Capturing Health-Related Quality of Life of Women Living with Endometriosis
12th October 2023
Endometriosis is a chronic condition that affects millions of women worldwide, characterised by the presence of endometrial-like tissue outside the uterus, causing pain, infertility, and a host of other debilitating symptoms. Managing endometriosis often necessitates a lifetime of surgical and / or medical interventions, significantly impacting a patient’s quality of life. In this context, the Endometriosis Health Profile (EHP) emerges as a valuable assessment tool that can not only provide a patient a voice in their healthcare but also help clinicians better understand the multifaceted nature of this condition, leading to more effective treatment strategies and improved long-term outcomes.
Developed at the Nuffield Department of Population Health, Oxford University in 2001, the EHP is compliant with the US Food and Drug Administration’s (FDA) guidelines for developing Patient Reported Outcome Measures (PROMs) and has been used globally in routine clinical practice and research studies across the healthcare space to benchmark various interventions associated with managing endometriosis. Furthermore, the EHP has facilitated pharmaceutical companies in collecting data to support drug label claims.
The core instrument comprises of 30-items and asks people to rate, on a five-point Likert scale, their feelings, and experiences toward the following symptom-related aspects:
- Pain;
- Control and feelings of powerlessness;
- Social support;
- Emotional well-being;
- and Self-image.
In addition to the core 30-item version, the EHP is available in other formats to suit users’ study requirements, including a short-form version and six supplementary modules (optional) that can be employed in conjunction with the core instrument, focusing on aspects of health status that may not impact every individual with endometriosis. These supplementary modules encompass: Work, Relationships with child/children, Sexual intercourse and functioning, Feelings about medical profession, Feelings about treatment, and Feelings regarding infertility. Healthcare professionals can select these modules, individually or in combination, to assess specific dimensions of Health-Related Quality of Life (HRQoL) pertinent to their research or clinical practice and tailored to the patient’s needs.
With 56 certified translations available to date, the EHP has been adopted in studies across the globe, with some countries having more than one translation covering different speaking populations. The Clinical Outcomes team have also granted over 470 licence agreements for the EHP, enabling hundreds of thousands of women living with endometriosis to report on their health-related quality of life.
If you have any questions related to the EHP or would like to find out more about how you can obtain a licence to use the PROM, you can contact the Clinical Outcomes team via healthoutcomes@innovation.ox.ac.uk or visit The Endometriosis Health Profile (ox.ac.uk).
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