Endometriosis, a chronic and often painful condition affecting millions of women worldwide, presents unique challenges in both diagnosis and management. While conventional methods of tracking symptoms, particularly pain, have been the norm, they don’t take into account the all-encompassing nature of this incurable, lifelong condition.
Enter the Oxford-developed Endometriosis Health Profile (EHP). This is a multifaceted tool designed to measure not just the physical symptoms of endometriosis but also its broader impact on mental, emotional, and social well-being. This is different than most measures because they are looking at the key areas that can showcase the impact of endometriosis on someone’s overall quality of life.
At ELANZA, we have adapted this scoring system so that our members can best understand the various ways in which their endometriosis impacts them as well as what they can do - using tools and therapies available to them both in and outside of the app - in order to make truly meaningful adjustments that will transform the experience of living with endo.
What is the Oxford Endometriosis Health Profile?
The Oxford Endometriosis Health Profile (EHP) is a comprehensive tool designed to measure the overall quality of life of individuals who are dealing with the specific challenges of endometriosis. Unlike traditional measures that focus on a single aspect of the condition - most often pain - this evaluates several dimensions:
Physical Health: Assessing symptoms, physical limitations, and general health conditions.
Psychological Well-being: Evaluating mood, stress levels, and emotional health.
Social Interaction: Looking at relationships with friends and family, social activities, and feelings of loneliness or support.
Daily Functioning and Activities: Measuring the ability to perform everyday tasks, work-related activities, and hobbies.
Pain and Discomfort: While this is a component, it's integrated into a broader context of overall health and well-being.
The EHP was originally developed to address the need for a more holistic and patient-centered approach in healthcare, especially for the management of chronic conditions like endometriosis. It reflects a paradigm shift in healthcare towards considering the full spectrum of a patient's experience and well-being.
Why this tracking method was created for endometriosis?
Before the EHP scoring system was created, the primary methods used for assessing the severity of endometriosis symptoms were more narrowly focused, often emphasizing quantifiable physical symptoms, particularly pain. But, if you’ve been suffering from endometriosis, you can probably attest to the fact that a 1-10 pain scale at a specific moment in time in no way reflects the actual experience of endo. Some days you can’t walk from the pain, some days you are riddled with anxiety in anticipation of your period. Often your relationships, your job, and your ability to do simple tasks seem completely unattainable.
Thankfully the researchers at Oxford recognized that the oversimplified pain measurement tools like the Visual Analogue Scale (VAS) or the Numeric Rating Scale (NRS) were not fully encompassing the full impact endo has on people's lives. So, they set out to create a new system that would help provide:
A more holistic understanding of endo symptoms: Traditional health assessments often focus narrowly on physical symptoms or disease markers. The Oxford EHP Score was developed to address this limitation by incorporating a broader understanding of health, one that includes psychological, social, and functional aspects of life.
A patient-centered approach: There was a growing need to shift from a purely clinical perspective of health to one that considers the patient's subjective experience. The Oxford EHP Score was designed to capture how patients feel about their health and daily life, providing a more patient-centered approach to healthcare.
A tool specifically for chronic symptom management: For chronic conditions like endometriosis where there is no cure, it became evident that successful management involves more than controlling symptoms. The tool was developed to aid in the comprehensive management of such conditions, taking into account the various ways they impact a patient's life.
A better tool for patients to communicate with their clinical team: By providing a broader view of the patient's condition, the Oxford EHP Score allowed for more tailored and effective treatment plans. This holistic data helped in addressing aspects beyond physical symptoms, such as mental health support and social interventions.
What are the benefits of tracking your progress against the EHP over time?
When it comes to endo, the goal is progress, not perfection. Without a cure, you can almost inevitably expect that your symptoms will change or get worse, or perhaps they will be fine for a while and then come back. So, the best thing you can do to gain back a sense of control is to carve out areas of your life that can contribute to not just better symptom management but also, a means to manage what could be the underlying reasons your endo could be impacting you the most.
Here are some of the other reasons that using the EHP is more helpful than typical symptom trackers:
You may not understand the full impact endo is having on your entire life
Encompassing Physical, Mental, and Social Aspects: The Oxford EHP Score goes beyond the traditional focus on physical symptoms, incorporating a holistic view of health. It recognizes that endometriosis is not just a condition of physical discomfort but one that profoundly affects mental health and social interactions. By evaluating mental well-being, such as mood and stress levels, and social factors like relationship quality and social activity, the Oxford EHP Score paints a complete picture of how endometriosis impacts life in its entirety.
The Oxford EHP Score brings attention to often-overlooked aspects like fatigue, emotional distress, and social isolation. Acknowledging these symptoms is crucial in understanding the full scope of the condition and in developing more effective management strategies.
"I used to use just a period tracker but I started using the ELANZA tracker with the EHP score and it has opened my eyes to how interconnected my symptoms are. I used to focus solely on pain management, but now I understand how endometriosis affects my mood, energy levels, and even my relationships. This comprehensive tracking has helped me make lifestyle changes that have significantly improved
my quality of life. It's not just about managing pain anymore; it's about managing my life as a whole."
It can help you understand your personal triggers and responses
The EHP Score can play a crucial role in helping you understand your personal triggers and responses, particularly by shedding light on the unique pathways of pain associated with the condition. Endometriosis pain can be complex, often involving different types such as nociceptive (caused by tissue damage or inflammation) and neuropathic (caused by nerve damage or irritation).
Using the ELANZA app, you can match up different therapies or tools you’ve tried alongside how they ma
ke you feel. For example, you may find that a gluten-free diet, doesn’t provide immediate pain relief but it does reduce your feeling of fatigue - an often overlooked but really difficult symptom of living with endo.
With time, you can better understand your triggers, whether they are certain activities, stressors, or emotional states, allowing you to develop personalized strategies to mitigate these effects, leading to better symptom management and an improved overall quality of life.
It can improve your communication with your doctor
Detailed EHP information provides healthcare providers with a deeper understanding of how endometriosis affects their patients' lives. This comprehensive data enables clinicians to tailor treatment plans more effectively, addressing not only pain but also other areas impacted by the condition. It facilitates a more nuanced approach to treatment, considering factors like emotional support, social life adjustments, and mental health interventions.
have shared the tracking information from the app in doctor’s appointments, which has led to more productive discussions. For example, most conversations about surgery only occur once someone expresses an interest in getting pregnant. But what if you have pain that is impacting your relationships, your job, and your mental health? This aids in a more productive conversation than if you were to just look at a pain scale.
It can bring a sense of control and better self-awareness
The process of tracking and reflecting on various aspects of your health empowers you to take an active role in the management of your endometriosis. This self-management approach leads to a sense of control and agency over the condition, rather than feeling at the mercy of its symptoms. This is especially relevant because of the general limitations of clinical care.
"I always thought that if I could just get the pain under control, everything else would fall into place. Using the ELANZA tracker showed me that there's so much more to managing endometriosis. It's helped me track how I'm doing emotionally and socially, not just physically. This larger view of the impact endo is having on me has changed the way I approach my entire journey.” ELANZA Beta Member
The takeaway is that the use of the Oxford EHP Score in managing endometriosis offers a range of benefits, from providing a more comprehensive understanding of the condition to enhancing communication with healthcare providers and empowering patients in their care. This approach fosters a deeper awareness of the multifaceted impact of endometriosis and supports more targeted and effective management strategies.