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van Barneveld E, Lim A, van Hanegem L, Vork L, Herrewegh A, van Poll M, Manders J, van Osch F, Spaans W, van Koeveringe G, Vrijens D, Kruimel J, Bongers M, Leue C
Patient-Reported Outcome Measure for Real-time Symptom Assessment in Women With Endometriosis: Focus Group Study
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Real-time symptom assessment in patients with endometriosis: The development of an electronic patient-reported outcome measure.
Esther van Barneveld;
Arianne Lim;
Lennie van Hanegem;
Lisa Vork;
Alexandra Herrewegh;
Mikal van Poll;
Jessica Manders;
Frits van Osch;
Wilbert Spaans;
Gommert van Koeveringe;
Desiree Vrijens;
Johanna Kruimel;
Marlies Bongers;
Carsten Leue
ABSTRACT
Background:
Symptoms related to endometriosis are correlated with mental health and have a significant impact on quality of life. The Experience Sampling Method (ESM), a digital questioning method characterized by randomly repeated momentary assessments, overcomes the limitations of current retrospective questionnaires by excluding recall bias and taking into account contextual and psychological factors.
Objective:
The aim was to develop an ESM tool for endometriosis patients in order to accurately measure symptoms and their course over time enabling to provide personalized treatment and adequate monitoring of treatment efficacy in individual patients.
Methods:
Based on international guidelines on the development of Patient Reported Outcome
Measures, items from validated questionnaires were selected by literature review, during focus
group and multidisciplinary expert meetings. Qualitative data analysis was conducted using ATLAS.ti. The feasibility and usability of the newly developed momentary assessment tool were tested for 28 consecutive days in 5 patients with endometriosis related pain symptoms.
Results:
Momentary assessment items contained questions about endometriosis symptoms,
general somatic symptoms, psychological symptoms, contextual information and the
use of food and medication. A morning questionnaire was included concerning sleep and sexuality. In 5 patients, the average compliance rate of momentary assessments was 38% with the highest completing rate during the first 7 days (56%). The morning questionnaire was completed in 81%.
Conclusions:
A new digital tool for endometriosis symptom assessment was developed using ESM. This tool measures real-time symptoms in the context of daily life, is easy to use and may help overcome limitations of current retrospective questionnaires. Clinical Trial: Not applicable.
Citation
Please cite as:
van Barneveld E, Lim A, van Hanegem L, Vork L, Herrewegh A, van Poll M, Manders J, van Osch F, Spaans W, van Koeveringe G, Vrijens D, Kruimel J, Bongers M, Leue C
Patient-Reported Outcome Measure for Real-time Symptom Assessment in Women With Endometriosis: Focus Group Study
