Participants were women who were experiencing symptoms of PGAD/GPD for a minimum of 3 months. The inclusion criteria for PGAD/GPD were based on its clinical descriptors [6,17]. PGAD/GPD includes experiencing feelings of persistent, involuntary genital arousal sensations that (1) are not fully relieved by one or more orgasms; (2) occur in the absence of subjective feelings of sexual arousal; (3) persist (ie, last longer than 30 minutes); (4) are experienced as intrusive and unwanted; and (5) are experienced as subjectively distressing.

In order to be eligible to participate, participants were also required to be 18 years of age or older, fluent in English, and not experiencing any other serious mental health concerns that would interfere with their ability to participate in the group sessions (examples included, but were not limited to, substance use disorder, borderline personality disorder, and psychosis). In order to determine the effectiveness of the program, participants were asked to not make any changes to their PGAD/GPD treatments or medications during the course of the 8-session weekly program.

Participants were recruited online via social media advertisements (ie, Facebook, Twitter, blog posts) and postings on relevant websites and listservs to patients and health care professionals. Our laboratory also has a database of participants from past research studies who consented to be notified about additional research opportunities. Initially, 19 women contacted the study team to express interest in participating, and 17 underwent a phone screening with a member of the study team to confirm eligibility. See Figure 1 for a depiction of participant flow.

Questionnaires were completed before the start of the group (Time 1), immediately after the final group session (Time 2), and 6 months following the final group session (Time 3). See Figure 2 for an outline of the measures included at the different time points of the program.

The study received approval from the Queen’s University (Kingston, ON) Health Sciences and Affiliated Hospitals Research Ethics Board. Following the telephone screening, eligible participants were directed to an online survey hosted by Qualtrics survey software to complete before the group began (Time 1). After reading a Letter of Information and providing their consent to participate, participants completed the survey, which took approximately 30 to 45 minutes.

The online group education program ran from January to March of 2018. The program included 8 weekly sessions, each lasting 120 minutes. The sessions were hosted on Zoom videoconferencing software. The Zoom software transmits only encrypted information, with multilayer security and end-to-end encryption (“Encryption for Meetings”, 2019). As such, Zoom is in accordance with the Health Insurance Portability and Accountability Act (HIPAA, 1996). Participants were provided with detailed instructions on how to use Zoom, and a team member (KMM) was present during all sessions to assist with any technical difficulties. Moreover, participants in the group were instructed to respect and maintain the confidentiality of other members of the group. The topics presented in each of the weekly education sessions are presented in Table 1.

Each of the 8 sessions followed a set structure. First, participants were welcomed, and the educational topics for the session were introduced. Then, participants were guided to perform a breath technique to center/focus on the present. Following the breathing exercise, the educational topic of the session was presented by a registered physical therapist (EH), who then demonstrated the exercise introduced that session. Following the demonstration, the physical therapist then provided verbal guidance for participants to perform the exercise. Participants then engaged in a discussion about the topic, and the session ended with a question and answer period. There was no cost to participants for the group educational sessions, and no compensation was provided. When participants missed a session, they were provided with handouts summarizing the material presented in that session. Immediately following the completion of the online program, participants were sent a link to complete the online questionnaires for a second time (Time 2). Participants were also sent the same online questionnaires 6 months following completion of the program (Time 3).

The final sample contained 14 participants at the start of the group (Time 1), 6 participants at the end of the group (Time 2), and 5 participants at the 6-month follow-up (Time 3; see Figure 1).

Demographic and symptom characteristics for participants who completed the Time 1 questionnaires (n=14) are presented in Table 2. Participants were, on average, 43.71 years old (SD 17.65; range: 18 to 71). With respect to PGAD/GPD symptoms, participants reported a long average duration of symptoms (mean 7.43 years, SD 10.25), and a moderate to high level of associated distress and discomfort (Table 2).

Of those who completed the Time 1 questionnaire, 7 attended 5 or more of the sessions, and 7 attended less than 5 sessions. For most absences, no reason was provided; when reasons were provided, the most common ones were a scheduling conflict (9 absences) or being too sick/tired (5 absences). To better understand who attended the majority of the program sessions, health history, symptoms, and psychosocial well-being are presented for those who attended 5 or more versus less than 5 sessions (Table 3). Visual inspection of the data suggested that those who attended 5 or more sessions were younger, reported more gynecological comorbidities, and reported less severe PGAD/GPD symptoms (lower associated discomfort, lower associated distress, and symptoms were present for shorter amount of time). They also reported lower baseline depressive and anxiety symptoms and lower symptom catastrophizing; however, they reported greater sexual distress. Overall, it appears that those with less severe PGAD/GPD symptoms and associated psychosocial concerns attended the majority of the program sessions. Graphs representing all individual responses for each individual participant are presented in Multimedia Appendix 1.

At Time 2, participants rated their overall perceived improvement to be 13.5% (SD 20.29; range: 0% to 50%; n=6). At Time 3, participants rated their overall perceived improvement to be slightly higher (mean 15.0%, SD 11.18; range: 0% to 30%; n=5). Descriptive information about symptom characteristics, psychosocial adjustment, and sexual well-being at all 3 time points is presented in Table 4. An overall pattern emerged, such that PGAD/GPD symptoms and psychosocial well-being improved across time, with the exception of discomfort associated with PGAD/GPD symptoms, which increased at Time 2 but decreased at Time 3. These results are consistent with the small improvements reported on the global improvement measure. Depression symptoms, anxiety symptoms, and sexual distress decreased following the group; however, the average scores remained within the range indicating clinically significant levels. The average score of symptom catastrophizing (M-PCS) fell in the range indicating clinically significant catastrophizing at Time 1 but decreased at Times 2 and 3 to a score that no longer fell in the range indicating clinical significance. Individual responses on each of the outcome variables, plotted across the 3 study time points, are presented in Multimedia Appendix 2.

At Time 2, 8 participants completed an anonymous feedback questionnaire about their experience attending the program. Overall, breathing and relaxation exercises were described to be the most helpful home practice exercises by the majority of participants (n=7). On average, participants reported a moderate ability to complete the home practice exercises (mean 2.0, SD 0.9). Participants reported that the most helpful topics were sessions that (1) discussed the relationship between emotions, discomfort, and PGAD/GPD symptoms (n=3) and (2) included relaxation exercises (ie, breathing, visualization; n=2). The sessions that were rated as least helpful were those on (1) nutrition (n=2) and (2) sleep and strength training (n=1). Ratings of mindfulness and the science of pain/discomfort received a mixed response (1 positive and 1 negative rating for each). All participants reported that they were happy with the number and length of the sessions, although one additionally specified that they would prefer biweekly sessions. Only 1 participant indicated that the inclusion of partners in the group would be helpful (no: n=5; not sure: n=2).

Open-ended responses on the feedback questionnaire are presented in Textbox 1. When asked what was helpful about the sessions, themes emerged of normalization (eg, “not as alone as I feel”), support to complete ongoing interventions for the PGAD/GPD symptoms (“reminders of some of what I was already doing,” “having a focus each week”), and hopefulness (“made me once again think about what I can do to handle this”). When asked what would help participants to complete the home practice exercises regularly, 2 participants identified barriers to completing the exercises: timing of the sessions and health concerns. Two participants offered concrete changes to the structure of home practice exercises: a brief note summarizing the home practice exercises at the end of each session (n=1) and more personal interaction during the program (n=1).

To our knowledge, this study is the first to examine the feasibility of an online pelvic floor group education program for PGAD/GPD. PGAD/GPD is associated with significant negative psychosocial impact [13], and there is great need for empirically based treatment interventions that address both PGAD/GPD symptoms and their consequences [10]. Given the limited information on and treatments available for PGAD/GPD [10,14], online interventions have the opportunity to reach many individuals who may not otherwise have access to treatment for PGAD/GPD. There is growing evidence that web-based health interventions can be effective in promoting knowledge and behavioral change in the management of other chronic illnesses [23].

Descriptive results regarding participants who attended the majority of the group sessions suggested that they were younger and reported less severe PGAD/GPD symptoms and associated psychosocial concerns (eg, symptom catastrophizing, depression, and anxiety) than those who attended fewer sessions. In addition, those who attended the majority of the sessions and completed the Time 2 and 3 outcome measures reported small improvements in PGAD/GPD symptoms (proportion of time present, distress, and discomfort) and psychosocial well-being (depression symptoms, anxiety symptoms, catastrophizing of PGAD/GPD symptoms, and sexual distress). These results indicate that regular participation in an online group program may be beneficial in terms of outcome. However, these findings also suggest that, even when intervention is presented via an online format, participants with more severe PGAD/GPD symptoms and associated psychosocial consequences may still face barriers to engaging in such an intervention.

Indeed, previous studies have found that PGAD/GPD symptoms interfere with daily activities, such as sitting for prolonged periods of time and the ability to concentrate [2]. This interference may have prevented those with more severe symptoms from more fully attending the intervention-based sessions, even remotely. Future intervention programs for PGAD/GPD should consider modifications and accommodations that would help to address barriers to participation. For example, the integration of asynchronous content to allow participants more flexibility in the timing of some of the more educational aspects of the program, in combination with shorter synchronous sessions, with frequent rest breaks for the more experiential and interactive components of the program, may be helpful. More significant psychosocial correlates of PGAD/GPD symptoms (ie, greater depression symptoms, anxiety symptoms, and symptom catastrophizing) could interfere with participation by reducing motivation to attend sessions and complete home exercises or by increasing avoidance of discussions or exercises that may be perceived to increase symptoms. Individuals experiencing significant symptoms of depression, anxiety, or both may benefit from strategies to reduce depression/anxiety prior to, or concurrently with, pelvic health education.

We also collected feedback on the most and least helpful aspects of the program, with a view to use the knowledge gained to aid in the redevelopment of an online group intervention for those with PGAD/GPD. Based on the feedback, sessions that focused on stress management and the role of cognitions and emotions in the management of genito-pelvic discomfort and unwanted arousal seemed most helpful and should be included in future programs. Treatment approaches that focus on these aspects have been found to be effective for reducing pain and associated psychosocial difficulties in women with other forms of genito-pelvic discomfort (eg, vulvodynia [24-26]). Integration of these components early in the program may also help to address some of the barriers (ie, reducing distress and improving psychosocial well-being) to attending the program. Overall, in the feedback questionnaires, participants highlighted the value of normalization, hopefulness, and motivation/support to continue seeking treatments. The group format may be particularly valuable for individuals experiencing a condition, such as PGAD/GPD, that is surrounded by high levels of shame and hopelessness [3,13], and is often unknown within the health care community [14].

The results of this study must be considered in the context of several limitations. This study was descriptive in nature and relied on a small sample size. Future studies may seek to conduct a similar program in a larger sample, while addressing the barriers identified in this study. In addition, participants did not undergo a clinical exam to confirm their diagnosis of PGAD/GPD. However, an extensive phone screening interview reviewing the diagnostic criteria for PGAD/GPD was conducted, and previous research has found high agreement between self-reported symptoms and clinical diagnosis for samples of women with other forms of genito-pelvic discomfort (ie, vulvodynia [27,28]). Finally, there is no information about how PGAD/GPD symptoms change over time without intervention to use as a comparison to these results. While this sample reports a long duration of symptoms (7.43 years on average), the chronicity of PGAD/GPD is unknown. Research on other forms of genito-pelvic discomfort (ie, vulvodynia) has found that chronicity is heterogenous [29-31]. These studies also indicate that individuals with a longer duration of symptoms are more likely to report greater pain intensity, anxiety, comorbid chronic pain conditions, and a primary symptom onset [29-31]. More information about the chronicity of PGAD/GPD symptoms will aid in interpreting future treatment outcome research. Finally, the sample was limited to individuals with access to the Internet and a computer. Online interventions may have the ability to reach individuals who cannot travel for in-person interventions; however, a limitation is access to, knowledge of, and comfort with telehealth technology (such as videoconferencing software).

Online interventions provide an opportunity to reach international participants who may otherwise struggle to access a knowledgeable provider for their PGAD/GPD symptoms. The group format may also help to encourage hopefulness and normalize the experience of symptoms that are often surrounded by feelings of shame. This study is the first online intervention study for PGAD/GPD, and it describes the feasibility of an 8-session pelvic floor education program. Overall, participants were satisfied with the length and frequency of the sessions. Deep breathing and relaxation exercises were reported to be beneficial by almost all participants. A number of barriers to participating in the program were identified (greater symptom and psychosocial impairment, timing of the sessions, concurrent health concerns) that could be addressed to help improve the efficacy of future interventions and increase the ability of participants to fully engage in the program. Future programs for PGAD/GPD may increase their focus on stress management strategies and working with thoughts and emotions related to PGAD/GPD symptoms. Finally, the results reinforce that PGAD/GPD is a highly distressing condition associated with significant burden. More research is needed to identify treatments and interventions to support individuals with PGAD/GPD.