Patient experience surveys for endometriosis care: A scoping review

New research reveals major gaps in how we measure and understand the care experiences of people with endometriosis worldwide. Despite the significant and long-term impacts of the condition, few comprehensive tools exist to capture the voices of those navigating diagnosis, treatment, and ongoing management.

A new scoping review published in Sage Journals Women’s Health by Jenny King and Caroline Killpack, explores the global landscape of patient experience surveys for endometriosis care, which highlights an urgent need for more systematic, person centred measurement tools to drive improvements in care quality.

Why this matters

Endometriosis affects an estimated 1.5 million people in the UK, often causing debilitating symptoms such as chronic pain, fatigue, and infertility. Yet diagnosis can take up to eight years, and many people report fragmented, unsupportive, or dismissive care. Despite these known issues, there is no national survey in England specifically tracking patient experiences of endometriosis care.

Understanding patient experience is critical to quality improvement, yet the tools to do so remain limited and inconsistent.

Key findings

• Limited Coverage: Only one survey (the ENDOCARE Questionnaire) covered all eight domains of person centred care. Most others focused narrowly on specific aspects of the care journey, such as diagnosis or inpatient treatment.
• Inconsistent Design: Surveys varied significantly in length, mode of administration, and focus. Some included just two questions on experience, and several lacked clear development processes or patient input.
• Diagnostic Delays Underexamined: Although diagnostic delay is a critical issue in endometriosis care, most surveys failed to fully explore the complexity of patients’ diagnostic journeys.
• Global Imbalance: Studies came primarily from Europe and North
• America. No surveys from low- or middle-income countries were identified.
• Value of Support Networks: Many surveys relied on patient support groups and social media for distribution, reinforcing the importance of these networks—but also exposing the need for more systematic, inclusive approaches.

Implications for policy and practice

This research highlights the need for:

• Nationally funded patient experience surveys that reflect the full endometriosis care pathway.
• Development and use of tools that align with person centred care principles.
• Better representation of diverse patient voices, especially from underrepresented groups and regions.
• Enhanced focus on diagnostic experience and continuity of care.

By investing in high-quality measurement tools, policymakers and health services can better understand what’s working, and where improvements are urgently needed.