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Accepted for/Published in: JMIR Formative Research

Date Submitted: Mar 15, 2021
Date Accepted: Oct 15, 2021
Date Submitted to PubMed: Dec 6, 2021

The final, peer-reviewed published version of this preprint can be found here:

Patient-Reported Outcome Measure for Real-time Symptom Assessment in Women With Endometriosis: Focus Group Study

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

JMIR Form Res 2021;5(12):e28782

DOI: 10.2196/28782

PMID: 34870608

PMCID: 8686475

A patient-reported outcome measure for real-time symptom assessment in women with endometriosis: a focus group study.

  • 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

JMIR Form Res 2021;5(12):e28782

DOI: 10.2196/28782

PMID: 34870608

PMCID: 8686475

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