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      The cost of illness and economic burden of endometriosis and chronic pelvic pain in Australia: A national online survey

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          Abstract

          Introduction

          Endometriosis has a significant cost of illness burden in Europe, UK and the USA, with the majority of costs coming from reductions in productivity. However, information is scarce on if there is a differing impact between endometriosis and other causes of chronic pelvic pain, and if there are modifiable factors, such as pain severity, that may be significant contributors to the overall burden.

          Methods

          An online survey was hosted by SurveyMonkey and the link was active between February to April 2017. Women aged 18–45, currently living in Australia, who had either a confirmed diagnosis of endometriosis via laparoscopy or chronic pelvic pain without a diagnosis of endometriosis were included. The retrospective component of the WERF EndoCost tool was used to determine direct healthcare costs, direct non-healthcare costs (carers) and indirect costs due to productivity loss. Estimates were extrapolated to the Australian population using published prevalence estimates.

          Results

          407 valid responses were received. The cost of illness burden was significant in women with chronic pelvic pain (Int $16,970 to $ 20,898 per woman per year) irrespective of whether they had a diagnosis of endometriosis. The majority of costs (75–84%) were due to productivity loss. Both absolute and relative productivity costs in Australia were higher than previous estimates based on data from Europe, UK and USA. Pain scores showed the strongest relationship to productivity costs, a 12.5-fold increase in costs between minimal to severe pain. The total economic burden per year in Australia in the reproductive aged population (at 10% prevalence) was 6.50 billion Int $.

          Conclusion

          Similar to studies in European, British and American populations, productivity costs are the greatest contributor to overall costs. Given pain is the most significant contributor, priority should be given to improving pain control in women with pelvic pain

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          Most cited references26

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          Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries.

          Kelechi E. Nnoaham, Lone Hummelshoj, Premila Webster … (2011)
          To assess the impact of endometriosis on health-related quality of life (HRQoL) and work productivity. Multicenter cross-sectional study with prospective recruitment. Sixteen clinical centers in ten countries. A total of 1,418 premenopausal women, aged 18-45 years, without a previous surgical diagnosis of endometriosis, having laparoscopy to investigate symptoms or to be sterilized. None. Diagnostic delay, HRQoL, and work productivity. There was a delay of 6.7 years, principally in primary care, between onset of symptoms and a surgical diagnosis of endometriosis, which was longer in centers where women received predominantly state-funded health care (8.3 vs. 5.5 years). Delay was positively associated with the number of pelvic symptoms (chronic pelvic pain, dysmenorrhoea, dyspareunia, and heavy periods) and a higher body mass index. Physical HRQoL was significantly reduced in affected women compared with those with similar symptoms and no endometriosis. Each affected woman lost on average 10.8 hours (SD 12.2) of work weekly, mainly owing to reduced effectiveness while working. Loss of work productivity translated into significant costs per woman/week, from US$4 in Nigeria to US$456 in Italy. Endometriosis impairs HRQoL and work productivity across countries and ethnicities, yet women continue to experience diagnostic delays in primary care. A higher index of suspicion is needed to expedite specialist assessment of symptomatic women. Future research should seek to clarify pain mechanisms in relation to endometriosis severity. Copyright © 2011 American Society for Reproductive Medicine. Published by Elsevier Inc. All rights reserved.
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            Endometriosis: epidemiology and aetiological factors.

            Paola Viganò, Fabio Parazzini, Edgardo Somigliana … (2004)
            Estimates of the frequency of endometriosis vary widely. Based on the few reliable data, the prevalence of the condition can reasonably be assumed to be around 10%. Although no consistent information is available on the incidence of the disease, temporal trends suggest an increase among women of reproductive age. This could be explained-at least in part-by changing reproductive habits. Numerous epidemiological studies have indicated that nulliparous women and women reporting short and heavy menstrual cycles are at increased risk of developing endometriosis; data on other risk factors are less consistent. These epidemiological findings strongly support the menstrual reflux hypothesis. Additional evidence in favour of this theory includes the demonstration of viable endometrial cells in the menstrual effluent and peritoneal fluid, experimental implantation and growth of endometrium within the peritoneal cavity, observation of some degree of retrograde menstruation in most women undergoing laparoscopy during menses, and an association between obstructed menstrual outflow and endometriosis.
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              Impact of endometriosis on women’s lives: a qualitative study

              Maryam Moradi Recabdarkolaee, Melissa Parker, Anne Sneddon … (2014)
              Background This study aimed to explore women’s experiences of the impact of endometriosis and whether there are differences across three age groups. Methods A qualitative descriptive design was conducted using semi-structured focus group discussions with 35 Australian women with endometriosis, in three age groups. All tape-recorded discussions were transcribed verbatim and read line by line to extract meaningful codes and categories using NVivo 9 software through a thematic analysis approach. Categories were then clustered into meaningful themes. Results Participants’ ages ranged from 17 to 53 years and had a history of 2 to 40 years living with endometriosis, with an average delay time to diagnosis of 8.1 years. Two main themes emerged: (1) experiences of living with endometriosis, and (2) impact of endometriosis on women’s lives, with 14 discrete categories. The results showed similarities and differences of the impact between the three age groups. The most highlighted impacts were on marital/sexual relationships, social life, and on physical and psychological aspects in all three age groups, but with different orders of priority. Education was the second most highlighted for the 16–24 years, life opportunities and employment for the 25–34 years; and financial impact for those 35 years and above. Conclusions Our findings show that endometriosis impacts negatively on different aspects of women’s lives. A better understanding of these findings could help to decrease the negative impact of endometriosis by guiding service delivery and future research to meet more effectively the needs of women and teenagers with this condition.
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                Author and article information

                Contributors
                Mike Armour:
                ORCID: http://orcid.org/0000-0001-7539-9851
                Role: ConceptualizationRole: Data curationRole: Formal analysisRole: InvestigationRole: MethodologyRole: SupervisionRole: Writing – original draftRole: Writing – review & editing
                Kenny Lawson: Role: ConceptualizationRole: Data curationRole: Formal analysisRole: MethodologyRole: SupervisionRole: Writing – original draftRole: Writing – review & editing
                Aidan Wood: Role: Data curationRole: Formal analysisRole: VisualizationRole: Writing – review & editing
                Caroline A. Smith: Role: ConceptualizationRole: Formal analysisRole: SupervisionRole: Writing – review & editing
                Jason Abbott: Role: ConceptualizationRole: Formal analysisRole: SupervisionRole: Writing – original draftRole: Writing – review & editing
                Praveen Thumbikat: Role: Editor
                Journal
                Journal ID (nlm-ta): PLoS One
                Journal ID (iso-abbrev): PLoS ONE
                Journal ID (publisher-id): plos
                Journal ID (pmc): plosone
                Title: PLoS ONE
                Publisher: Public Library of Science (San Francisco, CA USA )
                ISSN (Electronic): 1932-6203
                Publication date (Electronic): 10 October 2019
                Publication date Collection: 2019
                Volume: 14
                Issue: 10
                Electronic Location Identifier: e0223316
                Affiliations
                [1 ] NICM Health Research Institute, Western Sydney University, Sydney, New South Wales, Australia
                [2 ] Translational Health Research Institute (THRI), Western Sydney University, Sydney New South Wales, Australia
                [3 ] School of Women's and Children's Health, University of New South Wales, Sydney, New South Wales, Australia
                Northwestern University, UNITED STATES
                Author notes

                Competing Interests: I have read the journal's policy and the authors of this manuscript have the following competing interests: MA,CS, AT: As a medical research institute, NICM Health Research Institute receives research grants and donations from foundations, universities, government agencies and industry. Sponsors and donors provide untied and tied funding for work to advance the vision and mission of the Institute. This study was not specifically supported by donor or sponsor funding to NICM. JA: reports he is a committee member for the Endometriosis National Action plan implementation committee in Australia and the president of the Australasian Gynaecological Endoscopy and Surgery (AGES) Society. This does not alter our adherence to PLOS ONE policies on sharing data and materials.

                Author information
                http://orcid.org/0000-0001-7539-9851
                Article
                Publisher ID: PONE-D-19-20457
                DOI: 10.1371/journal.pone.0223316
                PMC ID: 6786587
                PubMed ID: 31600241
                SO-VID: c65ca559-3011-4ebf-8aee-7efad58a7592
                Copyright © © 2019 Armour et al
                License:

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                Date received : 20 July 2019
                Date accepted : 18 September 2019
                Page count
                Figures: 3, Tables: 1, Pages: 12
                Funding
                The authors received no specific funding for this work.
                Categories
                Subject: Research Article
                Subject: Social Sciences
                Subject: Economics
                Subject: Health Economics
                Subject: Medicine and Health Sciences
                Subject: Health Care
                Subject: Health Economics
                Subject: Social Sciences
                Subject: Economics
                Subject: Social Sciences
                Subject: Economics
                Subject: Economic Analysis
                Subject: Economic Impact Analysis
                Subject: People and Places
                Subject: Geographical Locations
                Subject: Oceania
                Subject: Australia
                Subject: People and Places
                Subject: Geographical Locations
                Subject: Europe
                Subject: Medicine and Health Sciences
                Subject: Public and Occupational Health
                Subject: Medicine and Health Sciences
                Subject: Women's Health
                Subject: Social Sciences
                Subject: Sociology
                Subject: Communications
                Subject: Social Communication
                Subject: Social Media
                Subject: Computer and Information Sciences
                Subject: Network Analysis
                Subject: Social Networks
                Subject: Social Media
                Subject: Social Sciences
                Subject: Sociology
                Subject: Social Networks
                Subject: Social Media
                Custom metadata
                Data Availability All relevant data are within the paper and its Supporting Information files.

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