Multidisciplinary ALS clinics in the USA: A comparison of those who attend and those who do not

Abstract

Optimization of quality of life (QoL) is perceived by many as the primary goal for patients with amyotrophic lateral sclerosis (ALS), often via multidisciplinary clinics (MDCs). The aim of this study was to examine the differences in QoL, physical function, and social problem-solving skills for individuals with ALS attending MDCs compared to non-attenders. An online survey was completed by 295 people with ALS in the United States. Results showed there were no differences between the groups in global QoL, measures of physical function, or social problem-solving skills. Attenders and non-attenders of MDCs reported similar use of treatments for their ALS, although attenders received more health care services from nurses, therapists, social workers, dieticians, and in-home care providers. In conclusion, oher instruments may be needed to assess the benefits of MDCs. Qualitative studies of attenders and non-attenders of MDCs may reveal important differences that could guide care.

Keywords::

• Multidisciplinary care
• quality of life
• problem solving
• amyotrophic lateral sclerosis

Acknowledgments

This study is derived from work performed by Jared Young as his dissertation study. The authors thank the patients, the ALS Association, Paul Wicks of Patientslikeme.com and the ALS Centers of Excellence for their contributions to this study. This work was supported by the Paul and Harriet Campbell Fund for ALS Research, the ALS Association Greater Philadelphia Chapter, and many other private donations to the Penn State Hershey ALS Center.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

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