The EPHect Patient Questionnaire (EPQ) was developed through broad representation of those who collect epidemiolocial and genetic data in endometriosis research.
Its aim is to collect sufficient data to truly understand the behaviour of endometriosis and its comorbidities. To achieve this, all data must be collected in the same way, and the EPQ has been created to aid with this:
The EPQ is available in REDCap (in English and Hispanic). Please contact us if you require assistance using the EPQ.
Arabic, Assamese, Chinese, Danish, Dutch/Flemish, English, Farsi, French, German, Hindi, Hispanic, Italian, Kannada, Malayalam, Marathi, Polish, Portuguese, Spanish, and Turkish. If you are interested in obtaining the EPQ in any of these languages, then please contact us.
The EPQ is currently being translated into Finnish, Hebrew, Malay, and Thai.
The short form McGill Pain Questionnaire v1 (SF-MPQv1) is included in the EPQ. However, users should consider replacing this with the most recent SF-MPQv2, as ratings are given on an 11-point scale, similar to the measures of pain intensity, and seven additional questions allow for the calculation of four separate domains (continuous pain, intermittent pain, neuropathic pain, and affective) and a total score as opposed to the original version which only calculates two domains (sensory and affective) and a total score. Use of the SF-MPQv2 requires a signed user agreement, which is why it was not included in the EPQ-S.
Validated depression and anxiety scales that can be helpful for patient stratification include measures such as the Beck Depression Inventory (BDI) and the State Trait Anxiety Inventory (STAI), both of which are also considered valid for healthy controls. Alternatively, to save time and/or space, a combined measure such as the Hospital Anxiety and Depression Scale (HADS) can be used, but it has been argued that this is more useful as a measure of overall psychological distress than for accurately determining the degree of anxiety and depression. We recommend that individual sites consider including these additional scales when adopting the EPHect EPQ.
Allison F Vitonis, Katy Vincent, Nilufer Rahmioglu, Amelie Fassbender, Germaine M Buck Louis, Lone Hummelshoj, Linda C Giudice, Pamela Stratton, G David Adamson, Christian M Becker, Krina T Zondervan, Stacey A Missmer; WERF EPHect Working Group. World Endometriosis Research Foundation (WERF) Endometriosis Phenome and biobanking harmonization project (EPHect): II. Clinical and covariate phenotype data collection in endometriosis research. Fertil Steril 2014;102(5):1223-1232
Investigators using EPHect tools are asked to include the following acknowledgment in all publications and presentations that utilise data collected using the EPHect questionnaires, forms, or sample collection protocols:
"Data collection was facilitated by and conducted in compliance with the Endometriosis Phenome and Biobanking Harmonisation Project (EPHect)."
Please also cite the above paper whenever data collected utilising these protocols are published.
In addition, investigators whose data collection tools or methods included alterations to the EPHect standardised protocols are asked to describe those changes in the Methods section of manuscripts and when presenting their study results.
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