To examine the relationship between endometriosis-related symptom burden and health-related quality of life (HRQoL) of participants in the NECST Registry.
Design:
Retrospective cohort study using clinical, health and longitudinal data collected in the NECST Registry.
Setting:
Participants were recruited from hospitals, specialist private clinics and social media.
Patients or Participants:
Women, trans, gender-diverse people, and those presumed female at birth, aged 18+ years, diagnosed or experiencing endometriosis-related symptoms or a related condition (e.g., adenomyosis).
Interventions:
N/A
Measurements and Main Results:
Medical history was collected using the World Endometriosis Research Foundation (WERF) Endometriosis Phenome and Biobanking Harmonisation Project (ePHect) clinical questionnaire. QoL data, using the EQ-5D-5L and Endometriosis Health Profile (EHP)-30 validated tools, was collected at baseline, 6-, 12- and 24-months follow up.
From 1804 participants, early onset of endometriosis-related symptoms is common with an average of 17 years (range 8–39 years). The most common presenting symptom was dysmenorrhoea (42%), and hormonal therapy was used by 45% of participants to manage symptoms at entry to the registry.
The self-reported and overall HRQoL did not differ over the 2 years of follow-up (p=0.089 and p=0.641, respectively). However, compared to the Australian general population (M=0.9, SD=0.14)1, HRQoL was persistently poorer, despite improvements across all domains and time points with time.
Participants who were older, had later onset of menarche and/or endometriosis-related symptoms had better HRQoL. Longer menstruation, higher pelvic pain scores and more comorbid diagnoses is linked to poorer HRQoL.
Conclusion:
The NECST Registry is the first Australian endometriosis registry to collect longitudinal HRQoL data. Our study shows that those diagnosed with endometriosis and using adjunct hormonal-therapy, still experience a persistently poorer HRQoL compared to their peers.
Additional analyses are being performed to determine whether this trend persists at 3-years follow-up, the impact of public vs private care and those who have had surgery for endometriosis on HRQoL.
Shyamsunder, AM*. Gynaecological Research and Clinical Evaluation (GRACE) Unit, Royal Hospital for Women and University of New South Wales, Sydney, NSW, Australia, Ng, C. Gynaecological Research and Clinical Evaluation Unit (GRACE), National Endometriosis Clinical and Scientific Trials (NECST) Network, Royal Hospital for Women and University of New South Wales, Sydney, NSW, Australia, Niekerk, LV. National Endometriosis Clinical and Scientific Trials (NECST) Network, University of New South Wales, Sydney, NSW, Australia, Nesbitt-Hawes, E. Gynaecological Research and Clinical Evaluation Unit (GRACE), National Endometriosis Clinical and Scientific Trials (NECST) Network, Royal Hospital for Women and University and New South Wales, Sydney, NSW, Australia, Mishra, GD. School of Public Health, University of Queensland, Brisbane, QLD, Australia, Montgomery, G. Institute for Molecular Bioscience, University of Queensland, Brisbane, QLD, Australia, Abbott, J. Gynaecological Research and Clinical Evaluation (GRACE) Unit, National Endometriosis Clinical and Scientific Trials (NECST) Network, Royal Hospital for Women and University of New South Wales, Sydney, NSW, Australia
