[en] PURPOSE: To develop a questionnaire based on patients' verbal descriptors, to measure the painful symptoms of endometriosis. METHODS: We performed a two-round modified DELPHI procedure mixing endometriosis patients and physicians to select a set of statements to describe the painful symptoms of endometriosis. Each panelist rated each statement based on diagnosis validity and clarity. The clinicians were experts in endometriosis management selected from various geographic regions in France. Patients were women with surgically confirmed endometriosis who volunteered from a patient association and from the recruitment of the participating physicians. The first round questions were derived from words and phrases in narratives of pain by endometriosis patients. RESULTS: Overall, 76 experts were invited, and of these 56 (74%), comprising 33 patients and 23 gynecologists, responded to the first round questionnaire, and 40 (71.4%) to the second round. Among the 48 statements assessed in the first-round questionnaire, 11 were selected after completion of the two round DELPHI procedure. After discussion and rewording of some items, a total of 21 questions were selected during a final face-to-face meeting. The content of the final questionnaire is organized according to four dimensions: (i) spontaneous pelvic pain and dysmenorrhea, (ii) dyspareunia, (iii) painful bowel symptoms, (iv) and other symptoms. We also provide an English (UK) version produced using several steps of translation and back-translation. CONCLUSIONS: The questionnaire has content validity to measure the subjective experiences of patients with painful endometriosis and can provide a solid basis on which to develop an efficient patient-centered outcome to measure the painful symptoms in therapeutic or in diagnostic studies of endometriosis.
Disciplines :
Reproductive medicine (gynecology, andrology, obstetrics)
Author, co-author :
Fauconnier, A.
Staraci, S.
Darai, E.
Descamps, P.
Nisolle, Michelle ; Université de Liège - ULiège > Département des sciences cliniques > Gynécologie - Obstétrique
Panel, P.
Roman, H.
Boulkedid, R.
Language :
English
Title :
A self-administered questionnaire to measure the painful symptoms of endometriosis: Results of a modified DELPHI survey of patients and physicians.
Publication date :
2018
Journal title :
Journal of Gynecology Obstetrics and Human Reproduction
eISSN :
2468-7847
Publisher :
Elsevier Masson
Volume :
47
Issue :
2
Pages :
69-79
Peer reviewed :
Peer Reviewed verified by ORBi
Commentary :
Copyright (c) 2017 Elsevier Masson SAS. All rights reserved.
Buck Louis, G.M., Hediger, M.L., Peterson, C.M., Croughan, M., Sundaram, R., Stanford, J., et al. Incidence of endometriosis by study population and diagnostic method: the ENDO study. Fertil Steril 96 (2011), 360–365.
Fauconnier, A., Chapron, C., Endometriosis and pelvic pain: epidemiological evidence of the relationship and implications. Hum Reprod Update 11 (2005), 595–606.
Culley, L., Law, C., Hudson, N., Denny, E., Mitchell, H., Baumgarten, M., et al. The social and psychological impact of endometriosis on women's lives: a critical narrative review. Hum Reprod Update 19 (2013), 625–639.
Bergqvist, A., Bergh, T., Hogstrom, L., Mattsson, S., Nordenskjold, F., Rasmussen, C., Effects of triptorelin versus placebo on the symptoms of endometriosis. Fertil Steril 69 (1998), 702–708.
Abbott, J., Hawe, J., Hunter, D., Holmes, M., Finn, P., Garry, R., Laparoscopic excision of endometriosis: a randomized, placebo-controlled trial. Fertil Steril 82 (2004), 878–884.
Bourdel, N., Alves, J., Pickering, G., Ramilo, I., Roman, H., Canis, M., Systematic review of endometriosis pain assessment: how to choose a scale?. Hum Reprod Update 21 (2015), 136–152.
Fauconnier, A., Staraci, S., Huchon, C., Roman, H., Panel, P., Descamps, P., Comparison of patient- and physician-based descriptions of symptoms of endometriosis: a qualitative study. Hum Reprod, 2013.
Geysenbergh, B., Dancet, E.A., D'Hooghe, T., Detecting endometriosis in adolescents: why not start from self-report screening questionnaires for adult women?. Gynecol Obstet Invest, 2016.
Stull, D.E., Wasiak, R., Kreif, N., Raluy, M., Colligs, A., Seitz, C., et al. Validation of the SF-36 in patients with endometriosis. Qual Life Res 23 (2014), 103–117.
Jones, G., Jenkinson, C., Taylor, N., Mills, A., Kennedy, S., Measuring quality of life in women with endometriosis: tests of data quality, score reliability, response rate and scaling assumptions of the Endometriosis health profile questionnaire. Hum Reprod 21 (2006), 2686–2693.
Nnoaham, K.E., Hummelshoj, L., Kennedy, S.H., Jenkinson, C., Zondervan, K.T., World endometriosis research foundation women's health symptom survey, C., Developing symptom-based predictive models of endometriosis as a clinical screening tool: results from a multicenter study. Fertil Steril 98 (2012), 692–701 e695.
Chapron, C., Barakat, H., Fritel, X., Dubuisson, J.-B., Bréart, G., Fauconnier, A., Presurgical diagnosis of posterior deep infiltrating endometriosis based on a standardized questionnaire. Human Reprod 20 (2005), 507–513.
Powell, C., The Delphi technique: myths and realities. J Adv Nurs 41 (2003), 376–382.
Boulkedid, R., Abdoul, H., Loustau, M., Sibony, O., Alberti, C., Using and reporting the Delphi method for selecting healthcare quality indicators: a systematic review. Plos One, 6, 2011, e20476.
Colaizzi, P.F., Psychological research as the phenomenologist views it. Valle, R.S., King, G., (eds.) Existential-phenomenological alternatives for psychology, 1978, Oxford University Press, New York, 48–71.
Guillemin, F., Bombardier, C., Beaton, D., Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. J Clin Epidemiol 46 (1993), 1417–1432.
Telimaa, S., Puolakka, J., Ronnberg, L., Kauppila, A., Placebo-controlled comparison of danazol and high-dose medroxyprogesterone acetate in the treatment of endometriosis. Gynecol Endocrinol 1 (1987), 13–23.
Jairath, N., Weinstein, J., The Delphi methodology (part one): a useful administrative approach. Can J Nurs Adm 7 (1994), 29–42.
Nelson, E.C., Eftimovska, E., Lind, C., Hager, A., Wasson, J.H., Lindblad, S., Patient reported outcome measures in practice. BMJ, 350, 2015, g7818.
Walker, A.M., Selfe, J., The Delphi method: a useful tool for the allied health researcher. Int J Ther Rehabil 3 (1996), 677–681.
Maggiore, U., Ferrero, S., Candiani, M., Somigliana, E., Viganò P., Vercellini, P.,Maggiore, U., Ferrero, S., Candiani, M., Somigliana, E., Viganò P., Vercellini, P. (In press). Bladder endometriosis: a systematic review on pathogenesis, diagnosis, treatment, impact on fertility and risk of malignant transformation. Eur Urol.
Stratton, P., Berkley, K.J., Chronic pelvic pain and endometriosis: translational evidence of the relationship and implications. Hum Reprod Update 17 (2011), 327–346.
Aubry, G., Panel, P., Thiollier, G., Huchon, C., Fauconnier, A., Measuring health-related quality of life in women with endometriosis: comparing the clinimetric properties of the Endometriosis health profile-5 (EHP-5) and the EuroQol-5D (EQ-5D). Hum Reprod 32 (2017), 1258–1269.
Mahmood, T.A., Templeton, A.A., Thomson, L., Fraser, C., Menstrual symptoms in women with pelvic endometriosis. Br J Obstet Gynaecol 98 (1991), 558–563.
Forman, R.G., Robinson, J.N., Mehta, Z., Barlow, D.H., Patient history as a simple predictor of pelvic pathology in subfertile women. Hum Reprod 8 (1993), 53–55.
Gruppo Italiano per lo Studio dell'Endometriosi. Relationship between stage, site and morphological characteristics of pelvic endometriosis and pain. Hum Reprod 16 (2001), 2668–2671.
Porpora, M.G., Koninckx, P.R., Piazze, J., Natili, M., Colagrande, S., Cosmi, E.V., Correlation between endometriosis and pelvic pain. J Am Assoc Gynecol Laparosc 6 (1999), 429–434.
Fedele, L., Bianchi, S., Zanconato, G., Portuese, A., Raffaelli, R., Use of a levonorgestrel-releasing intrauterine device in the treatment of rectovaginal endometriosis. Fertil Steril 75 (2001), 485–488.
Mokkink, L.B., Terwee, C.B., Patrick, D.L., Alonso, J., Stratford, P.W., Knol, D.L., et al. The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study. Qual Life Res 19 (2010), 539–549.
Deal, L.S., DiBenedetti, D.B., Williams, V.S., Fehnel, S.E., The development and validation of the daily electronic Endometriosis pain and bleeding diary. Health Qual Life Outcomes, 8, 2010, 64.
Vincent, K., Kennedy, S., Stratton, P., Pain scoring in endometriosis: entry criteria and outcome measures for clinical trials. Report from the Art and science of endometriosis meeting. Fertil Steril 93 (2010), 62–67.
Biberoglu, K.O., Behrman, S.J., Dosage aspects of danazol therapy in endometriosis: short-term and long-term effectiveness. Am J Obstet Gynecol 139 (1981), 645–654.
Hornstein, M.D., Yuzpe, A.A., Burry, K.A., Heinrichs, L.R., Buttram, V.L. Jr., Orwoll, E.S., Prospective randomized double-blind trial of 3 versus 6 months of nafarelin therapy for endometriosis associated pelvic pain. Fertil Steril 63 (1995), 955–962.
Ling, F.W., Pelvic pain study group. Randomized controlled trial of depot leuprolide in patients with chronic pelvic pain and clinically suspected endometriosis. Obstet Gynecol 93 (1999), 51–58.
