(1356) Quality of Life in Endometriosis Patients Prior to Starting a Medication Through a Specialty Pharmacy

Objectives: Endometriosis (EM) is a chronic and progressive disease with no cure and only symptomatic treatment. This disease affects roughly 10% of reproductive age females worldwide and is characterized by pain and infertility which can negatively impact a patient’s health-related quality of life (QOL). Due to this effect on patients' health-related QOL there are many studies that look at this measure, however, there aren't any studies looking at quality of life for women who are entering into treatment by a specialty pharmacy. It is common for patients with EM to be symptomatic for 5 to 10 years before a diagnosis is made. As a result, many EM patients have an extensive medical journey that spans multiple years, involving multiple healthcare professionals and trial and error to achieve diagnosis and treatment. Being symptomatic while waiting for a diagnosis means patients are living in pain and discomfort, which can greatly impact their QOL. Although there is some available information about the journey EM patients must go through to get care, these don’t include their medication journey. Due to these gaps in data, our primary objective for this study is to evaluate health-related quality of life, using the Center for Disease Control’s health-related quality of life survey, (CDC HRQOL-4), in EM patients starting a medication through a national specialty pharmacy and secondarily to investigate EM patients’ medication history to understand patients’ treatment journeys.

Methods: This is a single-center prospective survey study to assess patients' quality of life before starting an endometriosis medication with a national specialty pharmacy (SP). The patient population will include those 18 years or older, who are new to the SP, are starting on a medication for endometriosis, and have opted to receive text messages from the pharmacy. A list of patients who are new to the SP and are starting a medication for endometriosis will be generated weekly. A text will be sent out to eligible patients via text message containing a link to the CDC HRQOL-4. Additional data that will be collected include patient demographics and previous pharmacy fill history. The primary outcome will be measured through aggregated assessment of baseline CDC HRQOL-4 score. The CDC HRQOL-4 is a valid tool that assesses perceived physical and mental well-being and is disease agnostic. It is a standard survey used by the SP across the disease states they treat to assess patients’ general QOL and inform Quality Improvement initiatives. Data will be collected over a minimum of a 2-month time period to achieve sufficient patient data for analysis. Continuous measures will be reported as means (SD or median (IQR)). Categorical measures will be reported as counts and percentages. Additionally, if patients previously used an affiliated retail pharmacy, their past medication history will be analyzed to look at trends of EM patients' medication use prior to entering care of the SP.

Results: Data collection and reporting on findings of the study will be done, pending IRB approval

Conclusions: The findings will give insight to EM patients’ QOL upon entering treatment by SP and, when applicable, what medications a patient was on before starting a specialty medication. After analyzing the findings, they may help implement a quality improvement project for this patient population within SP.