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NEWS FROM THE AAN ANNUAL MEETING: New Study Asks What Is the Cost of Multidisciplinary ALS Care?

Rukovets, Olga

doi: 10.1097/01.NT.0000451839.88464.41
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In the first US study to calculate the financial burden of providing multidisciplinary care to ALS patients, experts found that it costs nearly $262,000 a year to run each multispecialty clinic.

PHILADELPHIA—Several studies have now shown that multidisciplinary care for amyotrophic lateral sclerosis (ALS) can improve survival, reduce hospital admissions, and lead to better quality of life for both patients and caregivers. But what does it cost?

Nearly $262,000 a year per clinic, according to new data presented at the 2014 AAN Annual Meeting here in Philadelphia from the first US study to calculate the financial burden of providing multidisciplinary care to ALS patients.

Lead study author Rup Tandan, MD, FAAN, professor in the department of neurological sciences at the University of Vermont College of Medicine, and colleagues examined the institutional costs, adherence to AAN Practice Parameters, and patient satisfaction associated with multidisciplinary care at 18 multidisciplinary ALS centers. The centers represented a range of settings — rural, urban, suburban — demographics, and socioeconomic profiles.

“The idea was that these data would help us continue to provide this [multispecialty] care to patients, and also to justify the care not only to patients and their caregivers/support persons, but also to donors, hospital administrators, health care policymakers, and insurance companies because this data would be very useful to all stakeholders in the ALS community. Further, this data may provide a reference for efforts to improve efficiency of care while maintaining the quality of service,” said Dr. Tandan. Additionally, these findings could then be extrapolated to other conditions that could benefit from multispecialty care, he said.

One ALS expert, however, was concerned that putting these numbers to paper might have the opposite effect — once policy makers become aware of how high the costs are for keeping these centers open, they could opt to eliminate the centers altogether.

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In this prospective study, Dr. Tandan and colleagues reviewed the data reported by the 18 US centers regarding patient volumes; direct costs for staff, salary/benefits, supplies, and equipment; and institutional indirect costs prospectively over a 3-month period. All of the times and costs were then annualized.

A total of 1,117 patients were included in the analysis (from 24 to 151 patients per individual center). The mean age of patients was 61.5 years and the mean patient score on the ALSFRS-R (ALS Functional Rating Scale – Revised) was 29 (48 is normal and 0 is the highest level of disability).

Amongst the 18 sites, the average annual cost of salary and benefit based upon time spent with patients in the clinic was about $121,000, or about $2.2 million for the 18 sites combined. The average outside of clinic costs associated with caring for these same patients was $141,000 per site, or $2.5 million in total.

Dr. Tandan told Neurology Today that they were surprised to find that about the same amount of time and money were spent on patient care outside of the clinic. “So, it drove the home the point that not only is there a cost associated with care in the clinic, but there is also significant cost beyond the clinic.” Most of the outside-of-clinic time was spent on phone calls and e-mails related to patients' care. These outside-of-clinic costs were based on salary and benefits for staff time related to these and other activities, whether or not they were reimbursed.

The other unexpected finding, said Dr. Tandan, was that severity of disease did not appear to have a significant impact on cost. “We had envisioned that patients with more severe disease would require more time in the clinic, or that there would be more cost associated with care in advanced patients with the disease. This did not turn out to be the case, suggesting to us that there is a basic cost of running a clinic providing multidisciplinary care — irrespective of the severity of disease.”

When they examined the adherence to AAN Practice Parameters, the investigators found it was above 90 percent for nearly all measures, which is consistent with previous research from the ALS CARE database ( “We found that just over one-third of our patients were using assisted breathing machines, typically through non-invasive ventilation, and about 21 percent had gastrostomies. About 53 percent were using riluzole as disease-modifying therapy, which is better than the national average,” said Dr. Tandan.

Patient satisfaction, which was based on a 27-item scale, with each question rated from 1 (poor) to 5 (great) was between 4 and 5 for all items. The highest scores for patient satisfaction were for questions related to patient-provider interactions, and the lowest scores were linked with location of the ALS center and other external factors.

In all, said Dr. Tandan, studies from different parts of the world have now shown that this type of multidisciplinary care is effective, prolongs life, and satisfies patients and caregivers. The question is: how do we continue to provide support and resources for multidisciplinary care in these individuals? He suggested that one potential route would be to lobby for multidisciplinary care centers to be designated by the Centers for Medicare and Medicaid (CMS) as Centers of Excellence, “thus permitting the employment of specific bundled billing codes for ALS multispecialty care,” he explained.

Since this was a three-month study, said Dr. Tandan, they were not able to look at survival outcomes. “We also didn't look at indirect costs to patients and caregivers — for example, costs of time lost from work due to early retirement for patients, and cost of time lost from work, travel, etc. for spouses and caregivers, which need to be explored in the future,” he said.

This study was funded by the ALS Association.

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ALS experts told Neurology Today that although this study had some interesting findings regarding patient satisfaction and guideline adherence, they were most interested in the cost data. There have been few previous studies examining the costs involved with providing multidisciplinary care, said Robert G. Miller, MD, the Forbes Norris ALS/MDA Research Center Program Director at California Pacific Medical Center, so this type of research is vital.

“We've known that this care costs a lot and that insurance doesn't pay very much for it, and many of our patients are either on Medicare, MediCAL, or uninsured. The reimbursement provided by these federally funded programs for the care of an ALS patient covers about 10 percent of the cost,” he said, and the rate is not much higher for patients with “very good insurance.”

It's important for policymakers to understand that going to these clinics has an evidence-based background, said Dr. Miller, who co-led the Quality Standards Subcommittee which published AAN quality measures for patient care in ALS last December. “The number one quality measure is attending a clinic that is multidisciplinary and having a care plan,” he said.

James A. Russell, DO, FAAN, vice chairman of neurology and director of the ALS Clinic at Lahey Hospital and Medical Center in Burlington, MA, which contributed data to the current study, said that these data could potentially be used to benefit or detract from the care available to ALS patients.

“Many institutions are struggling to keep our heads above water economically and I don't know that anybody is completely invulnerable to the red pen, so part of me fears for the future of my ALS multidisciplinary clinic because of data like this. In a certain way, out of sight out of mind was a safer alternative for me,” he said.

The goal of the ALS Association in gathering these numbers was likely to demonstrate the large amount of care that is being provided to these patients, for a cost that's largely not reimbursed, noted Dr. Russell.

“They're hoping to use that data to lobby with CMS for further economic support, so that's the potential greater good.” However, the potential harm, he continued, “is that the institutions and hospitals will look at this and see how much of a money-loser this is, and disband the clinic because it's not a good economic model for them.”

But Dr. Miller is optimistic. “I'm hoping that now, as we begin to show the data and demonstrate what the need is more clearly, we can begin to advocate in all of these arenas for better coverage of the cost of care and the quality of care,” he said.

There were several cost areas that were not examined in this study, including reimbursement, direct medical cost, and indirect cost to both patients and caregivers, the commentators pointed out.

“Many people who work in the clinic are not fully reimbursed because insurance companies don't like to pay multiple health care providers to take care of the same patient in the same day for the same problem. A lot of what goes on even in the clinic is pro bono, so the important part of this research that's missing is what the reimbursements are,” said Dr. Russell.

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•. AAN Annual Meeting Abstract: Prospective study of cost of care at multidisciplinary centers adhering to AAN amyotrophic lateral sclerosis (ALS) practice parameters:
    •. Miller RG, Brooks BR, Swain-Eng RJ, et al.. Quality improvement in neurology: amyotrophic lateral sclerosis quality measures: Report of the quality measurement and reporting subcommittee of the American Academy of Neurology. Neurology 2013; 81(24):2136–40. Epub 2013 Nov 22.
      •. Additional research on multidisciplinary care for neurologic conditions in Neurology Today:
        •. More research from Neurology on the cost-effectiveness of multidisciplinary care:
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