development of a french version of the endometriosis...
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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
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
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