Sex, Pain & Endometriosis: The development of a patient-centred e-health resource for those affected by endometriosis-associated dyspareunia

Abstract

Background We recognized a paucity of accessible, evidence-based, empowering patient-centred resources for those with endometriosis-associated dyspareunia. We aimed to develop a patient-centred educational website for those affected by endometriosis-associated dyspareunia. Methods To develop a functional and meaningful website for endometriosis-associated dyspareunia, we utilized a Knowledge to Action framework, supplemented with a patient-centred research design and technology-enabled knowledge translation. Our patient partners influenced the direction and scope of the project, provided critical feedback throughout the development process, and approved website revisions prior to launch. The website was developed in five phases; 1) needs assessment interviews and focus groups with key stakeholders, 2) landscape analysis of pre-existing websites, 3) development, 4) usability testing, and qualitative interviews, and 5) revisions and launch. Results Phase 1 and 2 emphasized a need for comprehensive yet plain language explanations of pain mechanisms and strategies for pain management. Rigorous consultation with key stakeholders informed the creation of the preliminary website, which was tested in phase 4. User testing identified five main categories of usability problems, of which the majority were considered minor. Qualitative interviews identified users’ overall impressions of the preliminary website, including that the website could help people understand their pain and describe their pain to partners and healthcare providers, as well as feel empowered to seek healthcare and validated in their experiences. User suggestions, combined with usability testing informed revisions. Conclusion We developed an educational website for endometriosis-associated painful sex where people can find evidence-based etiologies for pain, pain management options, and actionable resources. Based on the data collected through qualitative interviews with patients, this website has the potential to empower people to seek health care. The strength of the website development approach used was the inclusion of qualitative user insights in addition to the commonly completed user tests. The patient interviews provided insights into the potential impact of the website and thus, ensured that we not only created a functional website that meets end users’ needs, but a website that is also meaningful to those affected by this condition.