Prospective study of cost of care at multidisciplinary ALS centers adhering to American Academy of Neurology (AAN) ALS practice parameters

Abstract

Multidisciplinary care in ALS is associated with longer survival, improved quality of life, and reduced hospital admissions, but there are no published data on institutional costs associated with multidisciplinary ALS care at U.S. centers. We prospectively examined institutional costs, adherence to AAN Practice Parameters and patient satisfaction in multidisciplinary ALS clinics at 18 U.S. ALS centers. Centers reported patient volumes; direct costs for staff salary/benefits, supplies and equipment; and institutional non-salary and overhead costs over a three-month period. In 1117 patients seen during this period, mean age was 61.5 years (range 25–91 years), 56% were male, and mean ALSFRS-R score was 29. Mean total salary/benefit cost per clinic day for all providers was $2964 (range $1692–$5236 across centers). Mean salary/benefit cost per patient per clinic was $507 (range $258–$806 across centers). Differences among centers in reporting non-salary costs prevented meaningful analysis. Practice parameter adherence and patient satisfaction were high. This prospective collaborative study demonstrates the direct financial burden of evidence-based multidisciplinary ALS care in the U.S.; more refined non-salary and overhead cost data are needed to evaluate the full cost impact of care. These data may be useful in supporting evidence-based models of patient centered care for ALS.

Key words::

• Amyotrophic lateral sclerosis
• multidisciplinary care
• health care economics

Acknowledgements

The authors recognize and thank The ALS Association for identifying the need for this study and for the Association’s personnel and financial support throughout the project. We recognize the following Chapters of The ALS Association for their close collaboration with the sites and participation in this study: Golden West, CA; Florida, FL; Mid-America, KS; Kentucky, KY; Massachusetts, MA; MN/ND/SD, MN; St. Louis Regional, MO; Northern New England, NH; Upstate New York, NY; Greater New York, NY; Jim ‘Catfish’ Hunter, NC; Northern Ohio, OH; Oregon and SW Washington, OR; Greater Philadelphia, PA; Texas, TX; Evergreen, WA; Wisconsin, WI. We thank the patients, caregivers, and staff at all sites for participating in this study. We also thank Alex Sherman and his team from the NEALS Consortium Project Management site at the Massachusetts General Hospital, Boston, MA for helping devise study instruments and facilitating data management. We acknowledge the contributions from Jamie Aranda, Miriam Brodkin and Amber Walters at The ALS Association national office for their help with data entry and verification. We thank Michael DeSarno, University of Vermont, for his assistance with data analysis. The authors acknowledge the ALS C.A.R.E. Program and the Health Resources and Services Administration; Primary Care: The Health Center Program for Patient Satisfaction Survey model for use of their instruments in the development of this study’s data collection tools.

ACCESS Consortium Site Investigators

Ezgi Tiryaki, MD, Gordian Yap, RN, R.NCS.T, CNCT, Cindy Rohde, RN, The ALS Center of Excellence at Hennepin County Medical Center, Minneapolis, MN; Catherine Lomen-Hoerth, MD, PhD, The ALS Research and Treatment Center at UCSF, San Francisco, CA; Erik P. Pioro, MD, PhD, FRCPC, Rebecca M Kuenzler, MD, Julia Anisimova, MSN, FNP-BC, Cleveland Clinic, Cleveland, OH; James A. Russell, DO, FAAN, Janet Zani RN, MSN, FNP-BC, CNRN, Lahey Hospital and Medical Center, Burlington, MA; Jonathan Katz, MD, Dallas A Forshew, RN, BSN, Giovanna Kushner, The Forbes Norris ALS Research and Treatment Center at California Pacific Medical Center, San Francisco, CA; Paul E. Barkhaus, MD, Jigar Mankad, MD; Medical College of Wisconsin, Milwaukee, WI; Kevin B. Boylan, MD, Kathleen Hebenstreit, RN, BSN, Mayo Clinic Florida, Jacksonville, FL; Stephen Scelsa, MD, Theresa Imperato, RN, Mount Sinai Beth Israel Medical Center, New York, NY; Leo McCluskey, MD, Lauren Elman, MD, Mary Kelley, RN, MSN, CRNP, University of Pennsylvania, Philadelphia, PA; Kimberly Goslin, MD, Britt Ash, RN, BSN, Providence Medical Center, Portland OR; Ghazala Hayat, MD, Waseem Baig, St. Louis University, St. Louis, MO; Jeremy Shefner, MD, PhD, Mary Lou Watson, BA, RRT, CCRP, SUNY Upstate Medical University, Syracuse, NY; April McVey, MD, Richard Barohn, MD, Sally Dwyer, University of Kansas, Kansas City, KS; Edward Kasarskis, MD, PhD, Kathie Vanderpool, RN, BS, CCRP, University of Kentucky, Lexington, KY; Carlayne E. Jackson, MD, FAAN, Pamela Peden Kittrell, RN, MSN, CCRC, University of Texas Health Science Center, San Antionio, TX; Rup Tandan, MD FRCP, Ruth Ann Rhodes, RN, University of Vermont Medical Center ALS Clinic, Burlington, VT; Michael A. Elliott, MD, FAAN, Julie Hodapp, MD, Piper Paul, RN, Sonja Zimmer, LPN, Virginia Mason Medical Center, Seattle, WA; James Caress, MD, Theresa Johnston-Crews, RN, BSN, MBA, Sue K. Humphries, LMSW, Wake Forest University, Winston-Salem, NC.

Study Steering Committee Members: Kevin Boylan, MD, Jacksonville, FL; Catherine Lomen-Hoerth, MD, PhD, San Francisco, CA; Todd Levine, MD, Phoenix, AZ; Mary Lyon, RN, MSN, Woodland Hills, CA; Kim Maginnis, MBA Washington, DC; Rup Tandan, MD, FRCP, Burlington, VT.

Declaration of interest

The authors obtained research funding for this study from The ALS Association. Kimberly Maginnis is an employee and Mary Lyon is a Consultant for The ALS Association. The authors alone are responsible for the content and writing of this paper.

Supplementary material Supplementary material for this article is available via the supplementary tab on the article's online page at http://dx.doi.org/10.3109/21678421.2015.1091478