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Abstract Study question Is it possible to improve quality of life of endometriosis patients using a personalized web app suggesting non-pharmacological interventions and lifestyle changes ? Summary answer A personalized web app is useful to improve awareness and quality of life of endometriosis patients What is known already Our project is based on four main considerations: first, there is a lack of information and awareness about endometriosis symptoms and possible treatments among affected patients; second, there is no definitive cure yet and nor medications nor surgery can be considered as definitive solution; third, web instruments and social media are useful nowadays to spread knowledges about the disease; fourth, non-pharmacological support is a real instrument to better deal with the symptoms and improve quality of life. Our web app is located in this context. Study design, size, duration This is a pilot study structured on one year follow-up of symptoms and quality of life of patients with confirmed endometriosis, giving them non-pharmacological suggestions and lifestyle changes useful to better face the pathology using a personalized web app. So far, we collected data from 50 patients. Preliminary results will be based on six months followup. The project started in December 2023 Participants/materials, setting, methods Participants are patients with diagnosis of endometriosis -ultrasound,mri and surgery - between 24-45 years old, using a personalized web app in which suggestions about non-pharmacological support/lifestyle changes, given by a multidisciplinary team, are contained. Indications received are based on pelvic symptoms - dysmenorrhea, dyspareunia, chronic pelvic pain- and main systemic symptoms - chronic fatigue syndrome, migraine, bowel implications/endobelly, urinary disfunctions. Quality of life before and after the indications received was measured using EHP-30 questionnaire. Main results and the role of chance A multidisciplinary team - specialists in gynaecology, infertility, urology, pelvic floor, nutrition, chronic pain, acupuncture, psychology, yoga/pilates, law- created a web app in which indications about non-pharmacological treatments/lifestyle changes to face endometriosis symptoms are contained. We divided the indications based on main pelvic symptoms of endometriosis - dysmenorrhea, dyspareunia, chronic pelvic pain- and main systemic symptoms - chronic fatigue syndrome, migraine, bowel implications/endobelly, urinary disfunctions. For each protocol, in validation by Italian ministry of health and structured in six months indications to be followed, we gave correct informations about the pathophysiology of endometriosis, related symptoms and how to recognize them, which specialist patients should consult, what kind of supplements are useful to reduce chronic inflammation in addition/without medical therapy, implications on fertility, nutrition indications, psycological support, physical activity, when surgery should be considered or where to refer to have a proper treatment. We also created the first online community formed by specialists and patients: patients web groups are useful to share experiences, but there is risk of misinformation. The presence of specialists in a web-based community with patients could also make the difference. So far, following our indications, 50 patients reported a significant improvement in quality of life Limitations, reasons for caution Limitation in patients selection is the difference in methods of diagnosis, not always performed by specialists. We do not find reasons for caution: non-pharmacological support exists. Correct informations in unique source raise awareness, the role of supplements, pelvic floor treatments, acupuncture, nutrition, psycological support are widely recognized in literature Wider implications of the findings We aim to properly support patients in management of endometriosis. With easily wide-spreading instruments such a web app created by specialists, supported by social media and online community, we also aim to reduce the diagnostic delay. Results so far indicate improvement in quality of life among the participants. Trial registration number not applicable
Fasolino et al. (Mon,) studied this question.