PRO data and endometriosis

Endometriosis manifests itself by endometrial tissue (tissue similar to that in the uterus) existing in other places than the uterus: typically on the outside of it, on ovaries, intestines etc. The disease affects about 10% of women in their reproductive age.

Endometriosis typically occurs in the teen years, but is on average diagnosed seven years later. Patients describe the disease as invalidating and painful, but there is no cure, and the purpose of treatment is relieving pain. Symptoms often recur, so patients are in frequent contact with the healthcare system.

For these reasons, there is a need for greater focus on the disease, for women to receive treatment earlier and meet a healthcare system that comprehends their disease and their individual situation.

AIM

This PhD project will apply Patient Reported Outcome data (PRO) to improve the treatment of endometriosis, strengthen the patient involvement and reduce the waiting time that affects this area. The project will develop a digital PRO questionnaire called telePROM, in which the patients will report their symptoms.

TelePROM will then be validated by investigating the user experience of patients and staff.

The patient’s answer can be a great help for health staff to point out their needs and potential alarm symptoms. They are then able to assess whether a specialised consultant or a specialised nurse should see the patient. This wil make it possible to attend to more patients, as most consultations today are made by consultants.

The healthcare professional will also be able to use the patient-reported data during the conversation and thereby ensuring that the consultations focus on the current needs of the particular patient.

The first part of the project will test the stability of the telePROM questionnaire over time and the relevancy of the content as experienced by the patients. This part will involve quantitative and qualitative methods in the shape of focus group interviews and a questionnaire.

The next part will analyse how PRO data is used in actual clinical practice. Here, singular and focus group interviews will be involved, using Interpretive Description as a research method.

EXPECTED RESULTS

The project is expected to strengthen patient involvement in the treatment of endometriosis and hopefully improve the quality of life of the patients, as they will feel more supported by the health staff and become better at managing their symptoms in their daily life.

When health staff utilises PRO data in order to better assess the patients’ needs, more patients may in the end be able to be seen by a professional, and the waiting lists for treatment may be reduced. PRO data thus has the potential to help women with endometriosis to get diagnosed and treated earlier than is the case today.

PARTNERS

This is a PhD project by Maria Monberg Feenstra.

The main supervisor is Martin Rudnicki, PhD, DMSc, MD at the Department of Gynaecology and Obstetrics at Odense University Hospital (OUH)

Co-supervisors are Anne Sidenius, PhD, cand.scient.anth., Steno Diabetes Center Copenhagen and Charlotte Nielsen, PhD, MScN, RN at the Department of Oral and Maxillofacial Surgery at OUH and Clinical Institute, University of Southern Denmark (SDU).

EXTERNAL FUNDING

This project is funded by

• Aage and Johanne Louis-Hansen’s Foundation
• Johan Schrøder’s Foundation
• The Regional Development and Research Pool
• University of Southern Denmark
• Department of Gynaecology and Obstetrics at Odense University Hospital
• Odense University Hospital’s internationalisation pool
• The Danish Nurses’ Organisation through M.L. Jørgensen and Gunnar Hansen’s foundation