Delays in the diagnosis of endometriosis: socio-psychological determinants of symptom normalisation (END-DELAY)

Endometriosis is a common and highly debilitating chronic condition that significantly impairs the quality of life of affected women*. In Germany, diagnosis is often delayed, even though an early diagnosis can have a decisive impact on the course of the disease, quality of life and potential use of painkillers.

Aim of the research project

The END-DELAY project aims to reduce diagnostic delays in endometriosis and to find solutions for better patient-centred care. To this end, individual, social and structural reasons for diagnostic delays will be systematically investigated. In an initial online survey, 1,500 women aged between 16 and 40 who have symptoms but no diagnosis will be surveyed. The aim is to investigate whether receiving feedback on their symptoms makes these women more likely to visit a doctor’s surgery and seek support. After approximately six months and approximately twelve months, the women will be asked about their efforts to seek a diagnosis in the meantime and the outcomes of these efforts. A further online survey involving 1,200 people will be aimed at the general population. The influence of the social environment plays a major role in determining whether pain is trivialised and the subject is treated as a taboo, or whether support is provided, such as offers of counselling, help with finding medical information and accompaniment to doctor’s appointments. Another reason for the delay may lie with doctors. In interviews, gynaecologists and GPs are asked about how they deal with endometriosis in their practice. Based on this, specialised training materials are being developed jointly. The aim is for doctors to recognise the symptoms earlier and not to dismiss them as normal ailments.

Prospects for clinical practice

The researchers intend to present their findings annually to an expert advisory board comprising medical professionals, journalists and patient organisations. The insights from the END-DELAY project are intended to help improve the standard of care for women with endometriosis. The aim is to formulate recommendations on how to support and better prepare those affected in their quest for a diagnosis. Furthermore, the results are also intended to provide direct support to women at various levels. This is because the development of evidence-based training materials for primary care in general practice and gynaecology helps to raise practitioners’ awareness of possible diagnostic and treatment options for endometriosis. The health messages developed as part of the project to promote social support and reduce stigmatisation could then be utilised in future initiatives.