Many of the calls and e-mails we receive at NAFC involve the anxiety that consumers feel over whether to seek a second or even third opinion from a doctor.  At NAFC, we work hard at reassuring them they are not betraying their doctors when they ask additional questions or even when they seek additional opinions from others.  Some consumers even express concern they will be mistreated purposely by their doctors if they are perceived as being disloyal.  Such anxiety only adds to the angst patients already feel over their symptoms and their options for treatment.  Myths abound among the public, particularly about incontinence.

The best time to seek multiple provider input is on the front end as diagnosis is being determined, when a care plan and a course of treatment are being discussed and formulated.  Depending on how widely treatment regimens may vary and how serious and permanent the adverse side effects might be, it may be advisable to seek additional diagnostic opinions even in circumstances where a patient feels happy with his or her doctor.  The more rare the circumstances, the more this is true, especially where treatment options are still relatively young and underdeveloped.

Moreover, in continence care, there is a wide variety of clinical disciplines involved in the care equation.  Each of these categories of providers approaches symptoms from a slightly different perspective and certainly with very different training, often with a different tool box of options to offer.  And one may be more appropriate than another at one stage versus another in the timeline of your experience with symptoms of bladder and/or bowel control problems.

Another increasing reason for seeking additional opinions have to do with the aging population now living with multiple, chronic illnesses.  Today, we face the risks of drug interaction and the tradeoffs necessary in treating one condition or disease over another.  While surgery might be an ideal option for a patient with severe stress urinary incontinence, that same patient with obesity, advanced diabetes and congestive heart failure might present a different set of factors for all the doctors involved.

A final reason for sourcing different opinions has to do with cost itself. Doctors have a limited sense of the full cost of any treatment plan they are recommending, in part because they can't possibly be current on their knowledge of all the different health insurance plans and coverage a patient might have. Some patients have high deductible plans, while others have more traditional indemnity plans. Some patients have government plans, such as Medicare, and others have no insurance whatsoever. This can have a profound and important impact on diagnostic and treatment options. Doctors and patients do not have a history of easily engaging in conversation on this topic. In fact, doctors traditionally have shunned discussion about money as if it tainted their medical judgement. However, times have changed?

Lastly, there is human chemistry itself. A person's ability to communicate effectively and comfortably may well differ from one doctor to the next. Only the patient can be the judge of when the communication is incomplete, and only the patient deserves to make that judement.

So the next time you feel in your gut that your doctor hasn’t heard you or isn’t responding as you think he or she should, take a time-out, seek out another opinion, and find another qualified expert – through a friend or family member, through the healthcare plan providing insurance, or through a patient advocacy group like NAFC if your problem is bladder and bowel control – so that you’re satisfied with the ultimate treatment regimen and care plan.

Nancy Muller
Executive Director

CaringBridge® was created twelve years ago when a friend of the founder gave birth to a premature baby and needed help communicating with her family and friends.  Instead of making dozens of repetitive phone calls for her friend, CaringBridge was created.  No doubt, it represents one of the first electronic social networks.  Today, over 155,000 CaringBridge sites have been launched, and in the last 12 months alone over 30 million visitors have reportedly logged on to offer emotional and social support during health crises of loved ones.  Since its inception, nearly one billion visits have cumulatively been made to these personal web sites.  The electronic community is operative in all 50 states and more than 215 countries and territories across the globe.  It is a 501(c)(3) not for profit corporation that functions as a web service of connectivity among people during a critical illness, treatment or recovery. Warm in design, brilliantly simple, and easy to navigate, the organization’s site was prominently featured recently1 on cnnhealth.com.

We all need caring and connection.  When confronted with overwhelming problems we can’t explain or solve by ourselves, we need the understanding, empathy, and advice of others as we seek suggestions, experience-based counsel, or simply an ear.  This is how we are propelled forward as humans to persevere through any adversity, whether it is life-threatening or chronic, temporary or permanent.

Recently at NAFC we completed a nationwide, online survey of women ages 40 – 65 with symptoms of overactive bladder (OAB).  Among the findings, was the revelation that half (49%) of all such patients don’t believe they will EVER completely manage their OAB symptoms of urgency and frequency threatening their freedom and quality of life.  That’s why NAFC exists, to be a resource and a source of connectivity. Not unlike CaringBridge, we offer via our site a Forum where visitors can privately pose questions, express concerns, and exchange advice. To participate, you must register with us and agree to have your postings monitored by our Health Educator on staff so that only appropriate exchanges take place in this otherwise public domain.  Click on http://www.nafc.org/forum/ to be a part of it if you feel you can benefit or help others with their challenges of bladder and bowel control problems.

To learn more about the OAB survey results, visit http://www.nafc.org/news/84/126/New-National-Survey-Shows-That-OAB-Symptoms-are-Pervasive-and-Difficult-to-Manage/.   You may find yourself mirrored in the lives of the respondents.  And get connected with others to help you.

Nancy Muller
Executive Director

1 Accessed at http://www.cnn.com/2009/HEALTH/06/15/social.support.benefit/index.html on June 17, 2009

In November, the Federal Drug Administration (FDA) called a hearing to discuss issues pertaining to  disclosure rules for drug manufacturers on the Internet.  In 2008, the pharmaceutical industry spent $4.4 billion on television and in print magazines combined, but just over three percent of this amount was spent on Internet advertising.  Industry is eager to expand use of the Web to advertise its branded prescription drugs, in hopes of driving still more consumers to their doctors with symptoms and thus demands for advertised medications.  A looming obstacle lies in the lack of FDA guidance about how to apply existing drug-marketing rules to new-age media and marketing.  At the urging of Pfizer and others, the FDA agreed to host the hearing to air views both from patient safety groups, industry, and policymakers.

The FDA has long established strict rules for drug advertising requiring disclosures about the advertised condition and potential side effects from the promoted drug.  The federal agency says that certain aspects of online marketing such as social media are not sufficiently covered by existing regulations and thus could warrant additional guidance. The problem is:  Just what is missing and what additional regulations are needed?  Are links enough for the manufacturer, when vast numbers of individuals are sharing information by forwarding messages on Twitter, Facebook and LinkedIn?  How can this all be monitored or best controlled efficiently and effectively by the government?

Or should it be? A more fundamental question is whether control and surveillance are appropriate and within the realm of U. S. Constitutional freedoms?  Consumer safety watchdog groups caution that links are not only insufficient, they are downright dangerous.  They maintain that post-market surveillance, already inadequate on the FDA’s part, will become impossible. Meanwhile, an even more difficult question is whether pharmaceutical brand teams should be held responsible for consumer-created content on YouTube and other electronic social communication sites, for false information about their products.

Plenty of companies are already looking the other way, pushing the envelope with unofficial, satellite sites that are brand-specific, yet separate from the corporate "mother" sites altogether. Companies are funding totally unbranded sites intended to draw attention to the condition, in hopes of driving consumers to search for solutions in the form of prescription drugs and even surgical devices. Patient advocacy organizations are hardly innocent bystanders, selling out pages or even sections of their proprietary site to companies with branded or exclusive but still non-branded messages about a condition and a remedy. The wording and thus the messaging are often crafted entirely by the sponsoring companies.

Where does the Cirque du Soleil end?  Do European countries have the right equation, by barring all commercial advertising and promotion of drugs, keeping costs lower so drug prices are far less than they are in the U. S.?  Has our American economy, so dependent for decades on fueling demand for all consumer products and services by granting freedom of press without restriction, lost its control over healthcare costs as well as patient safety as a result of uncontrolled branded marketing?

In the end, the answer lies in public health education and elevating the health literacy of our citizens.  For it is only in being an informed and watchful consumer that one can know the questions to ask of doctors and nurses, the information to gather prior to being diagnosed or treated, and how open to leave oneself to claims made in the advertising messages.  Who are our nation’s healthcare educators?  You, our readers, our healthcare professionals, and our providers.  Not a friend’s Twitter, not a forwarded YouTube video, not a faceless blog.   All of us healthcare professionals, those of us serving as public educators and patient advocates and those serving as healthcare providers of diagnosis, treatment, and care, are responsible for educating the public.

The age of the Internet has augmented, not shrunk, the scope of our individual responsibility to our patients and to the public at large.  It has rendered more complexity, not greater simplicity, in how we respond and what we must initiate each and every day in our communications with others, whether they are face to face, by telephone, by e-mail, by Web sites, or by video and television.  It’s a challenge we must accept, hand in glove with our fundamental rights and freedoms as U. S. citizens.

Nancy Muller
Executive Director

This happened because at NAFC, in an effort to contain spiraling health care benefit expenses, we have in recent years switched to a high-deductible coverage plan that includes a health savings account to which employees contribute pretax dollars for paying those expenses applied against the deductible. In exchange for their exposure to such expenses, employees enjoy 100% coverage of preventive care, including such procedures as an annual PAP smear and exam for cervical cancer screening, mammograms, PSA tests for prostate cancer screening, and even some immunizations. 

NAFC is not the exception. In fact, human resources consultant Watson Wyatt Worldwide is quoted in the WSJ article as stating 72% of large companies in 2009 are providing complete coverage of preventive care, up from 55% only a year earlier.
But the real problem is not miscoding.  What is subtly operative is how healthcare financing systems influence the behavior of physicians and their administrators.  Under traditional indemnity plans such as PPOs so widely prevalent in years past, doctors typically had to code procedures as purposely diagnostic in nature in order to get paid, as preventive services were not covered.  Medicare still functions this way.  So under that payment system, if a patient undergoing a routine mammogram were asymptomatic, the doctor would still code the procedure as anything other than “baseline,” or first, but instead as diagnostic.  However, under a high-deductible, preventive health plan, the insurer’s coding only equates “baseline” with “preventive” whether it is the first or the 20th mammogram.  The dilemma in this latter scenario for the doctor is that she must lie and term the latest mammogram “baseline” when it is it is actually going to be compared to an earlier mammogram, forcing her to use different medical jargon than she normally would.   At a minimum, she must think about the coding system in a different way than in the past and know whether her patient is in one plan or the other.  And unless the patient insured by a high deductible plan digs in and confronts the insurer with the trap that has been laid to avoid paying the doctor, the patient receives a bill for the “free” exam.  Should the patient refuse to pay, the medical practice will ding the patient’s credit rating.

We’ve got to stop the game playing by replacing the system being manipulated by insurers who are avoiding payment to providers for their services and by doctors seeking first and foremost ways to get paid.  Under either scenario, the patient loses.  It’s time to get serious about comprehensive health care.   Good healthcare must include preventive services, including nursing instruction on how to give breast self-examinations in combination with mammograms in the case of breast cancer screening.   Patient education must be valued alongside procedures. And we must not have a system that encourages gimmicks and games with coding.

Similarly, in the case of overactive bladder, the system should cover a nurse specialist’s or physical therapist’s instruction on bladder retraining and performing pelvic muscle exercises in combination with coverage of medications, nerve stimulation, and the option of a neuromodulation implant.   To know all of your options to which you deserve access in the case of OAB, visit http://www.nafc.org/bladder-bowel-health/types-of-incontinence/urge-incontinence/.

Until the healthcare financing system is overhauled, however, we all must remain alert to coding minefields and fight for our rights. 

Nancy Muller
Executive Director

1    “Why Patients May Be Billed For Free Exams,” The Wall Street Journal, May 21, 2009

Always on the lookout for advice to pass along, I recently came across a home safety “checklist” that I’d like to share from Pamalyn Kearney , a licensed occupational therapist (OT) and assistant professor and vice chair of the Department of Occupational Therapy at University of the Sciences in Philadelphia.  At NAFC, we are big promoters of the multidisciplinary role played by specially trained providers in continence care. This includes occupational therapists, professionals in a science-driven, evidence-based profession that enables people of all ages to live life to its fullest by helping them promote health and prevent – or live better with – illness, injury, or disability.  The OT, an advanced degree professional,  must complete masters of science or doctoral level of training in order to be certified in the field. Such graduate level training also requires clinical experience. The beauty of an OT is that his or her training bridges the study of physiology and anatomy with the practical realm of living and thus human quality of life, perhaps more so than any other discipline in healthcare.

Kearney’s recommendations for proven interventions that can reduce home falls and accidents by older adults are so helpful that I share them intact and thank her over the internet for this list:

•    Bathroom modifications:  Install grab bars, shower seats, hand-held showers, and raised toilet seats in the bathroom;
•    Stair rails:  Install railings on stairs, including basement stairs, and consider railings on both sides of the stairs;
•    Lighting:  Increase the wattage of light bulbs (sorry, planet earth), for ambient and task lighting, while being careful to not increase glare. Add nightlights in the hallway between the bedroom and bathroom, as it takes time for eyes to adjust from darkness to bright light especially in the middle of the night when getting up to use the toilet;
•    Reduce glare:  Add additional ambient light along the stairs;
•    Clear walkways: Remove things you can trip over, such as papers, books, clothes, and shoes, from stairs and places where you walk. Replace telephones with cordless sets to remove cords. Tack appliances cords along walls to remove them from walkways;
•    Increase contrast:  Avoid low contrasting items, such as a white bathtub surrounded by white tiled walls, as this can make it difficult for someone with low vision to find the toilet. Add contrast as simple as a blue tub mat in a white bathtub; and   
•    Heat safety: Check for air conditioners or fans, needed to help prevent heat stroke and dehydration in the elderly during the hot, summer season.

While there are preventable strategies to help make the home safer for toileting and ambulation, especially at night among older adults, it is essential that diagnosis and treatment of nocturnal frequency of urination are addressed. There are behavioral strategies that work and treatment options to evaluate in conjunction with each prescription drug.  Log onto to http://www.nafc.org/bladder-bowel-health/types-of-incontinence/urge-incontinence/#DietaryChanges in order to learn more about what is possible.  And contact us for help finding a qualified OT in your area at http://www.nafc.org/home/.

Bottom line:  Follow Pamalyn Kearney’s sage advice for her aging relatives:

•    Remove tripping hazards
•    Place frequently used items in easy reach
•    Evaluate lighting conditions and reduce glare
•    Install handrails and grab bars, but not just in the bathroom
•    Conduct a professional home evaluation to match your individual needs and habits.  Call an OT!

And I’ll add my sixth point:  Get your OAB diagnosed and stick to a combination therapy of behavioral strategies and medications and/or minimally invasive devices. If you’re a home caregiver, get your loved one plugged in. Above all, stay active, safely, as you age with the years not by the falls.

Nancy Muller
Executive Director

    * Residents of a nursing facility

    * Immunosuppressed patients, such as those with AIDS or on cancer chemotherapy

    * Patients with documented vesico-ureteral reflux

    * Pregnant, spinal cord injured patients

    * Patients with recurrent urinary tract infections

While self-catheterization with reuse of catheters over the course of a week’s period of time and following “clean technique” for cleansing and storing supplies has worked successfully for millions of people over the years, for others the practice has been untenable and downright unsafe because of the possible complications and risks associated with costly infection. From the outset, no catheter has been approved by the FDA for anything but single use in the U.S.  However, the economics faced by private citizens of their circumstances have forced reuse of the device.

For once, CMS has finally acknowledged that a “one size fits all” approach to coverage and reimbursement policy doesn’t belong in our healthcare system and certainly not for those with chronic illnesses and conditions such as multiple sclerosis, spinal cord injury, and spina bifida. We’ve simply got to do better than taking a pantyhose approach to healthcare for our nation. Thank you, CMS! And thank you, long time advocates who have fought to get CMS’ attention, with the help of Congress.

If you need more information because of a chronic, neurological disease or condition, visit here.

First, let’s review what is really happening anatomically. Pelvic organ prolapse is defined as the descent of the top of the vagina or cervix and may involve the collapse of the front or back walls of the vagina. When this support is compromised, compartmental structures, such as the bladder, uterus, or lower intestine, can move out of their proper position and even protrude from the body’s outlet. Hence, the term “fallen bladder.”

Because of the heavy association between vaginal delivery and the occurrence of prolapse, you might argue for C-sections for all women. However, the costs and risks of surgery and complications from C-sections are considered to outweigh the risk that 1 in 10 women delivering will experience moderate to severe prolapse. Universal C-sections are not the answer!

I like to think of our female pelvic organs as the solar system. Each organ has its place relative to the other organs and structures. Collagen and connective tissue help to keep them in orbit. If one planet were to suddenly disappear or shift its orbit, a corresponding shift in positions of the remaining planets would likely occur. So it is with organs of a woman’s pelvis.

Certain factors can throw those planets out of orbit. Although there’s much more for us to learn from future research, how can you best protect yourself against the risk of experiencing prolapse – or allowing mild prolapse to worsen - based on what we do know?

    * Follow a faithful, lifelong routine of doing pelvic floor muscle exercises, both short and long contractions, before, during, and after pregnancy.
    * If you’re carrying excess weight, lose it. If you’re at your ideal weight, maintain it.
    * Avoid heavy lifting.
    * Engage in regular exercise that minimizes the downward forces of gravity, e.g., swimming over gymnastics
    * If you have a chronic cough, seek treatment for it. If you smoke tobacco, stop.
    * Eat a high fiber, low fat diet and stay hydrated to avoid constipation.

To learn more, visit here.

At the beginning of a new year, one often resolves to tackle new goals or longstanding objectives that have received insufficient attention in past months or even years.  But how often do we think about the needs of others rather than our own selfish wish lists at this time of year?

The beginning of a new year marks an opportunity to help a family member or special friend to address a growing or persistent problem with bladder or even bowel control.  Especially if a relative is residing in assisted living or remotely, it’s easy to put those embarrassing family gatherings out of mind for another year and avoid the confrontation.  In 2010, consider doing the alternative.

The first step in working with older persons with incontinence is to understand how their thinking may influence their behavior. Many older people think that there are no treatment options and believe they "just have to live with it." In fact, research shows that one third of all adults believe that bladder control problems can compromise a person's ability to manage gas, the need to urinate frequently, or even cause diarrhea or constipation. If they are living in an assisted living community, they may avoid reporting such symptoms to the campus nurse or supervisor for fear it will affect how they are socially accepted.

Sometimes the facility may be part of the problem.  It may practice a “don’t ask – don’t tell” policy and leave the problem in the hands of the resident.  In some cases, supervisors never hear about the problem because the first line caregivers who assist with cleaning rooms or bathing and dressing residents are sworn to secrecy by the residents.

Getting the older person in these circumstances to acknowledge the problem is the first step but often the most difficult one for family members or friends who take the initiative to get involved.  This is true, particularly for people living in a continuing care retirement community, as residents may fear being transferred to another, more confining location on the campus or being charged more for monthly services.  Prospective residents of adult homes or assisted living facilities may have hidden the condition from family members and their own doctor because of embarrassment or fear they will be scolded or criticized.  Or they may fear they will be rejected from applying or forced directly into a nursing facility and lose all their independence and freedoms.

One on one discussions are the best way to open this dialogue, once a history of the problem has been established with repeated evidence of soiled clothing, isolation, excessive use of colognes or sprays to mask odors, and excessive linen and clothing changes.  Ask simple questions about their habits, such as whether difficulty is encountered making it to the bathroom “in time” or whether they frequency get up more than once a night to urinate. You might want to request a copy of NAFC’s Caregiver’s Desk Reference: A Comprehensive Guide to Quality Continence Care.

Once the dialogue is open, it’s much easier to reach agreement on getting help from a nurse practitioner or doctor especially knowledgeable about geriatric urinary and bowel health.  Make the appointment yourself.  Accompany them on the appointment.  Follow-up to help your older relative or friend adhere to the health provider’s advice and/or prescriptions.  Be part of the solution.  Be part of the care.  Make a difference in someone else’s life you care about and love.

Nancy Muller
Executive Director

Earlier in the year, a survey of 3,000 consumers conducted by Deloitte Center for Health Solutions for the Department of Health & Human Services (DHHS) was published online and revealed that consumers perceive significant quality differences among doctors, hospitals, and health plans.  Consumers see the greatest variation in quality among doctors.  Over half (57%) of respondents rated doctor variation at 80 on a scale of 1 – 100, with 100 representing “great differences in care.”  Comparable figures for hospitals and plans were 55% and 53%, respectively.  Barely one in ten (12%) believe quality among doctors does not vary.  Comparable figures for hospitals and plans were 10% and 9%, respectively.

Meanwhile, findings from a survey of 1,517 consumers by the Kaiser Family Foundation were released publicly in October 2008, reporting that only three in ten patients reported seeing quality information of any kind on health plans, hospitals, or physicians.  This is down 17% from 2006 and has dropped 23% since 1996 when Kaiser first surveyed consumers on the same subject.  The proportion of patients who used the quality reports to make decisions is even reportedly lower.

Still, in 2003 the RAND Journal of Economics published research examining the importance of quality differentiation in hospital care markets, in which quality and distance are important determinants of hospital choice.  The tradeoff between quality and distance, as well as the valuation of different aspects of quality, varies with patient characteristics.  Younger consumers, for example, view judgments about hospital distance differently than older consumers.

What are we to make of these confusing and even somewhat contradictory studies?

My take is that a consumer needs input from multiple sources in order to make smart choices and needs to understand the basis for a performance rating from any source.  Different organizations will be rated differently by different services.  In addition, different people have different preferences.  And different diagnoses and circumstances may dictate different decisions.  One size does not fit all.   Nor should we even aspire to a single overall quality rating for a hospital offering 30 or more diverse clinical services.  It wouldn’t be terribly meaningful even if we had one, homogenized number to rely upon.  Most importantly, we should never underestimate the ability of an educated, informed consumer to make the best choices in healthcare to meet his needs.

For this reason, NAFC holds steadfast in our commitment to help provide public health education and  factual information to help guide the consumer’s decision-making process as it pertains to continence care.

Need to find an expert?  Log onto the homepage of www.nafc.org and enter your zipcode to obtain a listing in a 50-mile radius or less of your home. Or we can be called at 1.800.BLADDER for help in finding someone.

Survey data reveals the fact that bladder and bowel control problems restrict people from social engagement and physical activities.  This makes it more difficult to shop and run errands.  Living in a village under any one of these models can remove embarrassing obstacles.

But what is done when incontinence overwhelms the family caregiver?  This happens across our nation in instances of the elderly, particularly in instances where one spouse has advanced dementia or Alzheimer's disease. An impaired spouse can’t be left alone while the well spouse is shopping for incontinent supplies and other necessities.  Studies have demonstrated a direct connection between incontinence and falls and fractures in the elderly, just one problem to worry about with self-toileting. Consequently research documents that incontinence is among the top three reasons that a loved one is placed in a residential nursing facility.  And placement itself can lead to an even higher incidence of incontinence following admission.  To learn more about incontinence and the impact of the aging process as a risk factor, NAFC can help you.

Although the average, annual cost of nursing home care is more than $50,000 a year and climbing, the AARP reports it can vary widely depending on where you live.  Employee health insurance does not pay for nursing home care. About a third of nursing home residents pay all of their nursing home costs from their own savings, and many people exhaust their finances after just six months.  Only a small fraction of the population—about 5 percent—holds long-term care insurance, which covers the cost of a nursing home or other extended care.  Medicare, the federal health insurance program for older persons and some younger ones with disabilities, pays only for short-term nursing home stays immediately after hospitalization.  Clearly, more alternatives are needed to a residential nursing facility.  Aging-in-place communities could be a real answer and certainly help to postpone at least the need to leave one’s private home.

Be a leader in your community.  Research what models may already exist elsewhere that might fit your neighborhood.  Call a neighborhood meeting.  Survey the interest in such a concept, the skill sets for bartering, and the unmet needs for services among neighbors.  Find out what services are already available through the local government and not for profit organizations…..and those that are threatened without more public-private partnerships.  Look after your village to promote safe and loving aging-in-place.

Nancy Muller
Executive Director

All female survey respondents complained of troublesome, lower urinary tract symptoms and had been referred for further investigation by their doctors.  Their mean age was 48 years, ranging from 20 – 73.  The mean duration of symptoms was six years, ranging from six months to 40 years.  Among the respondents were those with various diagnostic categories, including stress urinary incontinence (leakage upon the pressure of coughing, sneezing, or laughter), overactive bladder, or OAB (urgency and incontinence and urge incontinence from OAB), and other voiding difficulties and sensory urgency.  The research was conducted at Kings College Hospital in London.

What was found should be noted by all of us Americans for reflection:  The majority of women possess realistic expectations regarding outcomes and are able to tolerate the inconvenience of minor lower urinary tract symptoms.  While most (60%) women are willing to consider a course (6 months) of pelvic floor exercises, most (69%) are not willing to take drugs for life for a bladder control condition such as OAB, nor willing (57%) to undergo a major operation (such as for stress urinary incontinence) with only an 85% likelihood of cure.  As for urinary retention and incomplete emptying of the bladder, four out of five (79%) are not willing to undertake long term catheterization as their only outcome.  What is perhaps most interesting is the fact that the concept of cure was not influenced by symptom severity.

All of this speaks to the importance of patients speaking up when in dialogue with their doctors and nurses………..and, more importantly, of patients being fully informed, in understandable language, before consenting to any procedure, an operation, or even a medication.  Our expectations are an integral part of what outcomes represent as well as how they are valued.

Nancy Muller
Executive Director

While longevity has been extended by improved nutrition over the decades, advancements in technology, and victory in the battle against infectious illnesses, it is accompanied by an ever graying population living with multiple chronic illnesses and conditions.  Half of all Americans today have one or more chronic conditions (Foundation for Accountability, 2001). The Robert Woods Johnson Foundation (1996) reports chronic conditions and illnesses are believed to account for three out of every four deaths in this country….and reportedly an equivalent share of healthcare spending. Yet the U.S. healthcare system is criticized for being still largely designed to respond to acute illnesses, failing to meet the full needs of people in such situations (Hoffman et al., 1996). Moreover, the role of the community hospital has yet to be defined in this context nor put into gear strategically for its future calling. Other sectors fall woefully short, including the public health education system as a resource to patients and caregivers.

The second trend of unbridled spending – today at $2 trillion and nearly 20% of the nation’s GNP – still leaves millions uninsured and countless others disenfranchised. Our embarrassingly low health literacy rate – one fifth of the populace – prevents individuals from being equipped to manage self-care decisions and strips them of quality of life choices. Despite our spending, the U.S. fails to rank among the top ten nations worldwide in terms of quality of care, even by the most generous of yardsticks.   We have no guiding policy to direct the management of two significant contributors to the tab: an aging population and one that is increasingly obese and unfit. Link here to learn how obesity is linked to problems with bladder control: http://www.nafc.org/stress-incontinence/#Causes

It has been statistically demonstrated in other developed countries that higher levels of primary care professionals are associated with lower overall mortality and lower death rates due to diseases of the heart and cancer (Shi 1992). Yet we continue to allow incentives that push doctors in the specialties and sub-specialties, encouraging maldistribution of all practitioners geographically. Instead we gaze at other countries whose health systems are more oriented to primary care achieve higher health status among their populaces, higher consumer satisfaction with health services, lower expenditures in the delivery of care, and earlier intervention in preventable illnesses and conditions.

When you vote in November, think about the candidates who will help get this nation on a prudent and strategic course that eliminates barriers to access, rewards rather than penalizes longevity, wisely contains spending by investing in technology that delivers improved efficiency and safety where it counts most, and boosting primary care coverage of all Americans.

Much has been published in the literature in the past decade about people living with overactive bladder (OAB).  Prior to the 21st century, the term did not even exist.  As a diagnosis category, it was coined by pharmaceutical marketers trying to mainstream their language to help ordinary citizens connect the dots between daily symptoms of rushing to the toilet and solutions to mitigate the urgency and frequency of urination.   An awkward term like “urge incontinence” was too unfamiliar and certainly not descriptive enough. Marketing gave birth to “overactive bladder.”

As the pharmaceutical industry has increasingly sought to capitalize on the trend of people living longer with chronic diseases and conditions rather than life-threatening illnesses or traumas, it has realized the demand for quality of life standards by aging baby boomers actually fuels its ambitions and opportunities. Nevertheless, throughout the numerous studies quantifying how quality of life is impacted by symptoms of OAB, few have focused on quality of sleep as a critically important activity that is affected.

Nocturia is described by the International Continence Society as “sleep-disturbing voiding” and defined specifically as “the complaint that the individual has to wake at night one or more times to void.” 1 The American Urological Association (AUA) states that nocturia is “considered a clinical problem if frequency is greater than twice a night.”2

Nearly nine years ago, in the first quarter of 2001, NAFC completed its first nationwide survey of 1,001 men and women ages 30 to 70, conducted by Yankelovich Partners and funded by Pharmacia Corporation (now owned by Pfizer).  The study was one of the first that attempted to quantify the prevalence of nocturia, or frequent awakenings to use the toilet.   Among those respondents who revealing  they are aroused from sleep during the night to go to the bathroom, almost two in five (38%) have to get up twice or more often.  One in eight (13%) of these individuals say they sometimes do not make it to the toilet before accidentally losing urine .3

Less than two years later, NAFC contracted Harris Interactive to interview online 1,228 women age 40-65 with a household income of $35,000 or more.  Conducting the survey in December 2002, the research found OAB sufferers live in poorer health than those free of OAB symptoms.  In addition to living with multiple medical diseases such as gastrointestinal disorders (32.2% vs. 13.9%), hypertension (35.1% vs. 15.2%), obesity (39.1% vs. 17.1%), and arthritis (42.5% vs. 19.9%), OAB sufferers are two to three times more likely than non-sufferers to experience disturbed sleep, difficulties concentrating, tiredness, overeating, and lack of self-esteem, according to survey responses. 4

It’s time for nocturia to be tackled, better understood, and treated by practitioners for what it is.  Consumer research completed this year by NAFC and in publication is shining a new spotlight on the subject.  We now have data on how nocturia specifically affects socialization, physical intimacy, and relationships with others.  According to the National Center for Sleep Disorders Research at the National Institutes of Health, about 30 to 40 percent of adults have some sort of chronic and persistent sleep disorder resulting in chronic sleep deprivation.5 How much of the problem is connected to OAB?  We really do not know the precise answer to this.

How do you clinicians question patients about their symptoms, what intervening steps do you  recommend to mitigate symptoms, what behavioral strategies do you employ, and what do you not know about addressing nocturia?  We could all do a better job of giving nocturia the attention it deserves. Otherwise, chamber pots should be brought back in fashion, with love for every baby boomer and beyond!

Nancy Muller
Executive Director

(1) ICS Factsheet 2: Overactive Bladder, July 2005, available online and accessed October 14, 2009, from http://www.icsoffice.net

(2) 2007 American Urological Association Annual Meeting Highlights- OAB: http://www.auanet.org/content/education-and-meetings/on-line-education/amhighlights/oab1007.pdf

(3)  Muller N.  What Americans understand and how they are affected by bladder control problems:  Highlights of recent nationwide consumer research.  Urologic Nursing; 2005: 25, 109 – 115.

(4) Ibid.

(5) Hossain JL, Shapiro CM.  The prevalence, cost implications, and management of sleep disorders: an overview.  Sleep Breath; 2002: 6, 85-102.

I write in connection to the September 24, 2009 announcement by the Food and Drug Administration (FDA)  that the agency is considering reversing clearance granted of a knee-surgery device, after finding evidence that the agency under then-Commission Eric von Eschenbach may have been swayed by political pressure to clear a product for marketing.  It had previously been rejected repeatedly by FDA staff scientists for safety concerns.  The story was reported in The Washington Post September 25th.

Until more teeth can be put into the process of approval by the FDA to fully vet devices that are implanted in the body so that more safety data is required before clearance for marketing is granted by the Government, patients need to undergo a more rigorous informed consent experience.  There must be more extensive public education of patients prior to such surgery so they fully understand their alternatives and the risks and potential benefits associated with each.  An example is the unbranded coverage of implants for both SUI and prolapse in women and SUI in men, found at www.nafc.org Discussions prior to surgery should take place with their surgeon, not an administrator or staff nurse who reads aloud a text dense document in rapid fire fashion.  No patient should be taken into the OR without a separate surgical consult.  Individuals also need to be informed about economic considerations, regardless of whether the procedure is fully insured through private or public payment mechanisms.  Patients need to be informed of any and all financial incentives their doctors and surgery centers may have for performing some procedures over others.  Full disclosure is a must.

Patients should be given adequate time to reflect on all of these considerations, with several days rather than a few hours or less for reflection, additional questions to be answered, and even dialogue with others.  Informed consent involving the implantation of a new device with limited data should include an objective witness, verifying such guidelines have been duly followed and certifying that the patient is capable of digesting all that has been revealed for decision-making.

Just as we’ve seen in recent cases settled in court involving patient deaths related to undisclosed information by pharmaceutical companies about risks of drug usage, post-market surveillance by the FDA of all drugs and devices is growing in importance.  Voluntary online postings by doctors in the MAUDE database reporting adverse events involving 510K devices are insufficient.  There should be random audits of company and surgery center OR and outcomes data.  Consumers should have ease of access to this information as well, without having to file a request through costly attorneys under the Freedom of Information Act.  Lastly, all implanted devices should be barcoded and tracked by the facility where they were implanted so we have a prayer of readily finding patients should recall be needed by responsible manufacturers.

Why can’t we begin working as an integrated team in the healthcare delivery system here in the U.S.? Why do companies and agency administrators ever have a chance to outsmart the system?  Why do dishonesty, corruption, and laziness prevail when patient lives are at stake?

Nancy Muller
Executive Director

Labor may last for five days or even longer.  In most cases, the fetus dies from asphyxiation for lack of oxygen.  If the mother survives the hemorrhaging or infection, she is destined to living life with a fistula resulting from the tissue damage.  It is not unlike a pressure ulcer of internal organs. With continuous leakage of urine through the hole created in the bladder wall, the victim finds herself abandoned by her husband, family, tribe, and society in general.   She is shunned and turned out, rejected and discarded.  Suffering from utter loss of self-esteem and a means of livelihood, these societal castaways can and do become suicidal.

Obstetrical fistulas are curable in the large majority of cases through low-technology surgical repair, but facilities at which this surgery can be accessed are rare in those countries where the incidences are highest and unbridled.  Throughout Africa and South Asia, experts estimate that as many as 3.5 million women suffer from this disastrous complication of childbirth.

As we reflect upon the passage of October – and Breast Cancer Awareness campaigns and in which many of us participated – let us not ignore the plight of women who lack access to the obstetrical care in childbirth that they deserve.  Instead, let us help bring hope and, more importantly, the means of fistula repair.  Above all, let us strive long term to bring advanced obstetrical care to women everywhere so that fistulas become something of the past.

The World Federation of Incontinent Patients, or WFIP, has selected heightened awareness of the problem and prevalence of obstetrical fistulas as one of its primary objectives on behalf of the millions of women impacted, in the hopes that both the incidence and prevalence can be dramatically reduced.  There are numerous, reputable funds through which you can contribute, here in the U.S. and abroad.  One of the oldest and best established is the World Fistula Fund, founded by Lewis Wall, MD, DPhil and Steven Arrowsmith, MD. 

To learn more and find out how you can help build its new hospital for fistula repair in Niger and elsewhere, visit here. 

If you wish to bring help and hope right here in America to those who face problems with bladder and bowel control but don’t know how to access answers,  call 1.800.252.3337 or write memberservices@nafc.org.