None listed
Conditions
Brief summary
Endometriosis is a gynaecological syndrome that is associated with substantial pelvic pain and dysmenorrhea and is defined as the presence of endometrial-like tissue outside the uterus. This condition affects between 1 and 39% of women (including people assigned female at birth) during their reproductive years, and is associated with poor quality of life and sleep, anxiety, and depression. Endometriosis can directly cost each person between US$1459 and US$20,239 and indirectly cost as high as US$14,079 Diagnosis is often dependent on surgical findings, with a substantial number of people undergoing laparoscopic surgery to obtain a definitive diagnosis. To our knowledge, no studies exist that specifically compare pain, quality of life, self efficacy, and anxiety outcomes beyond the hospital stay, between people undergoing laporoscopic surgery for endometriosis that have and have not undertaken prehabilitation or rehabilitation programs. Thus, it is not known whether prehabilitation/rehabilitation programs can enhance recovery from endometrial laparoscopic surgery This study aims to assess the feasibility and acceptability of a holistic digital prehabilitation and rehabilitation program tailored to people undergoing surgery for suspected endometriosis, called the Matilda program( www.matilda.health). This aims to provide data for the planning of a larger scale clinical controlled trial. In addition, this study aims to determine whether any improvements to the intervention can be made. The methods include the use of a mixed method convergent feasibility study, delivered to participants undergoing laparoscopic surgery via three online surveys (one at baseline, one immediately prior to surgery and one 4 weeks after surgery). One group will be those that undergo the Matilda program (4 weeks of prehabilitation prior to surgery and 4 weeks of post surgery rehabilitation). The other group will be those that do not undergo the Matilda program. In addition, gynaecologists will also be invited to fill out a survey and provide number of participants that have been provided with recruitment materials. The outcomes that will be examined include pain, anxiety, rating of most troublesome symptoms, quality of life, self efficacy, surgical anxiety. In addition acceptability variables from a prior survey developed by Sekhon et al will also be examined, such as affective attitude, burden, ethicality, perceived effectiveness, intervention coherence, patient self efficacy, opportunity costs and general acceptability. In addition domains from Bowen's framework for acceptability and feasibility will also be examined.
Interventions
Participants will voluntarily enrol into a a holistic digital prehabilitation and rehabilitation program tailored to people undergoing surgery for suspected endometriosis, called the Matilda program (www.matilda.health). The resources are housed within the Matilda App and have all been created for the Matilda program. The Matilda program includes 1. Prehabilitation (4 weeks pre-surgery): a. Self-guided yoga and Pilates sessions (30 minutes, 2x/week). b. Mindfulness and relaxation techniques (self-guided meditations). This includes ~5-20 mins of mindfulness/relaxation techniques provided per week, with the frequency self determined by the participant c. Educational modules delivered via short video lectures (with subtitles) and accompanying text documents that provide information on i. Pelvic floor anatomy and how to best use the pelvic floor for the participant's needs ii. Optimal diet iii. Understanding the pain system, iv. Stress management, v. Physical activity/movement, vi. Pre-anaesthetic appointment navigation, vii. Logistics regarding hospital stay for surgery, viii. What support systems are available and how to best navigate them ix. Gas pain – what it is and how to manage it, x. Psychological Health management: Navigating a diagnosis (or no diagnosis) d. Lifestyle tracking (movement, nutrition, mental wellbeing, sleep), completed. These will be tracked within the Matilda App (ie the same App that the educational content and mindfulness/relaxation techniques are housed on). e. Lived experience pre-recorded interviews from people who have previously had surgery for their endometriosis. These interview videos will be housed within the Matilda App f. Weekly clinician-led video conference group calls, delivered as weekly online calls with up to 50 participants. g. Peer support via a community forum with forum messages moderated by a member of the research team and by a community lead and filters have been set up to flag/ban certain words (i.e. profanities or racist comments This is available only to those within the program, and is a separate community forum platform (Slack) h. Weekly check-ins via email and SMS to encourage engagement. 2. Rehabilitation (4 weeks post-surgery): a. Progressive Yoga and Pilates. These sessions are lighter and easier than the prehabilitation classes in order to accommodate the post-surgery period. The participants are encouraged within the Matilda App to determine their own level of participation according to what works for their body, starting with less and then building slowly. b. Mindfulness and relaxation techniques. As per the prehabilitation sessions there are 5 to 20 minutes duration and the frequency determined by participant preference. c. Educational modules delivered via short video lectures (with subtitles) and accompanying text documents that provide information on i. What is endometriosis, ii. Return to movement, iii. Healing foods, iv. Wound care, v. Returning to sex, vi. Maintaining long term changes, d. Weekly clinician-led video conference group calls, delivered as weekly online calls with up to 50 participants. e. Peer support via a community forum with forum messages moderated by a member of the research team and by a community lead and filters have been set up to flag/ban certain words (i.e. profanities or racist comments This is available only to those within the program, and is a separate community forum platform (Slack). f. Weekly check-ins via email and SMS to encourage engagement.
Sponsors
Study design
Eligibility
Inclusion criteria
The inclusion criteria are those scheduled for laparoscopic surgery for suspected endometriosis
Exclusion criteria
People who do not have access to a smartphone, electronic device or computer with internet connectivity. The exclusion criteria include people who are non-English speakers (due to language limitations in the program) and those aged under 18.