Abstract
Background: Endometriosis and adenomyosis are common health conditions, with symptoms including debilitating chronic pelvic pain, painful, heavy periods, fatigue and painful sex, urination and bowel movements. The average time to diagnosis is 7.5 years. People with these health conditions report that their symptoms impact their quality of life and mental health negatively. The delay in diagnosis, lack of treatment options and challenging encounters with healthcare professionals can also lead to symptoms of anxiety and depression. People living with endometriosis and adenomyosis often spend a lot of time, effort and money on self-managing their symptoms, intending to reduce the impact on their mental health and improve quality of life.Objective: Follow the Medical Research Council guidelines to develop and evaluate a complex psychological intervention tailored to people living with endometriosis and/or adenomyosis and improve their quality of life.
Design: The Phoenix Course was designed and evaluated by conducting three inter-related studies: a mixed-methods systematic review, a participatory action research needs assessment, and a feasibility randomised controlled trial.
Methods: A mixed-methods systematic review was conducted to identify and review the effectiveness of existing non-pharmacological, non-surgical interventions to improve the quality of life for people living with endometriosis and/or adenomyosis. There were 13 quantitative and 0 qualitative studies included in the review. The needs assessment was conducted using photovoice, a participatory action approach, with a feminist underpinning that uses photography to capture lived experience. Theory of Change was used to develop the intervention on the online Hope platform. This intervention (The Phoenix Course) was an 8-week online mindfulness-based intervention evaluated in a feasibility randomised controlled trial. There were 45 participants in the intervention group and 53 participants in the control group. There were two facilitators in the intervention group (one a mindfulness teacher and one a Hope for the Community facilitator). The primary outcomes were recruitment rates, retention and follow up rates and adherence rates. Secondary outcomes were quality of life (Endometriosis Health Profile-30) and mindfulness (Five-Facet Mindfulness Questionnaire) scores.
Results/Findings: The systematic review found a lack of high-quality research on non-pharmacological, non-surgical intervention for people with endometriosis and/or adenomyosis. It also found that mind-body interventions had the most potential for improving the quality of life for those living with these conditions. The photovoice needs assessment identified psychological needs, unmet needs and coping strategies of people living with endometriosis and/or adenomyosis. The most prominent coping strategy was self-management. This study provided in-depth data that captured the lived experience of people with these conditions. It also produced an output of a photo book. These data were used to tailor the intervention to the needs of this population. The feasibility randomised controlled trial found positive efficacy signals in the primary and secondary outcomes that warrant a further definitive trial.
Conclusion: The results of the three interrelated studies demonstrated a unique contribution, a psychological intervention developed to meet the needs of people living with these conditions that may improve quality of life. The needs assessment also led to an output that provides a compelling perspective of living with endometriosis and adenomyosis. Future research should focus on a further trial of the intervention but also on additional uses of photovoice, including if it can be considered to be a type of intervention as well as being a research method.
| Date of Award | Jan 2022 |
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| Original language | English |
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| Supervisor | Andy Turner (Supervisor), Elizabeth Sparkes (Supervisor) & Faith Martin (Supervisor) |