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

Mike Armour, Lawson K, Kenny Lawson, Wood A, Aidan Wood, Caroline Smith, Caroline A Smith, Smith CA, Jason Abbott, Abbott J
PloS one · 2019 · vol. 14(10) , pp. e0223316 · doi:10.1371/journal.pone.0223316 · PMID:31600241 · PMC6786587 · W2979960321
article OA: gold CC0 ⤵ 142 in-corpus citations
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This Australian survey found that chronic pelvic pain, with or without endometriosis, significantly burdens the economy, primarily due to productivity loss, which increases substantially with pain severity.

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This national online survey and cost-of-illness analysis used the retrospective patient component of the WERF EndoCost tool to quantify one-year direct healthcare costs, direct non-healthcare carer costs, and indirect productivity losses among 407 Australian women aged 18–45 with either surgically confirmed endometriosis (n=340) or chronic pelvic pain without a current endometriosis diagnosis (n=67). Costs were extrapolated to the Australian reproductive-aged population using published prevalence estimates, and sensitivity analyses varied productivity assumptions, unit costs, and prevalence, with results reported in international dollars. The key finding was that economic burden was substantial in both groups, with the majority (75–84%) driven by productivity loss; pain severity showed the strongest relationship to productivity costs, with reported costs increasing up to a 12.5-fold difference from minimal to severe pain. Relevance to endometriosis: the study directly measures the cost burden of endometriosis and also compares it to non-endometriosis chronic pelvic pain in the Australian context.

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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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Intro

Chronic pelvic pain (CPP) is pain in the pelvis of greater than six months duration, and is severe enough to cause functional disability or require medical intervention [ 1 ]. Common causes of chronic pelvic pain include endometriosis, adenomyosis, chronic infection, and functional disorders such as irritable bowel syndrome or interstitial cystitis. Endometriosis is the most common cause of CPP [ 2 ] with 24% to 40% of women with CPP having a diagnosis of endometriosis [ 3 , 4 ] and whilst prevalence for CPP and endometriosis are variably quoted, all types of CPP range from 5.7% to 26.6% [ 5 ] of women. Real world estimates of endometriosis prevalence are between 5% [ 6 ] and 10% [ 7 ] of the reproductive aged female population. A large multi-centre study across Europe, UK and the USA found that the total cost per woman with endometriosis per year was €9579 with the bulk of costs (€6298) being due to absence from work [ 8 ], with the economic burden of endometriosis being similar to or higher than other chronic disease burdens such as heart disease and diabetes [ 8 ]. Despite the majority of women with CPP not having a diagnosis of endometriosis [ 3 , 4 ], there are few data on the cost of illness of non-endometriosis chronic pelvic pain. The economic impact may vary significantly between those with endometriosis and those with non-endometriosis related CPP due to the significant surgical interventions that often occur in endometriosis [ 9 ] however there is currently no economic analysis to support this hypothesis. The aim of this survey and cost of illness (COI) analysis was to determine the economic impact of both women having chronic pelvic pain either with and without a current diagnosis of endometriosis on healthcare costs, employment related costs and other costs related to childcare and household maintenance for women in the Australian healthcare context. Whilst it is recognized that health and economic systems differ significantly between countries, even within close geographical areas [ 10 ], assessing the impact to the individual and at a societal level may help to guide policy and prioritisation for healthcare.

Results

407 valid responses were received. 340 of these women had endometriosis (84%) and 67 (16%) had chronic pelvic pain without a current diagnosis of endometriosis (hereafter referred to just as CPP). Table 1 outlines the characteristics of the sample that were used in the costing analysis. The cost of illness was broken down into three categories; health related costs, productivity costs and cost for carers. The breakdown of costs in each category is outlined in Fig 1 for endometriosis and Fig 2 for CPP. Complete data for the cost breakdowns for both endometriosis and CPP is available in S1 Table . Total health related costs were relatively stable across all age groups and accounted for 12.5% and 19% of overall costs in endometriosis and CPP respectively. No patient reached the annual out of pocket fee limit of $1,521.8. The majority of the costs in both women with endometriosis and women with CPP were related to productivity costs, comprising 83.6% of total costs in women with endometriosis and 75% of total costs in women with CPP. Carer related costs were small, 3.8% of the total in women with endometriosis, and 5.7% in women with CPP. For endometriosis, average per person, per year costs was estimated to be Int $ 2640 (95% CI 2158 to 3272) for total health costs, $17484 (95% CI 16407 to 18679) for productivity costs and $774 (95% CI 433 to 1262) for carer costs, for a total of $20,898 (95% CI 18,999 to 23,213) for all ages combined. For women with CPP, average per person, per year costs was estimated to be Int $ 3215 (95% CI 2528 to 4234) for total health costs, $12,789 (95% CI 10,534 to 16,068) for productivity costs and $966 (95% CI 393 to 1499) for carer costs, for a total of $16,970 (95% CI 13,540 to 22,193) for all ages combined. The major point of difference between the two cohorts were the social support structures; with women with endometriosis having mostly in-kind support (87%) with regards to carers, while women with CPP reported they did not receive any in-kind support, and all carer related costs were paid. Fig 3 and S2 Table outline costs by pain score in the women with endometriosis. The analysis was conducted for women suffering from endometriosis only, and for all age categories together. There were insufficient numbers to divide into age groups, or to repeat the analysis for chronic pelvic pain. Pain scores showed a strong relationship to overall cost ranging from Int $ 3,805, (95% CI 1617 to 5410) in women with minimal pain to Int $ 23987, (95% CI 21492 to 26774) in women with severe pain, over a 6-fold increase between minimal pain to severe pain. The magnitude of specific changes between minimal pain and severe pain were an approximately 2-fold increase in health-related costs and out of pocket costs, a 12.5-fold increase in productivity costs, and a 3-fold increase carer costs. The total female population in Australia aged between 18–45 was 4.80 million in 2017 [ 16 ], and the total economic burden per year assuming a 10% prevalence in the reproductive aged population was 6.50 billion Int $. In the sensitivity analyses, where lower bound estimates were generated the economic impacts fell substantially, as expected. At a per person level, when a Frictional Cost Approach (FCA) was used (rather than the Human Capital Approach) and unit costs were reduced by 10%, then average per person costs were Int $ 8,116 (95% CI 7,056 to 8,877) for endometriosis and Int $ 8,563 (95% CI 7230 to 9765) for CPP. Regarding the population impact, if a prevalence rate of 5% (rather than 10%) was also used, then total costs were 1.37 billion Int $.

Conclusions

This research clarifies that endometriosis and chronic pelvic pain have considerable impact for the women affected; the health sector; the wider economy and to carers. Given the huge financial burden of endometriosis and CPP, there is an urgent need for accurate epidemiological studies to assess the true prevalence rate of endometriosis, and for substantive longitudinal studies that determine these economic impacts with greater accuracy to guide policy at a national and international level. The inclusion of economic evaluations alongside future intervention studies to assess cost effectiveness, will allow a greater understanding of how the economic burden is reduced, including improvements in quality of life for women suffering with endometriosis and other forms of CPP.

Materials|Methods

The WERF EndoCost tool was developed by the World Endometriosis Research Foundation (WERF) EndoCost Consortium, and the original protocol consists of validated prospective hospital questionnaires and both retrospective and prospective patient questionnaires [ 11 ]. Our study used the retrospective patient questionnaire component of the WERF EndoCost tool that was modified to an Australian demographic and healthcare context and hosted on SurveyMonkey ( www.surveymonkey.com ). The tool consisted of ninety-nine questions including direct healthcare costs (e.g. costs of medications and doctors visits), direct non-healthcare costs (e.g. transportation costs), and indirect costs of productivity loss. Total time to complete the survey was between 30–45 minutes. Modifications were made to income and ethnicity to adapt to Australian norms as per the Australian Bureau of Statistics [ 12 ]. Brand names for pharmaceuticals were modified to reflect their Australian brand names. The survey tool is available as S1 File . Analysis on other components of the WERF EndoCost tool (such as time to diagnosis, pelvic pain scores etc.) will be published separately. The survey link was distributed via the social media platforms (Facebook, Twitter and Instagram) of Endometriosis Australia, EndoActive and Pelvic Pain Foundation of Australia. The total combined reach of these organisations on social media was just over 35k followers. Each organisation made two social media posts regarding the survey, the second post 3–5 weeks after the first. The survey link was active from February 2017 to April 2017, for a total of eight weeks. Data collection was closed once there had been no new responses for five days. Ethical approved was provided by the Western Sydney University Human Research Ethics Committee, approval number H12019 . Women were eligible to participate in the survey if they were aged 18–45, currently living in Australia and either had a surgically confirmed diagnosis of endometriosis, or if they had chronic pelvic pain from any cause. Chronic pelvic pain was defined as pain in the pelvis for at least six months that caused the woman to seek medical attention and if they had either; a laparoscopy that did not show evidence of endometriosis or had not undergone a laparoscopy at the time of survey. All data collected was from participants themselves. Following standard practice in cost-of-illness studies, this study measured costs rather than test a specific hypothesis and so no sample size calculation was necessary [ 11 ]. In Australia, there is a mixed public and private health care system. All residents have automatic access to the public system comprising: (i) primary (general practitioners (GP), allied health and selected pharmaceuticals), and (ii) secondary care (hospital, in-patient and out-patient). The government provides subsided care, and includes a co-payment mechanism resulting in patient out-of-pocket costs. The purchase of private insurance does not preclude using public hospitals. The assumption in this study was that patients visited public providers. A ‘societal perspective’ was adopted, incorporating (i) health sector impacts, often termed ‘direct costs’, (ii) productivity impacts, often termed ‘indirect costs,’ using the human capital approach, incorporating multiplier impact [ 13 ] and (iii) household costs (out-of-pocket costs, and in-kind carer time costs). This was a prevalence study and estimated costs regardless of time of diagnosis, if known. The immediate aim was to estimate average per person costs, and separately, for (i) women with a diagnosis of endometriosis, and (ii) women reported suffering from general chronic pelvic pain, without an associated diagnosis. The average cost per person was estimated and for the age categories of 18–24, 25–30, 31–38 and 39+ years. Analysis was conducted by endometriosis and chronic pelvic pain separately. Mean and 95% confidence intervals were reported derived using bootstrapping with 5,000 replications [ 14 ]. An a priori decision was made to explore whether average costs differ by pain severity. The survey asked women to rate pain from 1–10, and then was collapsed into four categories: ‘Minimal’ (1–2), ‘Mild’ (3–5), ‘Moderate’ (6–8), ‘Severe’ (9–10). Women were then stratified, and the costing analysis as described above was repeated. Results from the survey were extrapolated by multiplying: (i) estimates of the prevalence of endometriosis using a rate of 10% [ 7 ], the most commonly accepted estimate (ii) the number of women in each age category (iii) average costs by age-category. An ‘analysis of extremes’ was conducted, where the key structural assumptions of the main analysis were altered to generate lower bound estimates. First, the Human Capital Approach was substituted with the Frictional Cost Approach where productivity impacts were capped at 3 months with the assumption of replacement in the workforce. Second, to account for potential uncertainty regarding unit costs estimates all estimates of costs and productivity estimates were lowered by 10%. Third, the population prevalence of endometriosis and CPP was then lowered to 5%. Costs were estimated for one year and in AUD $ 2017 prices. Following standard practice, to enable comparison of the economic burden between countries, costs were converted to International dollars (Int $) using purchasing power parity (PPP) conversion factors so that Int $1 is equivalent to US $1 in the United States [ 15 ]. S2 File further details the methods used.

Supplementary Material

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endometriosischronic_pelvic_pain

MeSH descriptors

Chronic Pain Cost of Illness Endometriosis Internet Pelvic Pain Surveys and Questionnaires Adolescent Adult Australia Australia Chronic Pain Endometriosis Endometriosis Female Humans Pelvic Pain Severity of Illness Index Young Adult

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