Phase 1: Needs assessment
Three focus groups and two interviews were conducted with key stakeholders (knowledge producers and users) between January - March 2019, with the results summarized in Table 3. Knowledge producers included endometriosis researchers (n = 6) and health care providers (n = 6), and knowledge users included members of a patient research advisory board (n = 3), and community organizations (n = 2).
Table 3
Summary of results from the stakeholder interviews
Priority Website Audience | Important Website Topics/Content | Website Ambience |
● People with and without prior endometriosis diagnosis ● People with pain ● People who have not seen a tertiary referral clinic ● People outside large urban centres ● Inclusive of sexual orientations and gender identity ● People with low sexual function or low quality of life ● Partners, family, and friends ● Partners who feel powerless | ● Types of painful sex ● Causes of pain ● Treatment options ● Psychological impacts of painful sex ● Lived experiences with painful sex ● Messages related to how common painful sex is, management of pain is an individual experiences, the role partners play in supporting patients ● Communication strategies ● De-stigmatizing and myth dispelling messages ● Actionable and proactive methods for improving health ● Information for partners ● Information to facilitate finding an endometriosis specific healthcare provider ● Information free from overt bias | ● Positive messages ● Plain language ● Inclusive language ● Infographics/images ● Interactive features/images ● Hope ● Optimism ● Diversity ● Sense of connection ● Empowerment ● Validation |
Phase 2: Landscape analysis
We reviewed 17 websites that contained information about endometriosis and dyspareunia. We could not find a website that was solely dedicated to providing information about endometriosis-associated dyspareunia. Most websites had a single webpage with a brief description of the etiology and limited discussion of evidence-based treatment and self-management options for dyspareunia.
Phase 3: Website development
The preliminary website contained eight pages as follows; 1) a home page where viewers are introduced to the website, 2) an endometriosis page where a general description of endometriosis could be found, along with an interactive diagram, 3) a painful sex page that included a detailed description of the different types of painful sex, along with interactive diagrams, 4) a mechanisms page where a thorough description of how changes in the nervous system and emotions and experiences contribute to pain with sex, 5) a treatments page that included a description of the available pain management options and links to guidelines set out by different countries, 6) a resources page that included links to global community networks and other educational websites about sex, 7) a frequently asked questions page that included answers to common questions about endometriosis, painful sex and fertility, and 8) an about us page that described the website creation team.
Phase 4A: Usability testing
We completed usability testing with 12 participants who all self-identified as heterosexual, were from a large metropolitan area, and ranged in age from 30 to 63 years (mean age 39 years). Participant descriptive characteristics are listed in Table 4. For this phase of the study, we did not collect data on relationship status, educational level, or diagnosis because these variables were not applicable to someone’s ability to use and navigate through the website.
Our findings revealed 31 unique usability problems categorized under Kushniruk and Patel's (2004) five main usability categories. These included problems related to; 1) navigation or finding desired information, icons, and labels; 2) participants’ understanding of labels, icons, and content; 3) timely systems’ response; 4) content, and 5) a mismatch between the users' expectations of the type of content found through hyperlinks to different pages within the website compared to the actual content found through these hyperlinks. Except for the absence of a search bar and confusion about the word ‘mechanisms’, all other usability problems were considered minor and could be resolved through website revision to ensure a positive user experience.
Despite these minor problems, the findings suggested good overall usability and participant satisfaction with the website. These tests also revealed that this website may reduce stigma related to dyspareunia by providing emotional safety, empowering people to collaborate with healthcare providers or with other patients, validating people's experiences and by ensuring the credibility of the content. A detailed description of the methodology, coding strategy, findings and recommendations for the usability testing will be published in a subsequent manuscript.
Phase 4B: Qualitative user insights
We interviewed 20 people with experiences of endometriosis-associated dyspareunia, ranging in age from 18 to 44 years (see Table 4).
Table 4
Descriptive characteristics of the participants recruited in phase 4A and B
Descriptive Indicator | Usability Tests | User Insights |
N | 12 (100.0) | 20 (100.0) |
Mean Age (min, max) | 38.75 (30.2, 47.3) | 31.5 (18, 44) |
Sexual Orientation | | |
Heterosexual | 12 (100.0) | 16 (80.0) |
Bisexual | 0 (0.0) | 2 (10.0) |
Pansexual | 0 (0.0) | 1 (5.0) |
Homosexual | 0 (0.0) | 1 (5.0) |
Relationship Status | | |
Partnered | - | 17 (85.0) |
Unpartnered | - | 3 (15.0) |
Ethnicity | | |
Caucasian | 6 (50.0) | 18 (90.0) |
South Asian | 0 (0.0) | 1 (5.0) |
South American | 2 (16.7) | 1 (5.0) |
Indigenous | 1 (8.3) | 0 (0.0) |
Did not disclose | 3 (25.0) | 0 (0.0) |
Educational Level | | |
College | - | 9 (45.0) |
Graduate School | - | 6 (30.0) |
High School | - | 4 (20.0) |
Vocational School | - | 1 (5.0) |
Endometriosis clinically suspected or confirmed diagnosis | 12 (100.0) | 20 (100.0) |
Previous histological diagnosis at prior surgery | - | 10 (50.0) |
Visual diagnosis at prior surgery | - | 5 (25.0) |
Current endometrioma on imaging | - | 1 (5.0) |
Clinically Suspected based on history and examination | - | 4 (20.0) |
We categorized participant perspectives according to their overall impressions and suggestions for improving the website as depicted in Fig. 2. Overall impressions centred on the utility of the website, unique aspects of the design and content. More specifically, the participants highlighted the utility of the preliminary website as an educational resource, an important feature considering participants’ self-described limited understanding of painful sex as a symptom of endometriosis.
“And to have a website like what you guys had like, had I had that, I think I would have been in much better shape and I’m not just saying that, I went through that website for 45 minutes and was like, wow, it’s answered most of my questions I had when I was not knowing what was going on.” (Participant 14)
According to participants, they would have used this website to help describe their pain to healthcare providers and their intimate partners if it existed when they were younger. Moreover, if the participants had had access to this website previously, they would have felt empowered to seek healthcare sooner. They further highlighted how the website validated their experiences of pain and could help others with endometriosis feel less alone.
“I was trying to read it through a lens of like I was 17 and I found this website. Would this be something that would intrigue me or would make me feel better? I think for sure it would have been like, there’s a whole website on this. I’m not by myself. There’s other people!” (Participant 13)
Unique aspects of the website design and content that participants appreciated included the use of plain language and the pacing and spreading out of digestible rather than text-heavy, overwhelming information. This aided the comprehension and conceptualization of information. The participants also appreciated that the website was inclusive of different gender identities, sexual orientations, and ethnicities, as well as the use of interactive features and biological images to help visualize endometriosis and factors contributing to pain.
“I know general anatomy and physiology and it’s hard to kind of know exactly where I’m feeling certain things, so I definitely found that [diagram] helpful.”(Participant 2)
The participants also provided suggestions for improving both the website content and design. Specific to content, further information about endometriosis including a list of associated symptoms was recommended, as were additional plain language descriptions of terms such as ‘deep penetration’ and ‘mechanisms’. There was also a suggestion to convey how information in one part of the website relates to information in another section, for example, including an explanation of how pain management options work together to reduce pain rather than presenting them as separate entities.
“I like your four boxes...but I feel like people might be trying to visualize a holistic approach to endometriosis or a synchronized approach…. These [treatment options] come together and they synchronize to help you when you’re dealing with painful sex... These aren’t four separate tabs to be considered. They actually work together...When I look at them as boxes, they kind of feel separate.” (Participant 14)
To improve the website design, the participants recommended adding a search bar to increase the efficiency of finding specific information. They also noted that some images did not match the seriousness of the topic and suggested alternative imaging to ensure a better match with the content and sentiment of the website as well as ensuring there were images that represented a diversity of intimate relationships.
“Going to the endometriosis page and seeing somebody’s head lovingly on their mother’s shoulder, that wouldn’t be comforting for me.” (Participant 11)
Participants suggested including more information about actionable self-management strategies or lifestyle changes such as diet and exercise, sexual positions that may reduce pain, as well as a plain language version of scientific papers, infographics, visual abstracts or educational videos they could share with others.
“There’s a lot of things you can’t access unless you have, like you’re behind a firewall, unless you’ve got a Pubmed login or something. And so if there’s public access, research or findings that could be shared on the website that it removes a barrier of having to figure out how to get that information otherwise.” (Participant 5)
“I think infographics are great. I think that that’s a great way to try to put things visually for people. I think it’s important for people who don’t understand how to read research”. (Participant 11)
User insights that fell within the capacity of the current site development were incorporated during the Phase 5 product revisions prior to website launch.
Phase 5: Product revisions and launch
Improvements were made in each of the five categories identified by the usability testing. 1) Navigation problems including broken or missing links were fixed and the clickable features were improved. A search bar was added to the website for ease of finding desired information. 2) The icons, labels and content that respondents found challenging were improved by translating terminology into plain language and by including more detailed information. For example, the term ‘mechanisms’ was changed to ‘what causes painful sex.’ 3) The system’s response, the loading time of the website, was improved by Tactica. 4) Content was reorganized, and additional web pages were created to allow for more thorough plain language descriptions. 5) The sections of the text that hyperlinked to different pages of the website and the corresponding redirections were altered to better match the expectations of the participants. Some examples of the revisions made are included in Table 5. Additionally, a search bar and links for sharing content on social media were added to each page.
Based on the qualitative user insights, a list of other endometriosis symptoms were added to the ‘endometriosis’ page, a plain language definition of deep penetration was added, more thorough descriptions were added to the ‘treatments’ page, stock images were adjusted to match the sentiment of the condition, and an additional space was created to add visual abstracts to provide users with downloadable content on emerging research and data. We further included video explanations about endometriosis, painful sex, and nervous system sensitization created by a research trainee and a patient partner as an auditory accompaniment to the written information.
Panel A shows an example of a stock image on the main page of the website that was changed to better match the content and sentiment of the website. This panel also shows the addition of a search bar at the top right side of the image. Panel B shows an example of how terminology was changed to become more plain language. The ‘mechanisms’ tab became the ‘what causes painful sex?’ tab. Within this tab, additional sub-pages were created to highlight the different mechanisms of endometriosis-associated painful sex and to reduce information overload for the user. Panel C shows how the section for ‘articles’ on the ‘resources’ page was changed to ‘research demystified’ to create space for infographics/visual abstracts.