Symptom Flares in Endometriosis: Burden, Self-Management and Barriers to Care in a Cross-Sectional Survey
Lydia Coxon1, Emma Evans1, Francine Toye2
1Nuffield Department of Women's & Reproductive Health, University of Oxford, Oxford, UK.
Objective:
To explore the characteristics of symptom flares, individual experiences and behaviours during flares in people with endometriosis.
Design:
Online questionnaire shared on patient support sites.
Setting:
People with a confirmed or working diagnosis of endometriosis (a working diagnosis is given by clinicians based on symptoms/history; individuals may or may not go on to have further imaging/surgical investigations).
Population Or Sample:
A total of 236 responses were collected.
Methods:
Descriptive and comparative analysis of quantitative data, and thematic analysis of qualitative data.
Main Outcome Measures:
The characteristics, triggers, treatments and strategies for symptom flares together with perceived predictability and self-efficacy in relation to flares, healthcare access during flare, advice received and overall endometriosis-related quality-of-life.
Results:
We identified a wide variation in the characteristics and treatments/strategies. 31.2% stated that they were 'not at all' confident coping with long flares, and around 1/3 of participants found flares 'not at all' predictable. Only 35.3% reported receiving advice from a healthcare provider about flares. We developed 5 themes to suggest why participants did not contact healthcare providers: 'what can they do?', 'I can cope, it will end', 'broken healthcare system', 'perceived dismissal and gaslighting' and 'symptoms stop me'.
Conclusions:
Flares have a large impact on quality-of-life and are clinically very important. Individuals do not commonly receive advice from healthcare providers or contact healthcare providers during a flare. More research, in a more diverse sample, is needed to identify mechanisms underlying flares, as well as developing and disseminating management tools to prevent, manage and treat flares.
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