The burden of Chronic Pelvic Pain (CPP): Costs and quality of life of women and men with CPP treated in outpatient referral centers

David W. Hutton, Mustafa A, Aida Mustafa, Patil S, Rathod S, Saira Rathod, Shrikhande G, Gautam Shrikhande, Arnold P. Advincula, Advincula A, Jessica Drummond, Drummond J, Peter K. Gregersen, Jason Hall, Hall J, Christine N. Metz, Alexandra Milspaw, Orbuch IK, Iris Kerin Orbuch, Peter J. Stahl, Stahl P, Stein A, Joshua Epstein, Allyson Shrikhande, Soha Patil
PloS one · 2023 · vol. 18(2) , pp. e0269828 · doi:10.1371/journal.pone.0269828 · PMID:36757947 · PMC9910684 · W4319657028
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This study analyzed healthcare utilization and costs for 607 patients with chronic pelvic pain, finding an average in-network cost of $29,951 per patient including diagnostics, treatments, and surgeries.

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This retrospective chart review analyzed healthcare utilization, cost burden, and quality-of-life restrictions among 607 women and men with chronic pelvic pain (CPP) who presented as new patients to an outpatient pelvic rehabilitation practice across 13 US locations between April 5 and June 18, 2021. The study combined EHR-derived prior utilization data (surgeries, diagnostics, treatments) with in-network unit costs from the FAIR Health Consumer database, and also collected self-reported quality-of-life and productivity-related measures such as pain VAS, absenteeism/presenteeism, ER visits, pain medication use, and participation in treatment modalities. The authors reported a total in-network cost burden of $29,951 per patient for services including treatments, diagnostics, and surgeries, with $15,750 for surgeries combined and $5,264.22 for diagnostics versus $8,937 for treatments. A stated limitation is that costs were calculated for in-network services using retrospective EHR documentation of utilization prior to presentation, without including medication costs tried before arriving at the clinic or productivity/work-hours lost in the formal cost totals. Relevance to endometriosis: the paper’s introduction and background explicitly cites endometriosis as a common CPP comorbidity (reported as 70% in CPP) and discusses existing endometriosis cost-burden literature, though the analysis itself focuses on CPP patients treated in a pelvic rehabilitation setting rather than isolating endometriosis-specific outcomes.

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Abstract

INTRODUCTION: Chronic Pelvic Pain (CPP) is a complex, multifaceted condition that affects both women and men. There is limited literature on the cost utilization the healthcare system and CPP patients incur. The purpose of this analysis is to characterize the overall healthcare utilization, cost burden, and quality-of-life restrictions experienced by CPP patients using data from an outpatient pelvic rehabilitation practice. METHODS: Healthcare utilization data was gathered by systematically reviewing and analyzing data from new patient visit progress notes stored in the clinic's electronic health records (EHR). We obtained in-network costs by using the FAIR Health Consumer online database. Overall costs were then calculated as the utilization times the per-unit costs from the FAIR database. Additionally, data on patients' visual analogue scale (VAS), absenteeism, presenteeism emergency room visits, usage of common pain medications, use of diagnostics, and participation in common treatment modalities was gathered. RESULTS: Data from 607 patients was used. The overall cost burden per patient for all surgeries combined was $15,750 for in-network services. The cost burden for diagnostics was $5,264.22 and treatments was $8,937 per patient for in-network treatments. CONCLUSION: Chronic Pelvic Pain was found to have a large cost burden of $29,951 for in-network services which includes treatments, diagnostics, and surgeries. This analysis sets the stage for future investigations involving data on costs of medications that patients have tried prior to presenting to us and costs associated with work hours lost.
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Intro

Chronic Pelvic Pain (CPP) is a complex, multifaceted condition caused by the complex interplay of gynecological, gastrointestinal, urological, musculoskeletal, neurological, and psychosocial conditions among others [ 1 , 2 ]. American College of Obstetricians and Gynecologists describes CPP as noncyclic “pain symptoms perceived to originate from pelvic organs/structures typically lasting more than 6 months” or cyclical pain that has “significant cognitive, behavioral, sexual, and emotional consequences” [ 3 ]. Under the umbrella of CPP lies a multitude of predisposing factors that contribute to the development of the CPP pain complex ( S1 Appendix ). About 14% percent of women experience CPP during their life [ 4 ]. Urological chronic pelvic pain syndrome (UCPPS) affects 2%-16% of men worldwide [ 5 ]. The most common comorbidities in CPP and their prevalence include endometriosis (70%) [ 6 ], adenomyosis (46%) [ 7 ], fibroids (48%) [ 8 ], post-partum pelvic pain (44%) [ 9 ], IC (89%) [ 10 ], bladder pain syndrome (61%) [ 6 ], irritable bowel syndrome (39%) [ 11 ], anxiety (66%), and depression (63%) [ 12 ]. There is limited literature on the cost utilization the healthcare system and CPP patients incur. Direct costs associated with CPP, related organ system dysfunctions, and the indirect costs of productivity loss, absenteeism, and missed wages are significant. A majority of the cost burden data in CPP involves Endometriosis, a chronic systemic inflammatory condition typified by lesions of endometrial-like cells outside of the uterus which globally affects 1 in 10 women [ 13 , 14 ]. Of the 170 million women suffering from Endometriosis [ 15 ], 71%-87% of patients suffer from CPP [ 16 , 17 ]. In 2018, an evaluation of the cost burden of Endometriosis included managing pain symptoms via pharmacological agents and surgical interventions and wages lost from absenteeism. Their calculations demonstrated overall healthcare costs per patient per year as $16,573 [ 18 ]. A study found that Endometriosis generated a cost burden of $22 billion in the US in the year 2002 (78.6%: direct, 21.4%: indirect) [ 19 ]. In 2010, the economic burden was estimated to be $69.4 billion by analyzing 12 tertiary centers in 10 European Countries (32%: direct and 66%: indirect) [ 20 ]. This multi-center analysis did not take into consideration the additional costs on the healthcare system of physical therapy, behavioral therapy, Emergency Room visits, or outpatient treatment procedures. Prolonged symptoms and delayed treatment and diagnosis were associated with higher healthcare utilization [ 20 ]. Quality of life and physical functioning is affected by endometriosis. A study analyzing 5,879 women diagnosed with Endometriosis discovered a positive correlation between symptom severity and hours of employment productivity lost: women with mild severity reported a weekly loss of 1.9 hours compared to 15.8 hours lost for severe symptoms [ 21 ]. Women also suffer from worsening of quality of life with CPP, especially combined with endometriosis, due to difficulties related to pregnancy and obstetric outcomes. Endometriosis patients have significantly higher risks of preterm birth, miscarriage, placenta previa, small for gestational age, and cesarean delivery than women without the disease [ 22 ]. A 2021 systematic review of women with CPP calculated the direct yearly cost per woman to be between $16,970 to $20,898, this includes healthcare, prescription, and indirect costs (lost wages and reduced productivity) [ 23 ]. For men with CPP, a Northwestern University outpatient urology clinic calculated annual direct costs (via Medicare rates and non-Medicare reimbursements) and lost wages due to absenteeism. Using non-Medicare rates, direct costs were $6,534 per person. Average indirect costs through lost wages totaled $3,248 per person; the modest value reflects the exclusion of productivity loss while at work [ 24 ]. There is a strong psychosocial impact as CPP patients are affected by anxiety and depression at strikingly higher rates than the general population. A study analyzing 57 articles found women with CPP to be twice as likely to have depression (18.9% versus the control of 9.3%). Another study demonstrated anxiety to be more than four times as likely in CPP patients (29.7% versus 7%) [ 16 ] Depression and anxiety negatively affect the prognosis of CPP and determine the onset of symptoms as they can contribute to central sensitization and “priming of the nervous system” [ 25 ]. Mental health diagnoses have been shown to decrease work productivity through absenteeism and presenteeism [ 26 ]. The associated costs of depression and anxiety across 36 large countries is calculated to be $925 billion due to the estimated time of 50 million days of work lost due to the onset of depression and anxiety [ 27 ]. CPP patients often obtain insufficient relief of their symptoms, consult many doctors without obtaining a precise diagnosis/ appropriate management for many years, and can have the impression of being abandoned by the medical profession [ 28 ]. Currently, the treatment of CPP and its related comorbidities is a multimodal interdisciplinary comprehensive outpatient protocol involving pharmacological agents, physical therapy, behavioral health, lifestyle modifications of diet, exercise, and sleep as well as ultrasound guided peripheral nerve blocks, trigger point injections and/or surgical interventions if conservative management fails to resolve symptoms [ 29 , 30 ] CPP represents a significant individual and societal burden and although researchers discuss the substantial psychosocial and economic impact, a precise figure is difficult to determine due to the lack of multidisciplinary studies and limited understanding/consensus regarding CPP among researchers and health providers [ 31 ]. The purpose of this analysis is to characterize the overall healthcare utilization, cost burden, and quality-of-life restrictions experienced by CPP patients using data from an outpatient pelvic rehabilitation practice.

Results

We initially selected 742 CPP patients from our records who were seen as new patients in 2021. All patients were assessed for eligibility whereas 27 were excluded because they did not report the duration of pain or discomfort; and 108 were excluded for reporting pain with a duration of less than 6 months. This concluded in 607 patients analyzed for this study. Patient demographics, including sex at birth, and age, did not influence eligibility of inclusion ( Fig 1 ). The demographic breakdown of the patient pool resulted in 74% female (450), and 26% males (157), with the age range between 14–88 years old. Less than 1% of the patient pool was younger than 18 years old; 68% were between 18–44 years old; 20% were between 45–60 years old, while 12% were above 61 years old ( Fig 2a ). The average Visual Analogue Score (VAS) score amongst all patients at the initial New Patient visit was 7.1 on a scale from 0–10. Every patient reported pain or discomfort with CPP having started greater than 6 months to being seen, while 50% of patients reported pain or discomfort having started 5 or more years ago. Amongst these longer-term patients, 10% of patients reported pain or discomfort starting more than 15 years ago. A breakdown of the average duration of pain and associated VAS scores can be found in Fig 2b . Furthermore, since this patient population is prone to comorbidities and overlapping pain syndromes, we analyzed the comorbidities in our patient population and found 93% of patients suffer from at least one comorbidity and the highest frequency of comorbidities are: Anxiety/ Depression (71% among patients with at least one comorbidity) and Endometriosis (24% among women). A complete list of comorbidities reported by patients when they presented to us as New Patients is shown in Fig 2c . Non-pharmacological treatments are usually recommended first due to their ease in implementation and potential for long term maintenance compared to pharmacological and surgical options. Pelvic floor physical therapy for internal and external myofascial release, visceral mobilization, nerve gliding, as well as balance, movement, and neuromuscular re-education is recommended as first line therapy [ 35 ]. This is supported by our data which shows physical therapy was the most common treatment our patients had prior to consulting with us. 46% of patients attended at least 1 physical therapy session ( Table 1 and Fig 3a ). Out of this patient pool, each patient averaged 24 completed physical therapy sessions prior to being seen. On the higher end, one patient reported having completed 500 physical therapy sessions while still experiencing pain and discomfort with CPP. Details on the number of patients who tried specific numbers of sessions of physical therapy can be found in S2 Appendix . 77% of patients had undergone at least one diagnostic procedure prior to visiting our clinic. A breakdown of number of patients who had each procedure is shown in Table 2 . The three top diagnostics performed were Pelvic Ultrasound with 57% of patients having undergone one, Pelvic MRI with 40%, and exploratory surgery with 13%. In terms of highest utilization, 2 patients had reported having undergone 25 colonoscopies, 1 patient reported having undergone 30 esophagogastroduodenoscopies (EGD), and 1 patient reported having undergone 40 cystoscopies prior to visiting our practice. This analysis is shown in S3 Appendix . * Refer to S4 Appendix ** Refer to S3 Appendix Out of 450 female patients in the pool, 137 reported having undergone at least one female specific surgery, representing 30% of the female participants. In total, 210 counts of female surgeries were reported. 58% of these patients had undergone an endometriosis related surgery, including endometriosis ablation or excision. The second highest undergone surgery was a hysterectomy, with 40% of this pool. Of the 157 male patients, 4 reported having undergone the male specific surgeries. Of the gender-neutral surgeries, 89 patients reported a past surgery. 25% of these patients had undergone an inguinal hernia repair, while the second highest surgery count was a hemorrhoid surgery with 20% of the patient pool (17 patients). Table 2 shows these results. Costs are grouped in three categories: treatments, diagnostics, and surgeries. Out of the 281 patients who had tried pelvic floor physical therapy and averaged 24 sessions each, the total cost burden was $8,937 per patient for in-network treatments. This was found by multiplying the average treatment sessions with the number of patients who tried pelvic floor physical therapy and the cost per CPT in-network as shown in Table 2 . The cost burden for the 466 patients who had undergone the diagnostics was $5,264.22. This is the average per person who have had at least one diagnostic. This was calculated by multiplying the number of patients associated with each diagnostic procedure and its cost per CPT code. For diagnostics which were undergone more than once, the cost per CPT code, number of patients, and frequency were multiplied. This can be found in S3 Appendix . The cost burden per patient for female specific surgeries was $16,800 for in-network services. For male specific surgeries, the cost burden was $11,977 for in-network services. The cost burden per patient for all other surgeries was $13,443 for in-network services. The overall cost burden per patient for all surgeries combined was $15,750 for in-network services. The overall cost burden per patient in this pool resulted as $29,951 for in-network services. This is divided into treatments, diagnostics, and surgeries as shown in Table 2 . A distribution of the costs incurred for in-network services by each patient encompassing treatment, diagnostics, and surgery costs is shown in Fig 4 . A breakdown of this by category can be seen in S5 Appendix . The lowest total cost was incurred by 2 patients at $202 each for only undergoing the diagnostic of a Semen Culture. They reported experiencing pain for 5–10 years before presenting to us. The highest cost burden was $305,286. This patient reported having pain for more than 15 years and underwent 1 hysterectomy, 1 MRI, 1 exploratory surgery, 50 pelvic floor physical therapy sessions, 1 cystoscopy, 30 endoscopies, and 25 colonoscopies.

Conclusions

In conclusion, Chronic Pelvic Pain was found to have a large cost burden of $29,951 for in-network services which includes treatments, diagnostics, and surgeries. These in-network services are often redundant and unnecessary. This leads to an increase in healthcare costs for CPP patients while simultaneously negatively affecting their quality of life and functional capacity. This publication highlights the societal and individual cost burden of CPP in order to encourage physicians to understand CPP and its multifaceted complex nature so that patients can be treated with better outcomes and minimize the costs associated with systematic healthcare utilization from delayed diagnosis and treatment. A streamlined interdisciplinary multimodal approach to a more rapid diagnosis and treatment of CPP patients with a clearly delineated treatment algorithm will improve the quality of life of CPP patients and decrease the current dis-utilization of the healthcare system.

Materials|Methods

This analysis evaluates costs CPP patients incur before they present to an outpatient pelvic rehabilitation practice treating CPP. The practice has 13 locations in large metro areas across the United States. To evaluate costs, we gathered healthcare utilization data from patient medical records and histories and combined the utilization data with unit costs. This was a retrospective chart review of medical records. All data was fully anonymized with medical record numbers prior to our research team having access to the data. The systemic utilization of specific medical and surgical treatments within the patient pool was recorded by our physicians while collecting patients’ medical history at new patient visits. The medical and surgical treatments identified are procedures patients have undergone prior to presenting to the pelvic rehabilitation clinic. So, healthcare utilization data was gathered by systematically reviewing and analyzing data from new patient visit progress notes stored in the clinic’s electronic health records (EHR). In addition, we reviewed the progress notes to obtain information regarding the indirect costs of CPP and related comorbidities, including those associated with reduced quality of life measures, reduced work and school productivity, and increased disutility of care. In this paper, disutility of care refers to usage of common pain medications prescribed for pain management, including NSAIDs and Opioids, and ER usage. This information is not a direct factor in analyzing the cost burden associated with CPP in this paper, but rather reviewed to facilitate supplementary discussion around common indirect costs incurred by CPP patients. Patients were selected as new patients first seen from between April 5 th 2021 to June 18 th 2021. Patients were deemed eligible if they reported a duration of pain or discomfort for 6 months or longer. Patients medical history data was exhaustive, all previous surgeries, diagnostics, and treatments tried were recorded and used in this analysis. Previous medications and ER visits were limited to the past 12 months. To quantify quality of life challenges our patient pool suffered from prior to presenting as New Patients, we analyzed their visual analogue scale (VAS), absenteeism, presenteeism emergency room visits, usage of common pain medications, use of diagnostics, and participation in common treatment modalities. The VAS is a self-reported measure which asks, “How would you rate your average pain or discomfort on a scale of 0–10?”. The patient reports the average pain they experienced in the past week before presenting as a new patient. Absenteeism and presenteeism are determined by the following questions: “How many days of work did you miss in the past 3 months due to your pain or discomfort?” and “On average, how many hours a week is your work productivity affected due to your pain or discomfort?”, respectively. Although associating costs with absenteeism and presenteeism is not conducted in this analysis, we gathered this data to calculate the hours our patients are losing. Data on ER visits is contained to the past 12 months and are only CPP- specific ER visits. Data on medications are also limited to the past 12 months while previous surgeries, diagnostics, and treatments data was lifetime. After overall procedures were identified, seventeen types of surgeries were selected for analysis within this patient pool. Of these surgeries, nine were female specific, two were male specific, and six were gender neutral. These surgeries were selected given they are reported as common surgeries undergone by CPP patients [ 32 , 33 ]. Moreover, ten types of diagnostics and one distinct previous treatment were selected for analyzation. These diagnostics vary across specialties, including Urology, Gynecology, Colorectal, amongst others. Pelvic floor physical therapy was selected as the treatment to be analyzed as it was most utilized by our patient pool. We obtained in-network costs by using the FAIR Health Consumer online database. FAIR Health is an independent, national nonprofit organization which provides information about healthcare costs. Their database includes more than 34 billion private health care claims and 36 billion Medicare claims for 10,000 services in all areas of the United States. FAIR Health uses this data to estimate what providers charge and what insurers pay [ 34 ]. Because FAIR Health requires input of geographic location to determine cost estimate per CPT code, we used 10001 (New York, New York) given our patient pool comes from large metropolitan areas, with the majority coming from New York, New York. The CPT codes along with the costs associated can be found in Table 1 . Overall costs were then calculated as the utilization times the per-unit costs from the FAIR database.

Supplementary Material

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