Defining the Treatment Gap: What Essential Tremor Patients Want That They Are Not Getting

Louis, Elan D.; Rohl, Brittany; Rice, Catherine

Background: Patient-centeredness (i.e., providing care that is responsive to individual patient preferences) is increasingly recognized as a crucial element of quality of care.

Methods: A six-item patient-centeredness questionnaire was devised to assess the self-perceived needs of ET patients. A link to the questionnaire was included in the monthly e-newsletter of the International Essential Tremor Foundation. The questionnaires were completed online and data were available in electronic format.

Results: There were 1,418 respondents. One in three respondents (i.e., 31.4%) indicated that the doctor was not even “moderately well-educated” about ET. Only 11.8% of respondents were satisfied with their care. Respondents raised a multiplicity of issues that were not being addressed in their current care. The top items were: psychological services and support (33.9%), physical or occupational therapy (28.6%), handling embarrassment and social effects of tremor (15.8%), feelings of not being in control (13.7%), a detailed report and a more quantitative way of assessing tremor and tracking progression (12.7%), better counseling about current treatment and medications (11.9%), empathy, compassion and a feeling of being heard (11.6%), a treatment approach other than just medications and surgery (11.2%), a discussion of all of symptoms aside from tremor (e.g., cognition, balance).

Conclusions: Patients with ET identified a broad range of issues that they felt were not addressed in their treatment; indeed, only one-in-ten patients reporting that they were satisfied with their care. It is hoped that patient-centered approaches such as this will lead to improved models for the care of patients with this common chronic disease.


Also Published In

Tremor and Other Hyperkinetic Movements

More About This Work

Academic Units
Center for Parkinson's Disease and Other Movement Disorders
Published Here
October 15, 2015