Development of a French Version of The Endometriosis Health Profile (EHP-5): Cross-Cultural Adaptation and

Comparison with the EQ-5D

Arnaud Fauconnier1,2, Laura Chaillou1, Céline Muratorio1, Cyrille Huchon1,2, Pierre Panel3

1) Department of Gynaecology & Obstetrics, Centre Hospitalier Intercommunal de Poissy – Saint-Germain, University of Versailles Saint-Quentin (UVSQ), Poissy, France; (2) Research unit EA 7285 RISCQ, Université Versailles St-Quentin, 78180 Montigny-le-Bretonneux, France; (3) Department of

Gynaecology & Obstetrics, Centre Hospitalier André Mignot, Versailles, France Disclosure of Interest: None

Impaired mobility and other daily

living activity

Endometriosis Health Related

QOL Side effects of treatments

Emotional well-being

Infertility

Pain symptoms

Social isolation

Loss of work performance

Impaired sexual

relationship

EHP-30: a 53 items instrument specifically designed to measure the impact of endometriosis upon QOL

Control and powerlessness ‘It is just the restrictions it puts on you. You just have to think before you do anything. If you are invited for a night you have to say how am I going to feel. Am I going to be able to make it work and at the moment being ill fits into my schedule. It is part of my life.’

Emotional well-being

‘I just could not cope. I just could not cope with it. I couldn’t stand up straight because I felt as if I was just cramped all inside the stomach . . . some points I couldn’t even sit down because it was painful in the back passage.’ ‘I obviously got very emotional when I was in pain because obviously it hurt that much I used to cry. It was just painful and for two days I used to be curled up on the sofa with hot water bottles.’

Treatment

‘It is just really the taking of tablets, the expense of the tablets as well. You’re trying all these different things and you end up with a cocktail of tablets and there is nothing that anybody can do about it.’ ‘Sometimes I used to feel why the hell have I got this and why can’t they do anything about it. Each time I come to the hospital I question them again about why am I getting it back again, things like that and getting very frustrated when I couldn’t get an answer.’

Medical profession

‘I think the biggest problem initially was getting a diagnosis which took years. I mean obviously I had this, now I realise I had it for a very long time, since I was probably about twenty, twenty-two and I’m now thirty-nine and I didn’t get diagnosed properly until 1996.’

Jones, et al (2004) J Psychosom Obstet Gynaecol Jones, et al (2006) Hum Reprod

Development of the Short Form Endometriosis Health Profile Questionnaire: the EHP-5

Jones, et al (2004) Qual Life Res

Methodology for translation of the EHP-5 questionnaire in French

Renouvel et al J Gynecol Obstet Biol Reprod (Paris), 2009

EQ-5D: a measure of health status fromthe EuroQol Group

Population study

Two French tertiary referral centers

Patients: 125 women with histologically-proven endometriosis operated for painful symptoms and/or infertility

Controls: 80 asymptomatic women of reproductive age recruited from the medical staff

Statistics

Tests of data quality: Descriptive statistics, Missing data levels, Floor and ceiling effects

Principal components analysis: Dimensions of the instrument (Scree Plot) Internal consistency (Cronbach alpha)

Known group validity: Testing pre-established relationship between EHP-5, and endometriosis or patients' characteristics Effect size (Cohen’s d) of different factors affecting EHP-5 Comparison with EQ-5D

Descriptive statistics and score distributions for the 11 items of the Endometriosis Health Profile-5

Item n % Missing Mean (SD) Median Range Number of theoretical levels

Number of actual levels

% scoring minimum

(floor)

% scoring maximum (ceiling)

% scoring > mid-scale

Skewness

Pain 198 3.4 1.1 (1.3) 1 0 - 4 5 5 46.8 4.4 18.7 0.7

Control and powerlessness

194 5.4 1.4 (1.5) 1 0 - 4 5 5 43.9 11.7 29.4 0.5

Emotions 196 4.4 1.8 (1.3) 2 0 - 4 5 5 23.4 5.4 35.2 -0.1

Social support 197 3.9 1.4 (1.5) 1 0 - 4 5 5 42.4 10.2 27.9 0.5

Self-image 196 4.4 1.1 (1.3) 0 0 - 4 5 5 49.3 5.4 20.4 0.7

Work 196 4.4 0.9 (1.2) 0 0 - 4 5 5 55.1 3.9 15.3 1.0

Children 137 33.2 0.7 (1.1) 0 0 - 4 5 5 43.9 1.5 7.3 1.4

Sexual intercourse 195 4.9 1.4 (1.5) 1 0 - 4 5 5 44.4 15.1 27.2 0.5

Medical profession 198 3.4 0.7 (1.2) 0 0 - 4 5 5 66.8 5.4 11.6 1.5

Treatment 174 15.1 1.2 (1.5) 0 0 - 4 5 5 44.4 10.2 22.4 0.8

Infertility 195 4.9 1.8 (1.7) 2 0 - 4 5 5 38.5 26.3 40.5 0.2

EHP5 total score 199 2.9 13.0 (11.1) 11 0 - 44 45 45 33.7 0.5 24.1 0.4

Individual scoring of each item of EHP-5, in endometriosis patients and in the control group

Scree plot of the 11 items of the EHP5

Chronbach alpha= 0.92

Comparison of the responsiveness of the EHP5 and the EQ-5D scales by calculating the effect size (Cohen's d) of variables found to be related to either pain scale at p<0.05

French version of EHP-5 has internal and external validity

One-dimensional nature of the items of the French version of the EHP5 The EHP5 scale could be used as a whole to measure the QOL of endometriosis Individual items and aggregated score index were very sensitive to endometriosis patients compared to control groups of women of the same age Important correlations between EHP5 and criteria’s known to indicate the severity of the disease The EHP-5 was more sensitive to the characteristics of the disease than the EQ-5D

Future research neededResponsiveness (sensitivity to change)

Medical therapy Surgical therapy Infertility therapy

Clinical impact of the questionnaire Identifying groups at risk of endometriosis Pronostic factors after endometriosis treatement

Implementation of the EHP-5 in patient care