Published on
Updated
Reading 2 mins.
The Community of Patients for Research of the AP-HP (ComPaRe) unveiled this Wednesday new areas for improvement to improve the care of patients suffering from endometriosis.
Endometriosis affects approximately 10% of women of childbearing age in France, ie 1.5 to 2.5 million women. Despite this large figure, the time between the appearance of the first symptoms and the diagnosis of the disease is increased to 7 years. In this context, ComPaRe collected the ideas of patients suffering from endometriosis with a view to improving their care.
Few therapeutic options exist
For this survey, 1000 patients from the ComPaRe Endometriosis cohort were recruited and then interviewed.
“The aim was to conduct patient-centered research to define a more appropriate endometriosis management model. Indeed, treatment options remain limited today and many women live with unresolved pain.“, specifies the AP-HP.
Via a questionnaire, the question “If you had a magic wand, what would you change in your care?” was then asked to the candidates.
All these data were analyzed by a research group, made up of researchers, caregivers and patients.
In total, “nearly 2,500 ideas were identified and grouped into 61 areas for improvement“, says the study.
Improve knowledge and recognition of the disease by caregivers
Among these axes, we find: improving knowledge and recognition of the disease by caregivers (41%), improving care and support for problems specific to endometriosis (25%), or even the assurance of early diagnosis with a better diagnostic process and appropriate support (22%).
At the professional level, patients would like positions and working hours to be adjusted and for the disease to be better recognized in the professional sphere.
As certain drugs are not yet reimbursed, patients would like them to become so and that excess fees be avoided.
All this feedback, valuable for ComPaRe, will allow “de define a care model more suited to the experience of patients“.
Endometriosis: what treatments for patients?
At present, the management of endometriosis is personalized according to the health profile of the patient, the symptoms evoked but also the potential adverse effects of drugs.
If the disease is not responsible for any symptoms, no treatment is prescribed.
On the other hand, in the other cases, the usual treatment consists of hormonal treatment (pill, IUD, etonogestrel implant, etc. sometimes prescribed continuously to stop menstruation) associated with analgesic treatment (paracetamol, nonsteroidal anti-inflammatory drugs or analgesics), supposed to reduce pain.
Sometimes surgery is necessary. The surgery, which is very complex, must be performed by expert endometriosis surgeons.