When the Allergy and Asthma Network Mothers of Asthmatics recently conducted an online survey on the impact of asthma, the results were more than a little eye-opening. Half of the respondents reported two or more unscheduled doctor visits during the preceding year, and 43 percent reported one or more trips to the emergency room. Nearly 20 percent also were hospitalized due to asthma at least once in the preceding year. Alarmingly, 15 percent of the survey participants had at least one asthma episode that was nearly fatal.
The report appears in the latest edition of Allergy and Asthma Today. The survey involved 409 individuals and was only available online, which may have skewed the results compared to the overall population. Nevertheless, it portrays the often difficult reality of living with and trying to manage a chronic disease.
Among some of the findings:
– Challenges are often multiple and differ from one person to the next. Some had trouble paying for their medications or getting their prescription filled with the medication prescribed by the doctor. Others reported missing many days of school or work because of asthma.
– Obtaining medication was an issue for many. Among the most common barriers: being unable to get a prescription filled or refilled, needing authorization from an insurance provider, and having to accept a substitute because the medication isn’t on the formulary. In some cases, the pharmacy no longer stocked certain brands.
– Although most of the survey participants had health insurance, they also incurred frequent out-of-pocket expenses associated with managing their asthma. Nearly one-third said they spent more than $1,000 a year on medications, devices and tests, along with co-pays and deductibles.
One of the findings that really stood out was the number of survey respondents who didn’t have an asthma action plan, a written and individualized plan to help them manage their asthma and prevent future episodes. Of those who reported a visit to the ER or a hospitalization within the previous year, 25 percent didn’t have an asthma action plan. Survey participants on Medicaid or Medicare were the least likely to have a written asthma plan. Specialty care didn’t seem to improve these statistics; among those who had seen a pulmonologist or allergist within the previous year, 27 percent had no asthma action plan.
The majority of the survey participants did have a plan, the magazine article points out. But it notes that even with an asthma action plan, many people still struggle with day-to-day life with asthma:
Some of it’s just the nature of asthma. You don’t go from having outrageous symptoms to no symptoms overnight. Many of these families are in the learning curve – the worst is behind them, but there’s still a ways to go. Others, well, they’re stuck. Stuck in access-to-care issues; stuck with missed work or school days; stuck with ever-changing healthcare rulesÂ made by people who don’t treat asthma patients every single day. Stuck going to appointments with doctors only to have someone else change the prescriptions they just learned how to use.
In an accompanying news release, Nancy Sander, president and founder of Asthma and Allergy Network Mothers of Asthmatics, says there’s still “a long way to go” to improve care for asthma. “Proven best practices such as completion of a proactive asthma action plan are still not widely adopted, and uncertainty is a major force in the lives of patients and their families,” she said.
I’m guessing a survey of people with diabetes, chronic obstructive pulmonary disease or any other chronic condition would reveal similar struggles. It’s not easy living with something chronic, especially when people don’t feel they have enough tools or information to help them.
I suspect it isn’t an accident that a new and completely unrelated study, this one of women who had undergone treatment for early-stage breast cancer, found that inadequate information often is associated with excessive worry about cancer recurrence. This particular study, which involved 1,837 women and was conducted by the University of Michigan Comprehensive Cancer Center, found women were less likely to worry if they understood the clinical information, received help with their symptoms and had a coordinated plan of care.
When clinicians focus on the problem at hand, it can be at the expense of the bigger picture. There’s probably no way to remove the anxiety or daily hassles of chronic disease, but wouldn’t patients be better off if they had the tools to help them feel more prepared?
Photo: Wikimedia Commons