Long-term effect on physical, mental, and social wellbeing due to endometriosis

Results from the World Endometriosis Research Foundation’s EndoCost Quality of Life Study was published this month in Human Reproduction [1], showing long-term impact on work, relationships, and the sex-lives of women with endometriosis.

It is the first time an international multi-centre survey involving a large group of women with endometriosis in all phases of the disease has been conducted.

The aim of the study was to investigate the extent to which the management of endometriosis and the symptoms that persist after treatment affect quality of life in women with the disease.

The EndoCost Quality of Life Study is part of the WERF EndoCost Study, a cross-sectional study among 931 women with endometriosis treated in 12 tertiary care centres in 10 countries.

How the EndoCost Quality of Life Study was conducted

Women diagnosed with endometriosis, who had at least one contact related to endometriosis-associated symptoms during 2008 with a participating centre, were enrolled into the study (mean time between diagnosis and the study was 5.5 years).

Participating women were asked to complete validated questionnaires, in their own language, assessing the effect of endometriosis on education, work and social wellbeing, endometriosis-associated symptoms, and health-related quality of life.

Key findings from the WERF EndoCost Quality of Life Study

During a lifetime perspective, endometriosis had a significant impact on key aspects of daily life:

  • Endometriosis affected work in 51% of the investigated women, and
  • 50% of the women stated that endometriosis had a profound impact on their relationships

Despite tertiary care management of their endometriosis, the majority of women still suffered from endometriosis symptoms:

  • 59% continued to have painful periods (dysmenorrhoea)
  • 56% reported painful intercourse (dyspareunia), and
  • 60% of women reported chronic pelvic pain.

Quality of life was decreased in all eight dimensions of the SF-36v2 (an instrument to measure health related quality of life) compared with norm-based scores derived from a general US population.

Painful sex (dyspareunia), chronic pain, and the number of co-morbidities had an independent negative effect on both the physical and mental components of quality of life.

Other factors that correlated with these women’s quality of life were affected work (negative) and having a partner present for support (positive).

A patient-centred approach to endometriosis is needed

Dr Aisha De Graaff, Maastricht University Hospital, The Netherlands

Lead author, Dr Aisha De Graaff, commented on the work:

This international multi-centre survey represents a large group of women with endometriosis in all phases of the disease.

Women still suffer from frequent symptoms, despite tertiary care management, in particular chronic pain and dyspareunia. As a result their quality of life is significantly decreased.

A patient-centred approach with extensive collaboration across disciplines, such as pain specialists, psychologists, sexologists, and social workers, would be a valuable strategy to improve the long-term care of women with endometriosis.

Reference
  1. De Graaff, et al. The significant effect of endometriosis on physical, mental and social wellbeing: results from an international cross-sectional survey. Hum Reprod 2013;28(10):2677-85
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