of the survey, and to gather patient experiences and consensus regarding pelvic health interventions and virtual delivery of pelvic healthcare. Thorne's interpretive description methodology was applied to gain an in-depth understanding from the perspective of individuals treated for gynecological cancer with pelvic health concerns [17]. Open-ended questions based on the responses to the survey were used to drive discussions on survivorship care and virtual pelvic health interventions.

Sample size and recruitment

Based on prior works, a sample size of 50 participants was targeted for Phase 1 [18, 19]. Participants were identified and invited from patient research databases, medical follow-ups, and patient support groups, as well as invited through social media campaigns (phase 1: convenience sampling). After completing the survey, respondants were invited to participate in a focus group for the second phase of the study (Phase 2: self-selection sampling). Sample size for the focus groups was estimated at 10–15 participants, or until saturation of themes was achieved.

Data Collection

Phase 1: after providing consent, participants were provided with a secure link to to access the survey hosted on the Research Electronic Data Capture (REDCap) database [20]. Completion of the survey took between 15 to 25 minutes. For Phase 2, the focus group sessions were conducted using the encrypted Zoom platform using the Focus privacy mode and lasted approximately 90 minutes. The principal investigator (SB) facilitated and moderated the discussions, while a second researcher was present to monitor and take field notes.

Patient and public involvement

This study follows the Strategy for Patient-Oriented Research, involving a total of 3 patient-partners (PPs). PPs in this study were from various Canadian provinces, were treated for various cancer diagnoses, and spoke either French or English. PPs were actively engaged at various stages of the research according to their availability, from the design to the dissemination stages. They contributed according to their preferred level of engagement in reviewing proposals, conducting analyses, and contributing to manuscript writing. PPs also contributed to identifying important survey questions and ensuring study materials were inclusive and relevant. PPs played a crucial role in applying the Equity, Diversity and Inclusion strategy, in elaborating data themes, in offering their perspectives on both the survey and focus group analyses, and in reviewing this manuscript.

Analysis

Quantitative data from both nominal and ordinal scales were collected from the survey. Means and standard deviations were calculated for continuous descriptive data from the medical and demographic variables, while frequencies and percentages were determined for nominal data. Further, frequency and percentages were determined for quantitative questions related to needs, barriers, and facilitators items of the survey. Statistical tests were conducted using Statistical Package for the Social Sciences version 28.0 (IBM Corp, Armonk, NY) program. In accordance with Braun and Clarke, a six step inductive thematic analysis process was followed for the focus group analyses [21]. Two research team members (SB, DP) first read through all transcripts and coded the data independently. A coding scheme was inductively developed, and consensus was achieved between researchers for a final coding scheme. Then, the two research team members independently identified themes and met to discuss recurring and converging themes, until consensus was reached. Two other research team members (MM, SD) then reviewed the themes and data within each theme and provided additional suggestions for the final themes and theme description. Final integration of Phase 1 and 2 mixed-method results was conducted using a connection of phases approach, mobilized and merged into a figure and further interpreted in the Discussion section, in accordance with Pluye and colleagues (2018) [22].

A total of N = 50 individuals completed the online survey between March 2022 and February 2023. Socio-demographics and medical characteristics of the participants are detailed in Table 1. While participants were from five different Canadian provinces, the majority of participants were from the province of Alberta (80.0%) and answered the survey in English (86.0%). Most participants were aged 55 years old or older and were treated for uterine and ovarian cancer, with 22.0% remaining in either active cancer treatment or surveillance. The most commonly received cancer treatment among respondents was surgery, followed by chemotherapy.

Table 1

Sociodemographics and medical characteristics of the participants
	Number (%)
Language English French	43 (86.0) 7 (14.0)
Province of residence Alberta Québec British-Columbia Manitoba Ontario	40 (80.0) 5 (10.0) 3 (6.0) 1 (2.0) 1(2.0)
Gender Woman Male Transgender Male Transgender Female Non-binary	49 (98.0) 0 (0.0) 1 (2.0) 0 (0.0) 0 (0.0)
Age 18–34 years old 35–54 years old 55–74 years old 75+	2 (4.0) 18 (36.0) 27 (54.0) 3 (6.0)
Employment Retired Unable to work (sick-leave or disability) Temporarily unemployed Part-time Full-time Homemaker	15 (30.0) 14 (28.0) 0 (0.0) 6 (12.0) 11 (22.0) 4 (8.0)
Marital Status Single Married / Common-law Divorced/Separated Widowed	9 (18.0) 34 (68.0) 6 (12.0) 1 (2.0)
Parity 0 1 2 3 4+	15 (30.0) 6 (12.0) 16 (32.0) 8 (16.0) 5 (10.0)
Diagnosis Uterine Cancer Cervical Cancer Ovarian Cancer Vaginal Cancer Vulvar Cancer	23 (46.0) 7 (14.0) 18 (36.0) 1 (2.0) 1 (2.0)
Stage of disease 1 2 3 4 Unsure	16 (32.0) 3 (6.0) 22 (44.0) 7 (14.0) 2 (4.0)
Treatment status Undergoing cancer treatment Maintenance cancer treatment Finished cancer treatment Surveillance	6 (12.0) 5 (10.0) 26 (52.0) 13 (26.0)
Treatment received None listed Surgery Radiation Therapy Chemotherapy Hormone therapy	2 (4.0) 45 (90.0) 14 (28.0) 37 (74.0) 9 (18.0)
Last oncology treatment Less 1 year 1–2 years 3–5 years 5 years +	26 (52.0) 9 (18.0) 8 (16.0) 7 (14.0)

Results from the Pelvic Floor Bother Questionnaire to screen for pelvic floor dysfunction are illustrated in Fig. 1, where the most prevalent symptoms were stress urinary incontinence (58.0%), closely followed by frequent urination (56.0%) and urinary urgency (48.0%). Twenty-one individuals (42.0%) reported being sexually active, with 16 (76%) reporting that pain affected their ability to enjoy sex.

Capabilities

Quantitative results from the survey highlighted heterogenous self-perceived knowledge and capabilities with regards to pelvic health, pelvic health dysfunctions and pelvic health interventions (see Fig. 2). Although several participants indicated having good knowledge on specific pelvic health topics such as pelvic organ prolapse (81.6%) and bowel leakage (75.5%), a large majority indicated that, overall, they did not feel they had good general knowledge of all pelvic health topics (85.7%).

Self-reported knowledge on a 0-100 visual analog scale about dilation therapy varied tremendously amongst participants, ranging from 0 to 96 with a mean of 29.04 (SD:32.87). From the narrative answers to the survey, several respondents acknowledged that they understood that strong PFMs were beneficial for urinary continence, but few reported having sufficient knowledge on the PFMs, on their role for sexual function, and on the impact of surgery on PFM function. No participants reported having an understanding of the role of PFM for bowel function. When prompted regarding the potential benefits of doing PFM exercises, the majority of respondents indicated that they believed it was possible to improve or prevent pelvic health dysfunction, mainly by doing PFM strengthening exercises. No participants reported the benefits of tailored PFM exercise to improve sexual function. With regards to dilation therapy, the majority of respondents indicated having no knowledge as to the potential benefits of performing dilation therapy. Among those who indicated having some knowledge, dilation therapy was limited to the description of a passive intervention that could prevent vaginal stenosis and facilitate penetrative activities such as intercourse and gynecological examinations. On the topic of pelvic health tools and interventions, most respondents indicated having none or only a little knowledge: the most frequently identified pelvic health tools known to participants were vaginal lubricants and moisturizers, with no clear distinction between the two. Overall, the results revealed that participants had some knowledge in relation to urinary symptoms, the role of PFMs and tools such as vaginal lubricants, but little confidence in the ability to perform pelvic health interventions such as PFM training or dilation therapy.

Opportunity

Results related to opportunity are detailed in Table 2. Half of the respondents had discussed their pelvic health with a healthcare provider over the course of their cancer treatment, with the respondent most often reporting being the person who initiated the discussion (62.5%). The majority (68.7%) of respondents indicated that they abstained from discussing pelvic health with their healthcare provider, mostly due to feeling embarrassed about these issues, and feeling that these issues were not as important as being cancer free. They identified a number of barriers to self-directed information retrieval, with the most common being not knowing what to look for or where to find reliable information. Narrative answers to the survey further added that respondents felt there was insufficient follow-up care regarding pelvic health issues. They identified factors that would facilitate access to pelvic health information and pelvic health care such as having information about pelvic health readily available in a printed or online format, and creating more opportunities to discuss issues during in-person follow-ups with the oncology healthcare practitioners. Respondents felt that pelvic health should be integrated as part of their overall health care, and become standard survivorship care.

Table 2

Opportunity and Accessibility of Resources on Pelvic Health
	Number (%)
	Yes	No
Opportunity to discuss pelvic health during your cancer treatments? With: Oncologist (including gynecologic oncologist) Radiation oncologist Nurse Pharmacist Family Doctor Physiotherapist Occupational Therapist Psychologist or Sexologist Unsure Other	24 (50.0) 6 (25.0) 6 (25.0) 6 (25.0) 0 (0.0) 2 (8.3) 9 (37.5) 2 (8.3) 4 (16.7) 2 (8.3) 6 (25.0)	24 (50) 18 (75.0) 18 (75.0) 18 (75.0) 24 (100.0) 22 (91.7) 15 (62.5) 22 (91.7) 20 (83.3) 22 (91.7) 18 (75.0)
Person who initiated the conversation on pelvic health: Patient-initiated discussion Health professional-initiated discussion	15 (62.5) 9 (25.0)	N/A
Timing of pelvic health discussion: During active cancer treatments During follow-ups after cancer treatments Through a brochure Other	10 (41.7) 11 (45.8) 4 (16.7) 9 (16.7)	14 (58.3) 13 (54.2) 20 (83.3) 15 (62.5)
Pelvic health topics discussed: Advice on pelvic floor muscle training Advice on bladder training Advice on dilation therapy Advice on lubricants and/or vaginal moisturizers Advice on constipation Other topics	15 (62.5) 5 (20.8) 9 (37.5) 15 (62.5) 11 (45.8) 2 (8.3)	9 (37.5) 19 (79.2) 15 (62.5) 9 (37.5) 13 (54.2) 22 (91.7)
After receiving recommendations on pelvic health: Conscious decision to follow those recommendations?	6 (25.0)	18 (75.0)
Other sources for pelvic health information: Friends and family Online resources Hospital brochures Support groups Other	0 (100.0) 2 (8.3) 1 (4.2) 1 (4.2) 2 (8.3)	24 (100.0) 22 (91.7) 23 (95.8) 23 (95.8) 22 (91.7)
Ever refrained from discussing pelvic health with health care provider? Because of concerns about confidentiality Because of feeling embarrassed about these issues Because of feeling that is not as important as being cancer-free Because of being unsure who to discuss these topics with Because of lack of time and opportunity to bring the topic up Other reason	33 (68.7) 0 (0.0) 10 (20.8) 8 (16.7) 6 (12.5) 5 (10.4) 3 (6.3)	15 (31.3) 48 (100.0) 38 (79.2) 40 (83.3) 42 (87.5) 43 (89.6) 45 (93.7)
Do you believe that it can be difficult to access information on pelvic health? Yes No Somewhat	13 (27.1) 13 (27.1) 22 (45.8)	N/A
Reasons why pelvic health information can be difficult to access: Barriers related to time Barriers related to travel Barriers related to costs Because of poor internet access Because of not knowing what exactly to look for Because of not knowing where to find reliable information Other reason	4 (8.3) 0 (0.0) 5 (10.4) 1 (2.1) 24 (50.0) 16 (33.3) 6 (12.5)	44 (91.7) 48 (100.0) 43 (89.6) 47 (97.9) 24 (50.0) 32 (66.7) 42 (87.5)

Motivation with virtual pelvic healthcare

Quantitative data related to motivational factors indicate that optimizing pelvic health is important (34/48; 70.8%) or somewhat important (14/48; 29.2%) to the survey respondents. A total of 70.8% of the sample indicated that they believed that performing pelvic health interventions could be beneficial to them, but only 60.4% thought they could do it on their own. Narrative answers to the survey highlighted that barriers to practicing pelvic health interventions included the lack of knowledge on available interventions and how to adequately perform them, a lack of understanding of the benefits of interventions, and the need for more guidance. While some respondents indicated that they believed that pelvic health interventions could be painful (20/48; 41.7%), they also believed that receiving pelvic health online would be either beneficial (68.8%) or could be beneficial (31.2%). Further, a mean comfort level of 62.7 (SD: 28.0) was found for discussing pelvic health or pelvic health interventions face-to-face, while the reported comfort level with discussing those topics online was 67.7 (SD: 23.6). Although respondents didn’t distinguish between synchronous and asynchronous options for virtual pelvic healthcare options, narrative answers revealed several facilitators for the virtual delivery of pelvic healthcare services: ease of access, convenient and comfortable, reduce costs associated with in-person physiotherapy, reduce costs associated with travel for in-person appointments, and reduced viral and microbial exposure for those who are immunocompromised.

Focus Groups

Fourteen participants, all English-speaking, participated in four focus group sessions. An interview guide for the focus groups was based on answers to the survey as a means to further understand the needs and preferences related to virtual pelvic healthcare delivery. Topics discussed were: 1) how cancer treatments affect pelvic health; 2) which pelvic health topics they wish they had more knowledge about; 3) experience of discussing pelvic health with a healthcare provider; and 4) perceptions on the virtual delivery of pelvic health interventions. Additional exemplar quotes can be found in Supplementary File 1.

Themes related to Capabilities, Opportunities and Motivation:

Pelvic Health Awareness

Participants expressed a lack of awareness and information regarding pelvic health, especially in the context of cancer treatment. They highlighted the need for more knowledge about the pelvic floor, its functions, and how cancer treatments impact it. Participants mentioned the absence of information classes or programs related to pelvic health after cancer, in contrast to other topics such as will-making or car maintenance that are offered to people with cancer.

-“There's so much information here about breast cancer. But there's nothing about female cancers below the belt. Yeah, it's really sad.” (FG3SP2)

-“There wasn't much support or education or resources about [pelvic] health, really, that I could find. So I think almost all of it was a learning adventure, and really trying to find out the right resource to help you along; that's been challenging as well.”(FG2SP4)

Emotional Impact of Pelvic Health Challenges

Various emotional responses were expressed by participants in relation to their pelvic health challenges resulting from cancer treatment. This included feeling concerned, overwhelmed, scared, embarrassed, and frustrated. Participants described the emotional toll these issues had on their overall well-being and quality of life, emphasizing the need for more support that addresses both the physical and emotional aspects of their lived experiences.

- “I think after the surgery, and after the chemo, and after everything, it was almost scary. (…) you're worried that you're going to hurt something else down there or whatever.”(FG2SP3)

Medical Professional Engagement

Several participants mentioned that medical professionals, including doctors and oncologists, avoided discussing or asking about pelvic health. Some participants expressed reluctance to discuss pelvic health issues; and stated a preference, and the importance of having this conversation initiated by their healthcare professionals. They also expressed that they are unsure of which member of the healthcare team to discuss these topics with, or had too little time to bring the topic up during follow-ups. They also raised the question of when along the healthcare pathway should pelvic health be discussed and if it could be beneficial to have these conversations prior to surgery and/or treatment.

-“Sometimes asking “how you doing” isn't quite enough to elicit that kind of information (…) We have a certain amount of reticence to speak directly about it if it's not directly spoken about first.” (FG1SP2)
-“ It was sort of a figure it out on your own and look [out] for your own health.” (FG1SP3)

Lack of other Resources

Many participants described the lack of information resources or pamphlets addressing pelvic health issues related to cancer treatment. They expressed the need for educational materials to be more readily accessible so that they could understand and manage their pelvic health when they felt ready to do so. They also highlighted that with pelvic health being larger than sexual health, that dedicated resources not be offered solely through sexual health educational classes to account for those who are not sexually active.

Physical Therapy and Rehabilitation

Participants highlight the potential benefits of physiotherapy and rehabilitation for pelvic health. They suggest including physiotherapists as part of the medical team to address these issues.

Themes related to Facilitators and Barriers related to Virtual pelvic health care:

Access and Equity

Issues related to equitable access to pelvic health information and resources, with a focus on overcoming language, literacy, and cultural barriers were discussed by participants. Participants expressed concern about individuals who do not speak English or are illiterate, highlighting the need for resources that can be relatable and overcome language and literacy barriers using translation services, audio and visual support. Participants discussed the importance of considering the cultural diversity of individuals seeking information about pelvic health and suggested that online resources need to be available in different languages. With the flexibility to include several translations, video support, animations and illustrations, a virtual pelvic health program is perceived as a facilitator to account for diversity and for equitable access to pelvic healthcare.

Affordability of resources

Participants expressed concerns about the affordability of certain healthcare resources, such as physiotherapy services. They highlighted the need for cost-effective alternatives and resources that do not impose a financial burden on individuals. Since publicly funded pelvic physiotherapy is often not available as part of cancer care, the only option is to pay for services privately in the community. Virtual pelvic health care is perceived as a facilitator to access affordable resources.

Generational Perspectives

Participants acknowledged differences in generational perspectives towards online resources, which can influence the adoption of these tools with younger generations being more at ease with them. However, participants also highlighted the changing attitudes towards online resources and telehealth, which have become more acceptable and accessible. Some participants acknowledged that hesitations have lessened, especially since the COVID-19 pandemic.

Online Anonymity

Participants acknowledged that online platforms can provide a level of anonymity, reducing embarrassment for those who might be uncomfortable discussing pelvic health issues openly. The ability to seek information and support discreetly is seen as an advantage.

The value of in-person meetings

The importance of physical examinations, physiotherapy, and exercises was emphasized, highlighting the physical aspect of pelvic healthcare. Some participants valued physical examinations and aspects of in-person care and believed that online resources may not fully replace the physical aspect of healthcare. The respondents suggested that a hybrid approach may be necessary to fully address diverse patient preferences and needs.

Information Accessibility

The availability of information through various channels, including brochures and pamphlets, was discussed as an important aspect of accessibility. Online programming was perceived as a relevant potential channel, especially with finding information on the internet already ingrained in everyday habits. However, the availability of alternative sources of information such as brochures, pamphlets, or easy-to-access information was mentioned as important, especially for individuals who may not have internet access. Participants also highlighted the need for the medical community to promote any existing pelvic health programs or resources, highlighting their role in bridging the gap between online resources and the patients, emphasizing collaboration for better healthcare.

Merging of quantitative and qualitative data is illustrated in Fig. 3.

Findings of this study highlighted the vast needs related to the pelvic healthcare of individuals affected by gynecologic cancers, and their eagerness in receiving appropriate survivorship care. In planning and implementing interventions to improve pelvic health after gynecologic cancer, it is important to first consider the lack of knowledge and skills associated with pelvic healthcare in this population. Quantitative and qualitative data related to capabilities from this study support that awareness of pelvic health is insufficient. Although respondents indicated that they had familiarity with specific topics, such as the management of constipation, the results show that it was for topics where respondents were the least knowledgeable that the most prevalent symptoms (i.e. urinary incontinence) were found. Of course, these results do not suggest that knowledge has led to the prevention of certain pelvic health problems, but rather illustrate the lack of an adequately tailored response to the needs of this population. Secondly, participants expressed the need to understand pelvic health contextualized to their history of cancer. They expressed that a better understanding how the cancer treatments may impact their pelvic health function would decrease worry that these symptoms could be signs of cancer recurrence or that they could harm themselves by performing interventions. Respondents also expressed a desire to better understand how pelvic health interventions should be adapted to the post-cancer experience, as well as to learn more about potential benefits in this distinct context.

Findings related to capabilities from this study have some similarities from the cross-sectional study led by Stabile et al [23] on sexual health needs after cancer, where knowledge on vaginal lubricants and moisturizers was much higher than on vaginal dilation therapy (95% and 72% vs 41%). Findings related to opportunity also concur with those of Stabile and colleagues, with only half of the participants having discussed pelvic health with a healthcare provider (48% for sexual health in Stabile et al.). Merging of the quantitative data and qualitative data highlights a disconnect between what participants experienced, with 62.5% of the pelvic health discussions being initiated by the patient, and the stated belief that it was the heath professional’s responsibility to initiate and allow time for discussion. One difference with the study by Stabile et al. [23], is that 73% of their participants reported that they had options or resources to improve their sexual health, whereas the need for physical and emotional support in addressing pelvic health concerns post-cancer was emphasized in our study. These differences may be attributed to the fact that in Stabile et al., the sample included people after both breast and gynecological cancers. It is possible that cancer survivorship services offered may differ between cancer types, as suggested in the participants in our focus groups. Participants in our study asked for more equity in access to pelvic health survivorship care, firstly for themselves compared to what may be offered for those affected by other cancers or compared to other services routinely offered to them (e.g. how to make a will). Secondly, participants made it clear that to promote equity in access to these services, it is imperative to consider cultural diversity in the development of the resources, for example, with considerations given to differences in basic knowledge of anatomy and sexual function, in language, or cultural preferences.

Among respondents, virtual care was perceived as a facilitator to accessibility to pelvic health survivorship care. Merging of quantitative and qualitative data revealed coherence between identified barriers to access pelvic healthcare, such as travel and costs, and the facilitators identified during the focus groups. Further, identified barriers such as “not knowing what to look for” or “finding reliable information” were consistent with potential reported facilitators of having the healthcare providers bridging the gap between the patients and online resources to facilitate access to appropriate information. In contrast to the findings of Stabile et al., participants of our study perceived online interventions favorably regardless of their age, indicating that many prior technological barriers were reduced post-pandemic. However, participants also highlighted the value of physical assessments and suggested that hybrid methods, when available, may offer the best solution.

There are several strengths to this study. In addition to having reached our target sample size, our sample is diverse and generalizable in respect to the reported demographic of Canadians with gynecological cancer and with the prevalence of pelvic health symptoms found in this population [5, 24]. Another strength of this study is the alignment of the research with the Strategy for Patient-Oriented Research and its Equity, Diversity and Inclusion strategies. Namely, the study was co-led with patient-partners, and ensured participation of people from diverse gender backgrounds. In terms of limitations, a larger sample from the broader Canadian community would have allowed us to identify the needs and preferences by specific cancer types and by different participant characteristics.

People treated for gynecological cancer face a variety of pelvic health adverse effects, with urinary incontinence symptoms identified as the most common. There is a clear need for greater awareness of the benefits of pelvic health after gynecological cancer, and of the availability of pelvic health interventions. While the need for healthcare provider initiation of pelvic health discussions was seen as a barrier to receiving pelvic health survivorship care, virtual delivery was seen as a facilitator of access by reducing travel, cost, embarrassment and microbial and viral exposure. In the context of geographically dispersed patient population in Canada, virtual health care delivery must be considered as a means to facilitate access.

ACKNOWLEDGMENTS

Stephanie Bernard was supported by a postdoctoral fellowship scholarship from the Fonds de Recherche du Québec Santé (FRQS) while conducting this work.

Funding

This study was funded by the 2021 Patient Involvement in Cancer Research Programme Small Grant Competition from the Canadian Cancer Research Alliance.

Competing Interests

The authors have no relevant financial or non-financial interests to disclose.

Author Contributions using CRediT Classification:

SB, EW, AW, SS, JT, PT, SD & MM: Conceptualization, Methodology.

SB, EW, AW, SS, JT, PT & MM: Funding acquisition.

SB, DP, SD, MM: Formal Analysis.

EW, AW, SS, JT, MM: Supervision, Resources.

SB: Writing: Original draft preparation.

EW, AW, SS, JT, SD, DP, MM: Validation and Writing: Review and Editing.

SB, DP, MM: Visualization.

Data Availability

The data generated by the current study may be made available upon reasonable request.

Ethics approval

This study was approved by the Health Research Ethics Board of Alberta—Cancer Committee (HREBA HREBA.CC-21- 0498) and of the CISSS Bas-Saint-Laurent (CISSSBSL- 2021-10).

Consent to participate

Informed consent was obtained from all individual participants included in the study.

Consent to publish

N/A

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Comité consultatif des. statistiques canadiennes sur le cancer, en collaboration avec la Société canadienne du cancer, and Statistique Canada et l’Agence de la santé publique du Canada, Statistiques canadiennes sur le cancer 2022. Société canadienne du cancer; 2022.

No competing interests reported.

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Editorial decision: Revision requested
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« Figure it out on your own »: a mixed-method study on pelvic health survivorship care after gynecologic cancer treatments

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Abstract

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INTRODUCTION

METHODS

Study design

Sample size and recruitment

Data Collection

Patient and public involvement

Analysis

RESULTS

Capabilities

Opportunity

Motivation with virtual pelvic healthcare

Focus Groups

Themes related to Capabilities, Opportunities and Motivation:

Themes related to Facilitators and Barriers related to Virtual pelvic health care:

DISCUSSION

CONCLUSION

Declarations

References

Additional Declarations

Supplementary Files

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Journal Publication

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