Page 160 - Diagnostic delay of endometriosis
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share experiences and comfort. Besides the supporting and advising of individual patients, they become increasingly involved in the public, scientific and political domain as well. As a board member of the patient interest group for endometriosis, I would put a large amount of effort in increasing awareness. I would reach out to women, who have not been diagnosed with endometriosis, to make sure they are well informed about normal menstruation and when to seek medical help. Off course, this cannot be done alone and collaboration is very important. I would join efforts with a variety of health care providers, including public health services, general practitioners, paediatricians, and gynaecologists, to create an education program with age specific and comprehensive information to be enrolled at schools, sports clubs and social services. Relevant information can be concentrated on a dynamic online platform, which additionally provides an opportunity to interact with experts in the field. In my patient advocacy role, I would like to be involved in official bodies advising on health policy and scientific research strategies. The patient interest group could participate in raising funds for research or recruiting patients for clinical trials, and joint efforts of similar groups across countries can help set up international initiatives in this area.
If I were a policy maker
As a policy maker, I want to focus on a balance between good quality health care and the economic burden to society. Endometriosis is a chronic illness with an associated economic burden comparable to diabetes or Crohn’s disease.27 A large proportion of the costs result from absenteeism of work and loss of productivity. One could speculate that the real costs might even be higher, since approximately one third of menstruating women in the general population is not able to perform all their usual activities during their period and this probably includes women with endometriosis which have not yet been diagnosed or received a false diagnosis.10 The medical costs of endometriosis rise with increasing disease severity or infertility, suggesting that the appropriate management started after a timely diagnosis may reduce these costs.27 Pragmatic treatment of women with menstrual symptoms affecting daily life with low cost, safe and effective medical treatment may reduce the need for advanced and expensive treatments and improve quality of life. I would encourage partnership between the patient interest group, medical community, media and other stakeholders to initiate strategies to promote awareness, support initiatives like the development of a new clinical guideline and decision aid, and maintain endometriosis on the research agenda.
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