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Patients face many obstacles to effective treatment for pelvic floor disorders.
Pelvic Floor Recap
In my last blog post, I talked about pelvic floor disorders (PFDs), a fairly common problem affecting mostly women but also some men. These disorders can vary in cause and expression, though common symptoms include urinary incontinence, pelvic floor pain, and sexual dysfunction. Often the dysfunction arises because of a muscle spasm, or failure of the pelvic floor muscles to relax as needed. Confusion about PFD is widespread among patients and providers alike, which likely stems from the fact that reasons for dysfunction in pelvic floor muscles “can be urologic, gynecologic, gastrointestinal, musculoskeletal, neurologic, or psychologic in nature.” In other words, this is just the type of acute, straightforward problem our healthcare system is designed to handle! (Cue sarcasm.)
Sarcasm aside, we should care about PFDs because of its increasing prevalence, likely due to a host of factors including rising rates of obesity and risk factors associated with an aging population. As an increasing number of women and men present symptoms of PFDs to healthcare providers, we should strive to prepare providers to care for these individuals. This would encompass helping providers understand the wide range of possible symptoms associated with PFD, and how to make referrals to specialists for further consultation and diagnosis. But we are not there yet. For example, some providers don’t view PFDs as a muscular issue and may not go beyond prescribing a pain medication to improve quality of life. These medications won’t address the underlying problems if given in isolation, and they can have a host of negative side effects including addiction. Other providers may not know quite where to send patients for further consultation, which is reflected in reports that patients may have to see between 5 to 10 doctors before receiving their diagnosis of PFD.
Thought Experiment
Let’s just think about what visiting 5 to 10 doctors before a diagnosis might mean for a patient. First, there’s the investment of time: assuming a patient sees 1 doctor every 2 weeks (which few of us could manage)—this could mean 2.5 to 5 months before she gets a diagnosis that points to effective treatment options, while simultaneously suffering from confusing symptoms which are likely affecting her daily activities and closest relationships. She probably needed to spend a conservative 2 hours on each visit, including travel time, so she’s just lost between 10 and 20 hours of productivity or take-home pay as well. This is likely over and above other expenses such as transportation and childcare. And if her copay per visit is $20, like the copay with my employer’s plan, she’ll have spent between $100 to $200 on out-of-pocket expenses alone. If she’s employed and her work hours are not flexible, I can only imagine the difficulty of getting an accurate diagnosis, and how many patients might give up early.
Challenges to Receiving an Optimal Treatment
Each case of PFD can be quite unique depending on patient history, which is why current opinion dictates that the most effective evaluation and management of PFD patients likely requires a team-based approach. Commonly used treatments can be broadly summarized in 3 categories: pharmacological, physical therapy, and self care. In more extreme cases, and depending on the cause, surgery may also be considered. Pharmacologic interventions may be a “quick fix” and help with some of the symptoms, but can have limited effectiveness in the long run and might have side effects. Physical therapy, which carries little to no side effects, can be an effective (albeit time-consuming) treatment. Pelvic floor muscle training, similar to that performed in physical therapy, has also proven effective in preventing urinary incontinence, prior to and after delivery, in pregnant women.
A peeve though is that a typical round of physical therapy requires time and patience, possibly 2 months to a year. And the effects of such treatments don’t always persist in the absence of religious self-care. So PFD could be categorized as a chronic condition, one which may require routine follow ups to manage effectively.
The Role of Insurance
While physical therapy has wide applications for many conditions, it requires time with specialized providers, and coverage for physical therapy benefits varies based on a patient’s health insurer. Some insurers consider physical therapy medically necessary with a provider referral (and often on the condition that a patient is showing improvement). Other insurers place a cap on the number of visits they will cover per year, though this varies by state; in Maryland, for example, 30 visits per year must be covered if these visits are deemed medically necessary. Still other insurers place annual caps on the dollar amount spent on physical therapy per year: for Medicare patients in 2015 this cap for physical therapy and speech-language pathology is $1900 and includes a 20% coinsurance.
Physical therapy is resource-intense, and these caps on visits and spending (particularly for public programs like Medicare) are commendably designed to preserve resources for those who need them most. But for those with PFD, insurance benefit design may present a barrier to receiving effective treatment. Given that roughly 40% of women ages 60 to 79 years, and 50% of those over 80 years of age are estimated to have a PFD, many women in Medicare’s age group may need physical therapy for PFDs and therefore be sensitive to physical insurance coverage caps. Women in this age group are also more likely to need physical therapy for a host of other reasons, such as recovery from surgery or falls.
The diagnosis of PFD itself (which may manifest in a claim as a range of different ICD-9 codes) is not singular, and presents a challenge for insurers on which condition may require which “medically necessary” treatment. Additionally, physical therapy includes a range of specific treatment strategies, and as newer and often more effective methods emerge, insurance benefits may need time to catch up. This is the case with biofeedback for example, which shows symptom improvement in 75% of patients. The technique is effectively “covered” by many insurers, including Medicare, but sometimes in a convoluted fashion: by first denying the claim, and then covering it if sufficient paperwork is submitted to document clinical need.
The Problem With Convoluted Processes Is Simple: They Are Convoluted
If a physical therapy clinic forgets to submit paperwork, the patient may be denied coverage and receive a bill. Some of these oversights are rectified with phone calls from the patient (and perhaps the medical bill bargaining advice laid out in The New York Times), but coverage for physical therapy in particular can be so tricky that some urology clinics suggest patients write letters to their insurers to increase likelihood of reimbursement. This seems like an unnecessary burden to place on patients, especially given the intimate and often embarrassing symptoms associated with PFD.
Patients With Pelvic Floor Disorder Have a Long Road Ahead of Them
Getting the correct diagnosis can take time and persistence. While the research around effective treatments is gaining momentum, treatment itself can take months of repeated visits to specialized physical therapists and insurance benefit design can sometimes add an additional obstacle for patients. Low rates of awareness and high stigma associated with PFDs complicate this entire process. As providers and researchers interested in improving care, we should be the ones spreading the word on PFDs, identifying ways to pinpoint effective treatments, and aligning insurance benefits to ensure patients receive these treatments with minimal embarrassment and difficulty.
In the next post, we’ll leverage several anecdotal experiences by both patients with PFD and providers to better understand how these problems are perceived by some of our most valuable stakeholders.