A new white paper, “Assessing the Full Impact of Essential Tremor on Patient Quality of Life and Finances in the United States”, discusses the financial and emotional burden of essential tremor on patients and their caregivers.

The survey of 272 patients with ET and their caregivers was commissioned by Insightec and prepared by Frost & Sullivan, a research and consulting organization to get a better understanding of the true costs of living with essential tremor. Medicare beneficiaries make up a significant portion of the ET population. Surveyed patients living with ET for many years reported a progressive increase in anxiety and fear of the future as their tremor began to impact their independence. Furthermore, as symptoms continued to progress, survey respondents expressed a decline in their own perception of their health with 77% of patients with moderate to severe ET reporting living a poor quality of life.

While the majority of survey responders reported having mild tremor, 69% of them struggle to perform basic daily tasks. Essential tremor usually progresses later in life to the point where shaving, tying shoe laces, signing a check or other daily tasks may simply become impossible to do without assistance.

The top tasks that respondents experienced at least moderate difficulty performing included writing, using devices that require precise hand movements, eating and drinking, preparing meals, maintaining hygiene and dressing. Interestingly, one-third of patients reported taking no medications and had not had surgical intervention for their essential tremor.

A few key highlights:

  • 75% of surveyed ET patients feel that their condition results in a significant impact on their self-esteem and confidence
  • 77% of respondents are unable to relieve this added stress with previously enjoyed hobbies
    ET negatively influenced work opportunities for surveyed ET patients, 43% experience difficulty performing job duties, and 29% were forced to retire early

The white paper concludes by recommending that clinicians, patient advocates, policymakers and the industry should collectively unite behind initiatives to address the full burden of ET on patients’ quality of life and finances.

Download the Frost & Sullivan whitepaper

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