How practices can make room for mobility
■ More than 40 million Americans have a disability, and about 24% of them use mobility aids. Experts offer tips to improve care for these patients.
Lisa I. Iezzoni, MD, MSc, has not been weighed in nearly two decades. The last measurement was taken when she still could stand -- before multiple sclerosis made her rely on a wheelchair.
Similar to those in many doctor's offices, the scale where Dr. Iezzoni sees her primary care physician is not wheelchair-accessible.
As a patient and an expert on disabilities, she understands the challenges that people with mobility impairments face when trying to access medical care. She said each obstacle, no matter how small, can send patients with mobility limitations a hurtful message. "It tells people with disabilities, 'You are not welcome here. I do not give the same quality of care to people with disabilities,' " said Dr. Iezzoni, a professor of medicine at Harvard Medical School.
More than 40 million Americans are living with a disability, according to an Institute of Medicine report on disability in the U.S., published in 2007. Other agencies, such as the U.S. Census Bureau, estimate the figure to be as high as 54 million. The disparity is due, in part, to varying definitions of disability and limited research on this population, experts say.
Among those with an impairment, about 13 million people 15 and older have a mobility limitation that necessitates the use of adaptive equipment such as crutches, a walker or wheelchair, according to Census Bureau data.
The prevalence of all disabilities is expected to grow substantially in the next 30 years, as baby boomers age and people continue to live longer, the IOM said. Also expected to contribute to the uptick are increases in childhood health conditions such as asthma and obesity, which can cause complications later in life.
As the number of patients with impairments grows, so, too, will primary care physicians' role in treating these patients, largely because preventive health care is critical for this population, disability specialists say.
People with an impairment are more likely than others to report being in poor health, to be overweight or obese, to have chronic conditions and to participate in high-risk behaviors, such as smoking, according to the Centers for Disease Control and Prevention. Their sedentary lifestyle also increases the risk of developing chronic ailments, particularly in patients with mobility limitations.
Yet data show that people with a disability are less likely to get the preventive care they need -- such as information about smoking cessation and safe sex -- than other patients.
Women with movement difficulty have lower rates of mammography and Pap smears compared with other females, said a report written by Dr. Iezzoni in the October Health Affairs.
"Clinically, it doesn't make sense. These patients have so many risk factors" for health conditions, said Dr. Iezzoni, director of the Mongan Institute for Health Policy at Massachusetts General Hospital in Boston.
There is a lack of training for primary care physicians in how to care for patients with mobility disabilities and insufficient time to manage their health issues properly, said Lex Frieden, a professor of health informatics and physical medicine and rehabilitation at the University of Texas Health Science Center. Frieden, who uses a wheelchair because of a spinal cord injury, helped write the Americans with Disabilities Act, which was signed into law in 1990 and protects people with physical or mental disabilities from discrimination.
Contributing to the health care disparity of patients with mobility limitations is the high cost of equipment needed to accommodate them, doctors' concern about insufficient payment for time spent treating these patients and, in some instances, physician bias, Frieden said.
He said most doctors apply the same standard of care to patients who are disabled. But, he added, "I've heard of cases where people with disabilities are not offered preventive treatment simply because of the doctor's assumption that they're already disabled, and being more disabled is likely to occur through nature and aging.
"I hate to believe that it happens very often, but these are the kinds of things we're concerned about."
Unmet health needs
Though patients with disabilities largely are satisfied with their medical care, they report higher levels of unmet health needs than people without an impairment, according to a study of 5,183 U.S. adults published in Disability and Health Journal in 2008. The adults participated in the Joint Canada/United States Survey of Health between November 2002 and June 2003.
Thirty percent of insured participants with a severe disability reported having unmet health care needs, compared with 8% of people without an impairment, the study showed. Severe disability was defined as having one or more functional limitations and restrictions in daily activities or being unable to work.
Discontent was higher for individuals without health insurance, according to the study. Among uninsured patients with a severe disability, nearly three in four had unmet health care needs. But only one in four uninsured patients with no disabilities reported unmet health needs.
Many people with a disability have public health insurance, such as Medicaid, or no coverage at all, because they tend to have a lower income than other individuals, said Lisa Thornton, MD, a pediatric rehabilitation specialist in Chicago.
The 2010 U.S. Census shows that more than one in four people with a severe disability fell below the poverty rate, compared with 9% of those without impairment. That factor adds to the challenges primary care physicians face in caring for this population, Dr. Thornton said.
When doctors search for a nearby specialist to help manage a patient's care, they often can't find one who will accept people with public insurance or no coverage, she said. Many times, patients either travel several hours to see a specialist who will accept them, or the primary care physician takes on the full responsibility of treatment.
"The risks are that patients are not getting optimal health care," said Dr. Thornton, medical director of pediatric and adolescent rehabilitation at LaRabida Children's Hospital in Chicago.
The consequences of that for children can be permanent deformities, said Ruby Roy, MD, a chronic disease pediatrician at LaRabida. She also co-directs the hospital's Cerebral Palsy Medical Home Pilot Project with Dr. Thornton.
She said there often is an opportunity for children with mobility impairment to improve if physicians and disability specialists address their medical conditions properly. For children with cerebral palsy, regular therapy and primary care can help prevent complications such as chronic pain, contractures and dislocations.
"But if doctors treat them as if they're immobile, they will become an immobile adult," Dr. Roy said.
To help primary care physicians better care for patients with impairment, Dr. Thornton recommends that they learn about the disabilities they see in their practices. She also recommends that doctors reserve two time slots for office visits involving a patient with disability so they have sufficient time to address the individual's health issues.
Physicians should talk to patients who have mobility impairment about alcohol and tobacco use and the importance of safe sexual practices and cancer screening, said Charles Drum, PhD, director of the Institute on Disability at the University of New Hampshire. The fact that some doctors do not "talk about preventive services [with these patients] is a significant concern," he said.
Doctors can make small physical modifications to their offices to help patients with mobility limitations, said Dr. Iezzoni, of Harvard. She suggested starting in the waiting room, where physicians should make sure there is space for wheelchairs and a place at the registration counter for patients who are unable to stand.
Accessing a bathroom in practices that are in older buildings is a common challenge for people with mobility issues, said Frieden of the University of Texas. In fact, he cannot use the restroom in his doctor's office, because the stall doors are not wide enough for his wheelchair.
To resolve the issue, he recommends that physicians post signs in waiting rooms to direct patients to the nearest bathroom on that floor that can accommodate them. He also encourages doctors to use the practice's largest exam room for people with mobility limitations so they can move comfortably.
"Physicians need to understand that the Americans with Disabilities Act includes a provision of reasonable accommodation. An old clinical building with small spaces does not need to be remodeled, but there should be available a space large enough" to comfortably fit a patient who uses mobility aids, Frieden said.
Dr. Iezzoni recommends that all practices have at least one power exam table that can be lowered so that patients with mobility limitations can ease themselves onto the table rather than having to be lifted by medical staff or examined in their wheelchair.
She said such tables are expensive (some cost more than $9,000), but tax credits and deductions are available to offset expenses incurred when complying with the Americans with Disabilities Act. If physicians choose not to purchase the equipment, Dr. Thornton suggests that they teach staff members the proper way to lift a person with a mobility impairment onto an exam table.
Wheelchair accessible scales also are available. In offices that don't have one, physicians can refer patients to a nearby disability specialist to be weighed.
"The medical needs of people with a disability are complex," Dr. Thornton said, "and for primary care physicians, a failure to be able to meet all those needs is not something they should feel inadequate about."
But doctors should give the same level of care to all patients, she added. Even if that takes a little more time.