Development of a visual, patient-reported tool for assessing the multi-dimensional burden of endometriosis

Figures & data

Figure 1. Flow chart of the exploratory phase, consensus process, and patient focus group analysis. Timeline of the methods for development of the EndoWheel tool. ^aIndividuals consulted included a pain specialist, a fertility specialist, general practitioners, community physicians, patient advocates, and patients. ^bThe Delphi process was used, with voting on a 9-point scale. Consensus was defined as both ≥80% of respondents indicating high agreement scores in the range of 7–9 and ≤20% indicating low agreement scores in the range of 1–3.

Figure 2. Questionnaire and image of the assessment EndoWheel tool. The tool and the 12 impacts of endometriosis are assessed. Patients are instructed to circle numeric rating scale scores based on their responses to each statement.

Figure 3. Examples of possible completed EndoWheel assessments. The size of the area formed from connecting the scores in each domain allows for visualization of the disease burden.

Table 1. Baseline demographics and characteristics of consensus-phase focus group participants.

Characteristic	Total participants (N = 25)
Age (years)	35.4 (18–49)
Age at surgical diagnosis (years)	28.6 (15–46)
Age at first period (years)	12.0 (9–16)
Race/ethnicity
White	11 (44.0)
African American	9 (36.0)
Hispanic	4 (16.0)
Native American	1 (4.0)
Education
High school diploma/GED	2 (8.0)
Some college	7 (28.0)
Associate degree	3 (12.0)
College degree	11 (44.0)
Professional/advanced degree	2 (8.0)

Data are presented as mean (range) or n (%), unless otherwise stated.

Abbreviation. GED, general equivalency development.

Table 2. Baseline demographics and characteristics of preliminary pilot testing and initial qualitative analysis of individual interviewees.

Characteristic	Total participants (N = 13)
Age (years)	36.5 (26–47)
Age at surgical diagnosis (years)	27.7 (16–40)
Age at first period (years)	12.2 (9–15)
Race/ethnicity^a
White	8 (61.5)
African American	3 (23.1)
Hispanic	2 (15.4)
Native American	1 (7.7)
Education, n (%)
Some college	2 (15.4)
Associate degree	3 (23.1)
College degree	5 (38.5)
Professional/advanced degree	3 (23.1)

Data are presented as mean (range) or n (%), unless otherwise stated.

^a One participant reported more than one race/ethnicity.

Data availability statement

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