Improving Endometriosis Care: Diagnosis, Management, and Surgical Practices

A new study aimed to identify priority areas for improvement in the treatment pathway of patients with endometriosis. Endometriosis is a condition where tissue similar to the lining of the uterus grows outside the uterine cavity. This tissue can bleed in response to hormonal changes, causing pain and scarring in the pelvic area. A significant issue with endometriosis is the delay in diagnosis, which can lead to prolonged suffering, poor health, and fertility issues. Delays are often due to the misconception that pelvic pain and heavy menstrual bleeding are normal, as well as a lack of awareness among healthcare professionals about the wide range of symptoms that can accompany the condition.

Current Approach to Endometriosis Treatment

Unlike chronic conditions such as diabetes or inflammatory bowel disease, endometriosis is often treated as isolated episodes of acute care rather than a continuous condition. This fragmented approach needs to change to establish appropriate care pathways, including holistic and medical management, discharge planning, and follow-up.

Study Overview

Objective of the Study

This study reviewed the pathway and quality of care for patients aged 18 and over diagnosed with endometriosis. Data were collected from clinician and organizational questionnaires, patient surveys, and case notes from February 1, 2018, to July 31, 2020.

Study Details

• Sampling Period: February 1, 2018, to July 31, 2020
• Data Sources: 623 clinician questionnaires, 167 organizational questionnaires, 309 sets of case notes, 941 patient surveys, and 137 clinician surveys

Key Findings

1. Delayed Diagnosis and Initial Referral

Endometriosis is a chronic condition that lacks a well-defined care pathway. Delays in diagnosis are common; 36 out of 136 patients experienced delays in referral to gynecology, impacting the quality of care for 25 of these patients. Recurrence or persistence of symptoms after laparoscopy was noted in 52.1% of patients, with delays in follow-up care for 25.8% of these cases.

2. Recognizing Symptoms for Timely Management

The signs and symptoms of endometriosis, such as painful, irregular, or heavy periods and painful intercourse, need early recognition. These symptoms were present in 94% of the patients reviewed. However, symptoms also included bowel issues, urinary symptoms, and infertility, which were often overlooked. Multiple GP visits were common before any investigations or treatments were initiated.

3. Impact on Quality of Life

The study found that the quality of life for endometriosis patients was often not adequately addressed. Many patients did not receive referrals to supportive services, with 22.7% missing out on best practices due to this oversight. Additionally, 44.6% of patients reported that the impact of symptoms on their quality of life was not assessed.

4. Need for Multidisciplinary Care

Holistic, multidisciplinary care is essential for comprehensive endometriosis treatment. Only 43.7% of hospitals reported holding multidisciplinary team (MDT) meetings for endometriosis patients. Reviewers found that only 11.2% of patients were discussed in MDT meetings, indicating a need for better coordination of care.

Study Aim and Objectives

Aim: To review and identify remediable factors in the quality of care for patients aged 18 and over with a surgical diagnosis of endometriosis.

Objectives:

• Explore clinical and organizational structures for endometriosis care.
• Focus on triage, endometriosis specialist centers, and care pathways.
• Evaluate communication between providers and information/support for patients.
• Assess staffing, surgical services, imaging services, holistic care, and MDT provision.
• Review discharge and follow-up procedures.

Study Methodology

• Population: Patients aged 18 or older with a primary surgical diagnosis of endometriosis.
• Exclusion: Patients miscoded or found not to have endometriosis.
• Participation: Data from NHS and independent hospitals in England, Wales, and Northern Ireland.
• Questionnaires: Clinician, organizational, and GP questionnaires collected comprehensive data. Case notes were reviewed by a multidisciplinary team.

Training and Education

A survey revealed that 45.3% of 137 clinicians received additional endometriosis training in the past five years, mostly not workplace-provided. In 76 of 167 hospitals, endometriosis care training was available, primarily for gynecologists and endometriosis nurse specialists. Awareness of endometriosis and its symptoms needs broader dissemination across all hospital specialties.

Holistic Care

Comprehensive care, including managing comorbidities and improving quality of life, is crucial for endometriosis patients, particularly those seeking to conceive. Holistic care includes referrals to dietary, exercise, sleep hygiene, and stress management services. However, referral rates to mental health services (1.6%) and pain clinics (8.0%) are low, despite high incidences of pain and mental health issues among these patients. Only 8.9% of hospitals routinely screen for mental health issues during clinic appointments.

Quality of Life Assessments and PROMs

BSGE centers are required to use patient-reported outcome measures (PROMs) to evaluate symptoms and quality of life. However, only 2.9% of patients were referred to physiotherapy, and almost half of the surveyed patients were never asked about the impact of symptoms on their quality of life. Routine holistic assessments, including psychosocial histories, could significantly benefit patient care.

Fertility

Endometriosis is associated with fertility issues, although not all affected women are infertile. Close collaboration with fertility specialists is essential. The case reviews showed that fertility services often operate separately from endometriosis services, leading to disjointed care. Approximately 30.4% of patients had fertility concerns, with 65 out of 94 being referred to fertility services. Fertility discussions before endometriosis surgery occurred in 36.7% of cases.

Multidisciplinary Teams

Effective management of endometriosis requires robust multidisciplinary teamwork. BSGE centers are mandated to hold formal MDT meetings for severe endometriosis cases. However, less than half of the hospitals held regular MDT meetings, and only a small percentage of patients were discussed in these meetings. Superficial endometriosis, which can cause significant symptoms, also benefits from MDT support.

Common Symptoms and Initial Management

Pelvic pain is the most frequent symptom of endometriosis. When a GP suspects endometriosis, they should consider the patient’s specific circumstances, including symptoms and priorities such as pregnancy planning and daily living, before prescribing medication. According to NICE guidelines, initial pain management should involve paracetamol or NSAIDs, either alone or with hormonal treatment, before referring to a gynecology specialist.

Hormonal and Other Medical Treatments

Medical treatment can begin even before laparoscopic confirmation. Hormonal treatments such as progestogens, combined oral contraceptives, GnRH agonists and antagonists, and aromatase inhibitors are known to reduce pain in endometriosis patients. Neuromodulators like antidepressants, SSRIs, or anticonvulsants, although used in primary care, have not shown superior effectiveness and can have dose-limiting side effects.

Prescription Practices and Efficacy

In this study, 47 out of 90 patients referred to a gynecologist had medications prescribed by their GP. Hormonal treatment was the most common therapy. Of those prescribed hormonal treatments, only about half reported symptom improvement initially, and follow-up was limited. A significant number of patients experienced no improvement and did not receive further investigation by their GP.

Pain Management

Endometriosis-related pain includes non-menstrual pelvic pain, painful intercourse, and pain during urination or defecation. Pain medication, often prescribed by GPs or gynecologists, primarily involves NSAIDs. However, only a small percentage of patients saw a pain medicine specialist, despite the prevalence of pain-related comorbidities. Antidepressants were also prescribed but lacked strong evidence for efficacy and safety.

Side Effects and Medication Reviews

Hormonal treatments, though effective in reducing pain, can have side effects. GnRH agonists, for example, can cause menopausal symptoms, hot flushes, and mood swings. In this study, side effects led to discontinuation of hormonal treatment in a significant number of patients. Medication reviews, crucial for managing these treatments, were often inadequate, with many patients not receiving regular reviews or having their medication plans documented properly.

Laparoscopy for Diagnosis and Treatment

Laparoscopy, a keyhole surgery under general anesthesia, is considered the gold standard for diagnosing endometriosis, particularly for superficial endometriosis. While imaging techniques can identify some types of endometriosis, they are less reliable for superficial lesions, which require laparoscopic identification and histological confirmation.

Surgical Procedures and Outcomes

In this study, most patients had their endometriosis diagnosed via surgical laparoscopy. Excision of lesions is preferred over ablation for reducing pain, although evidence shows no significant difference in outcomes for minimal and mild endometriosis. Laparoscopic ablation was the most common procedure performed. However, complications, though rare, did occur, and delays in surgery were reported, often due to organizational issues.

Consent and Documentation

Adequate patient consent, involving detailed discussion of risks and benefits, is essential but was found lacking in some cases. Incomplete operation records and insufficient postoperative instructions were also noted. Ensuring accurate documentation and senior supervision during surgeries is critical.

Long-term Management and Follow-up

Endometriosis requires ongoing management with medication and surgery. After laparoscopy, many patients did not have a management plan for their symptoms. Follow-up was often inadequate, with many patients needing to restart the referral process for recurring symptoms. Timely and planned follow-up appointments, as stipulated in national guidelines, were not always provided.

Patient Access and Recurrence of Symptoms

Limited direct access to healthcare professionals and inadequate follow-up care were significant issues. Many patients experienced recurrence of symptoms and had to go through GPs for re-referrals, causing delays in treatment. Hospitals offering patient-initiated follow-up showed some improvement in access to care.

Governance and Data Collection

Recording and analyzing data on surgical outcomes is crucial for improving care. However, not all hospitals collected comprehensive data on surgical complications or individual surgeon performance, highlighting a need for better governance and data management.

Conclusion

Effective management of endometriosis involves a combination of medical and surgical treatments, regular medication reviews, adequate patient consent, and thorough follow-up care. Improvements are needed in documentation, patient communication, and access to specialist care to ensure better outcomes for patients with this chronic condition.

For more detailed information, please visit: Endometriosis_A Long and Painful Road