A survey of stress among amyotrophic lateral sclerosis care providers

Abstract

Amyotrophic lateral sclerosis (ALS) is a uniformly fatal disease. In the US, care is concentrated in specialized clinics. ALS health care providers likely experience stress, but levels and associated factors and methods to manage them are not known. A questionnaire was designed to assess levels of emotional stress among ALS clinic providers (neurologists and clinic managers) at time of diagnosis, during care of the patient, and at time of the patient's death. Also included were questions about diagnostic practice patterns. Sixty-eight Muscular Dystrophy Association and ALS Association certified clinics were surveyed with a 47% response rate. Stress levels ranged from very severe to none at the various clinical stages but did not differ significantly between neurologists and managers. Stress tended to be lower in more experienced providers, although not uniformly so for all situations and time-points. Stress reduction techniques were rated as more effective for managers than for neurologists. Providers reported high levels of job satisfaction but a significant number gave consideration to leaving their positions due to stress and operational issues. In conclusion, stress is experienced by ALS clinic providers and managed by a variety of methods but with limited success.

Key words::

• Amyotrophic lateral sclerosis
• motor neuron disease
• care provider stress
• work satisfaction

Acknowledgements

Portions of this research were funded by the Richard K. and Shirley S. Hemingway Foundation. M. Bromberg is a medical advisor for Accordant Health Care, is on the speakers’ bureau for Talecris Biotherapeutics, is a Medical advisor RX Solutions, and receives royalties from ‘Handbook of Peripheral Neuropathy’.

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