{"paper_id":"c2785cf3-70c0-42c8-a6e9-0575396fa782","body_text":"B R I E F C O M M U N I C A T I O N Open Access\nThe short form endometriosis health profile\n(EHP-5): translation and validation study of the\nIranian version\nAzita Goshtasebi 1, Maryam Nematollahzadeh 1, Fatemeh Zahra Hariri 1 and Ali Montazeri 2*\nAbstract\nBackground: Endometriosis Health Profile (EHP-5) is a valid instrument to measure health-related quality of life in\nendometriosis. This study was conducted to culturally adapt and validate the EHP-5 in Iran.\nMethods: Using a standard “forward-backward’ translation procedure, the English language version of the\nquestionnaire was translated into Persian (Iranian language). Then a sample of 199 women aged 18-50 years\ncompleted the questionnaire. To test reliability the internal consistency was assessed by Cronbach ’s alpha\ncoefficient. Validity was evaluated using known groups comparison.\nResults: The mean age of respondents was 31.4 (SD = 5.4) years. Reliability analysis showed satisfactory result\n(Cronbach’s alpha coefficient = 0.71). The questionnaire discriminated well between sub-groups of women differing\nin infertility and premenstrual syndrome (PMS) in the expected direction.\nConclusion: This preliminary validation study of the Iranian version of the EHP-5 proved that it is an acceptable,\nreliable and valid measure of quality of life in endometriosis patients.\nBackground\nEndometriosis is defined as the presence of endometrial\ntissue (gland and struma) outside the uterus. The most\nfrequent sites of implantation are the pelvic viscera and\nthe peritoneum. Endometriosis is one of the most com-\nmon chronic gynecological conditions that significantly\naffect 10-15% of women of reproductive age [1,2].\nTypically a woman with endometriosis will experience\nvarious symptoms including chronic pelvic pain, dyspar-\neunia and dysmenorrhea, dysuria, abnormal uterine\nbleeding or spotting and sub-fertility [3] and that endo-\nmetriosis represents a serious risk factor for developing\novarian cancer [4].\nSeveral studies have indicated that endometriosis\ncould affect psychological and social well-being and\nthus lead to significant reduction in health-related\nq u a l i t yo fl i f e( H R Q o L )[ 5 ] .Disease-specific instru-\nments are developed to assess the aspects of quality of\nlife particularly affected by a disease or disorder [6].\nRecently Jones et al. deve loped the Endometriosis\nHealth Profile-30 (EHP-30) that is the first standar-\ndized, new disease-specific instrument evaluating the\nhealth-related quality of life in women with endome-\ntriosis [7]. The EHP-30 questionnaire contains a core\nquestionnaire with 30 items and five scales: pain, feel-\ning of control and powerlessness, emotional well-being,\nsocial support, and self-image. Six modular parts\nincluding 23 questions were also provided to measure\nthe areas of sexual intercou rse, work, and relationship\nwith children, feelings about medical profession, treat-\nment and infertility [8]. The authors of EHP-30\ndecided to produce a shorter form of the question-\nnaire. It might be less time consuming and more prac-\ntical, easy to interpret information obtained by\ninstrument, easier for respondents to complete short\nquestionnaire than EHP-30. The Endometriosis Health\nProfile-5 (EHP-5) was developed as a short version of\nthe original questionnaire [9]. The aim of this study\nwas to develop and validate the Iranian version of\nEHP-5. There was no such an instrument available in\nIran.\n* Correspondence: montazeri@acecr.ac.ir\n2Mental Health Research Group, Mother and Child Health Research Centre,\nIranian Institute for Health Sciences Research, ACECR, Tehran, Iran\nFull list of author information is available at the end of the article\nGoshtasebi et al . Journal of Ovarian Research 2011, 4:11\nhttp://www.ovarianresearch.com/content/4/1/11\n© 2011 Goshtasebi et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative\nCommons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and\nreproduction in any medium, provided the original work is properly cited.\n\nMethods\nTranslation and culture adaptation\nForward-backward procedure was applied to translate\nthe English version of the EHP-5 into Persian (the Ira-\nnian language). Two independent professional transla-\ntors produced two forward translations. Both translators\nwere instructed to aim for conceptual rather than literal\ntranslation. Translators with one of the authors com-\npared their translations and produced a single provi-\nsional version. Then two other professional translators\ntranslated the provisional questionnaire back into the\nEnglish. The two translators were not aware of the ques-\ntionnaire. Finally, an exper t committee consisting of\ntranslators, the researchers, two midwifes, and one gyne-\ncologist and one epidemiologist reviewed all the transla-\ntion and cultural adaptation processes were applied.\nThey also evaluated the final English backward version\nwith the original questionnaire. Consensus in terms of\nsemantic, idiomatic, experiential, and conceptual equiva-\nlence was reached and a final version of the question-\nn a i r e( t h eP e r s i a nE H P - 5 )w a sp r o v i d e d .T h ef i n a l\ntranslated version of the questionnaire was given to 10\npatients to complete and declare their understanding of\nthe items to ensure face validity.\nQuestionnaire\nThe EHP-5 contains 11 questions (items): five items\nincluding pain, control and powerlessness, emotional\nwell-being, lack of social support, self image from the\ncore questionnaire and six items from the modular\nquestionnaire that may not be applicable to every\nwoman with endometriosis including work, intercourse,\nand worries about infertility, treatment, and relationship\nwith children and medical professionals. Each item is\nrated on a four-point scale (never = 0, rarely = 1, some-\ntimes = 2, often = 3, always = 4 and not relevant if not\napplicable). Scores on the EHP-5 core and modular\nquestionnaire then are transformed on a scale of 0 (indi-\ncating best possible health status) to 100 (indicating\nworst possible health status). If the ‘not relevant ’ box\nwas ticked for items on modular questionnaire the score\ncould not be computed for that dimension.\nSample and data collection\nThe final draft of the Iranian version of the EHP-5 was\nadministrated to a sample of 199 women with a con-\nfirmed surgical diagnosis o f endometriosis undergoing\nconservative surgery. All women were selected from two\nobstetrics and gynecology clinics in Tehran, Iran (Royan\nInstitute and Avicenna Research Institute both affiliated\nto Iranian Academic Center for Education, Culture and\nResearch).\nThe sample size calculation was based on an assump-\ntion that at least 10% of women in the reproductive age\nwould suffer from endometriosis. Two trained female\nmidwifes collected the data by face-to-face interview 1\nto 12 months after diagnostic laparoscopy. All patients\ncompleted a questionnaire containing brief background\ninformation (such as age, marital and reproductive sta-\ntus, and family history) and the EHP-5 questionnaire.\nThe study was carried out during July 2009 to March\n2011.\nStatistical analysis\nInternal consistency was assessed by calculating Cron-\nbach’s alpha coefficient. Value of 0.7 or greater was con-\nsidered satisfactory [10]. Validity was assessed using\nk n o w ng r o u p sc o m p a r i s o nt ot e s th o ww e l lt h eq u e s -\ntionnaire discriminates be tween subgroups of the study\nsample that differed in reproductive health status. It was\nexpected that women with infertility and PMS would\nhave higher scores than women without infertility and\nPMS in all measures. Mann-Whitney U test was per-\nformed for comparisons. Women with infertility and\nPMS were identified after a confirmed diagnosis by\ngynecologists.\nEthics\nThe study received ethical approval from the Iranian\nInstitute for Health Sciences Research. The authors\ninformed all women regarding the study objectives,\nand indicated that their participation is voluntary and\nthey could withdraw at any time. Both oral and written\ninstructions were given to patients to ensure that\nitems were understood (i.e. there were no right or\nwrong answers to the questions and the participants\nshould feel free and honestly state what they think),\nand the subjects were reassured about the\nconfidentiality.\nResults\nThe study sample\nIn all, 220 women were approached and 199 (90%)\nagreed to be interviewed. The main reason for those\nwho did not participate in the study was dislike. The\nmean age of the respondents was 31.4 (SD = 5.4) years.\nMost were married (94.5%) and university educated\n(43.3%). The characteristics of the respondents are\nshown in Table 1.\nDescriptive statistics and reliability\nThe descriptive statistics of the 5 items are shown in\nTable 2. The Cronbach ’s alpha coefficient was 0.71 for\nthe instrument indicating a satisfactory result.\nGoshtasebi et al . Journal of Ovarian Research 2011, 4:11\nhttp://www.ovarianresearch.com/content/4/1/11\nPage 2 of 5\n\nKnown groups comparison\nKnown groups comparison was used to test the validity.\nIt was hypothesized that women with infertility and PMS\nwould have poorer quality of life than women without\ninfertility and PMS. The analysis showed that the women\nwith infertility had higher scores in pain, control and\npowerlessness, emotional w ell-being and self image and\nindividuals suffering PMS had lower scores in pain, con-\ntrol and powerlessness, emotional well-being and lack of\nsocial support measures as expected (Table 3). This indi-\ncated that the EHP-5 well discriminated between\nsubgroups of the people who differed in reproductive\nhealth status.\nDiscussion\nAlthough cross-cultural validation studies are very diffi-\ncult to be carried out, their results might be considered\nworthwhile. Firstly, they provide standard health mea-\nsures that make health status comparisons between dif-\nferent populations possibl e. Secondly, they provide\nvalidated instrument to monitor population health, esti-\nmate burden of disease and investigate outcomes in\nclinical practice and evaluate treatment effects. This was\nthe first study on psychometric properties of the Iranian\nv e r s i o no fE H P - 5a m o n ga nI r a n i a np o p u l a t i o n .T h e\nresults showed that the in strument was a reliable and\nvalid measure that can be used in monitoring and mea-\nsuring health-related quality of life of women with\nendometriosis.\nSimilarly the validity of the EHP-5 in different cultures\nwas well documented. For instance, the finding from an\nEnglish study showed that the instrument had good\nvalidity and could be applied among women with endo-\nmetriosis [9]. Furthermore, a French version of the\nEHP-5 questionnaire has been developed and its accept-\nability and feasibility was desirable although validity was\nnot reported [10].\nIranian version of the EHP-5 was extracted from its\nEnglish version. The translation of the EHP-5 in Iran\nwent through a rigorous method and was approved by\nthe questionnaire ’s developers. Thus we did not encoun-\nter any difficulties in data collection.\nThe EHP-5 was basically designed to be a self-admini-\nstrated questionnaire but it can be completed through an\ninterview in person or by telephone [11]. However, face-\nto-face administration of questionnaire allowed the inter-\nviewers to collect data without any missing data.\nAlthough method of completing the EHP-5 has not been\nmentioned in its manual, the designers administered it by\nmail (self-administrated) and the rate of returning the\nquestionnaire was reported to be 37.1% [9].\nReliability was assessed by internal consistency and\nvalidity was examined by known groups comparison.\nCronbach’s alpha coefficient showed a satisfactory result\nTable 1 Demographic characteristics of the studied\nwomen (n = 199)\nNo %\nAge (year)\n18-25 26 13.1\n26-30 65 32.7\n31-35 65 32.7\n≥ 36\nMean (SD)\n43\n31.4 (5.4)\n21.6\nEducation\nPrimary 15 8\nJunior high school 30 16\nHigh school 61 32.6\nUniversity 81 43.3\nMarital status\nSingle 9 4.5\nMarried 188 94.5\nWidowed 2 1\nEmployment status\nEmployed 51 25.6\nStudent 8 4\nHousewife 14 70.4\nFertility status\nFertile 35 17.6\nInfertile 164 82.4\nPMS\nYes 60 30.2\nNo 139 69.8\nTable 2 Descriptive statistics for the EHP-5 core questionnaire\nMean row scores (SD) 95% CI Skewness Response frequencies (%)\nNever Rarely Some times Often Always\nPain 0.085 (0.07) 0.7-1 0.937 52.8 17.1 24.1 4 2\nControl & powerlessness 1.44 (0.09) 1.26-1.62 -0.95 34.7 15.1 29.6 12.6 8\nEmotional well-being 1.68 (1.3) 1.50-1.87 0.20 25.1 18.1 30.7 15.1 11.1\nLack of social support 1.37 (1.35) 1.18-1.57 0.511 38.7 16.6 22.1 13.6 9\nSelf image 1.48 (1.42) 1.27-1.68 0.375 40.2 12.6 17.1 19.1 11.1\nGoshtasebi et al . Journal of Ovarian Research 2011, 4:11\nhttp://www.ovarianresearch.com/content/4/1/11\nPage 3 of 5\n\n[12]. Known groups comparison indicated that the EHP-\n5 score were able to distinguish very well between sub-\ngroups of the respondents who differed in reproductive\nhealth status. The study showed that women with infer-\ntility and PMS had poorer health compared to women\nwithout infertility and PMS. These findings are consis-\ntent with results from other studies carried out in differ-\nent countries [12-15]. However, there were no\nsignificant differences in social support between fertile\nand infertile or women with and without PMS. This\nmight be explained by the fact that endometriosis by\nitself is a chronic disease and thus as it relates to social\nsupport, both fertile and infertile women or those with\nand without PMS showed a relatively similar scores and\ntherefore one might not expect to find significant differ-\nences between women in this domain.\nTools assessing quality of life are being used in\nresearch and clinical trials rarely. For instance, only 17%\nof randomized trials assessed in a systematic review on\nthe measurement of HRQoL in women had used stan-\ndardized instruments [15]. In addition, often the instru-\nments have been used in research just measured one\ndimension of illness e.g. psychological health status\nwithout identifying other areas of well being affected by\ndisease [16]. Reasons for the limited use of health sta-\ntues instruments in clinical setting are that they are too\nlong and complicated for clinicians to understand and\ninterpret the data gained by long health statues instru-\nments, and also they are too burdensome for respondent\nto complete them [17,18]. The short form EHP-5 pro-\nvides the chance of using a very brief instrument that\nmeasures health outcome for women with endometriosis\nwhere the long form version w ould not be appropriate.\nThe results obtained by the EHP-5 from the analyses\nsuggest this instrument provides the same picture of\nhealth-related quality of life as the longer version [9].\nAlthough this study did not provide evidence for test-\nretest reliability, responsiveness to change or other tests;\noverall the findings showed that the Iranian version of\nEHP-5 is a reliable measure for measuring health quality\nof life in endometriosis patients. It will be especially use-\nful in clinical settings where a short and economical\nendometriosis health status measure is needed. The\nfuture studies could focus on other psychometric prop-\nerties of the EHP-5 questionnaire and also on different\napplications of the questionnaire as a recent study has\nsuggested even it is a useful index in order to evaluate\ncost-effectiveness of healthcare interventions [19].\nConclusion\nThis study presents the first step in evaluating psycho-\nmetric properties of a well-known instrument measuring\nhealth-related quality of life of Iranian patients with\nendometriosis. Since healt h related quality of life was\nrarely assessed as primary end-point in studies of endo-\nmetriosis in Iran, the Persian EHP-5 might possibly pro-\nvide both clinicians and patients with numerous\nadvantages as an important o utcome measure in future\nstudies. However, its sensitivity to change needs still to\nbe studied.\nAcknowledgements\nWe wish to express gratitude to people who co-operated in the selection of\nthe patients and patients who gave their time to complete the\nquestionnaire.\nAuthor details\n1Family Health Research Group, Mother and Child Health Research Centre,\nIranian Institute for Health Sciences Research, ACECR, Tehran, Iran. 2Mental\nHealth Research Group, Mother and Child Health Research Centre, Iranian\nInstitute for Health Sciences Research, ACECR, Tehran, Iran.\nAuthors’ contributions\nAll authors were involved in designing of the study, data collection and\nanalysis, interpretation of results and manuscript preparation. AG, MN and\nFZH prepared the first draft of the paper. AM and AG provided the final\nmanuscript. All authors read and approved the final manuscript.\nCompeting interests\nThe authors declare that they have no competing interests.\nReceived: 31 May 2011 Accepted: 27 July 2011 Published: 27 July 2011\nReferences\n1. Melin A, Sparén P, Persson I, Bergqvist A: Endometriosis and the risk of\ncancer with special emphasis on ovarian cancer. Human Reproduction\n2006, 98:1237-42.\n2. Berek JS: Berek and Novak ’s Gynecology Philadelphia: Lippincott Williams and\nWilkins; 2007, 1137-1184.\n3. Gao X, Yeh YC, Outley J, simon J, Botteman M, Spalding J: Health-related\nquality of life burden of women with endometriosis: a literature review.\nCurrent Medical Research and Opinion 2006, 22:1787-1797.\n4. Aris A: Endometriosis-associated ovarian cancer: A ten-year cohort study\nof women living in the Estrie Region of Quebec, Canada. J Ovarian Res\n2010, 3:2.\nTable 3 known groups comparison for the EHP-5*\nInfertility No (n = 35) Yes (n = 164)\nMean (SEM) Mean (SEM) P**\nPain 19.05 (2.01) 32.14 (4.29) 0.007\nControl & powerlessness 34.14 (2.54) 45.0 (5.2) 0.07\nEmotional well-being 38.87 (2.39) 57.85 (6.21) 0.002\nLack of social support 32.85 (5.95) 34.75 (2.62) 0.7\nSelf image 32.77 (2.74) 57.14 (6.02) < 0.0001\nPMS No (n = 139) Yes (n = 60)\nMean (SEM) Mean (SEM) P**\nPain 18.70 (2.16) 27.5 (3.44) 0.02\nControl & powerlessness 31.47 (2.60) 46.66 (4.38) 0.002\nEmotional well-being 37.76 (2.57) 52.5 (4.55) 0.003\nLack of social support 33.81 (2.88) 35.83 (4.34) 0.7\nSelf image 33.45 (2.97) 45.41 (4.91) 0.03\n* The higher scores indicate worse conditions\n** Derived from Mann-Whitney U test.\nGoshtasebi et al . Journal of Ovarian Research 2011, 4:11\nhttp://www.ovarianresearch.com/content/4/1/11\nPage 4 of 5\n\n5. 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Jones GL, Kennedy SH, Jenkinson C: Health-related quality of life\nmeasurement in women with common benign gynecologic conditions:\na systematic review. Am J Obstet Gynecol 2002, 187:501-511.\n16. Fitzpatrick R: Applications of health status measures. In Measuring Health\nand Medical Outcomes. Edited by: Jenkinson C. London: UCL Press;\n1994:27-41.\n17. Coste J, Guillemin F, Pouchet J, Fermanian J: Methodological approaches\nto shortening composite measurement scales. J Clin Epidemiol 1997,\n50:247-252.\n18. Cox DR, Fitzpatrick R, Fletcher AE, Gore SM, Spiegelhalter DJ, Jones DR:\nQuality of life assessment: can we keep it simple? J R Statist Soc A 1992,\n155:353-393.\n19. Winkel CA: A cost-effective approach to the management of\nendometriosis. Curr Opin Obstet Gynecol 2000, 12:317-320.\ndoi:10.1186/1757-2215-4-11\nCite this article as: Goshtasebi et al .: The short form endometriosis\nhealth profile (EHP-5): translation and validation study of the Iranian\nversion. Journal of Ovarian Research 2011 4:11.\nSubmit your next manuscript to BioMed Central\nand take full advantage of: \n• Convenient online submission\n• Thorough peer review\n• No space constraints or color figure charges\n• Immediate publication on acceptance\n• Inclusion in PubMed, CAS, Scopus and Google Scholar\n• Research which is freely available for redistribution\nSubmit your manuscript at \nwww.biomedcentral.com/submit\nGoshtasebi et al . Journal of Ovarian Research 2011, 4:11\nhttp://www.ovarianresearch.com/content/4/1/11\nPage 5 of 5","source_license":"CC0","license_restricted":false}