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Tremor Other Hyperkinet Mov (N Y). 2015 Aug 14;5:331. doi: 10.7916/D87080M9. eCollection 2015.

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

Author information

1
Department of Neurology, Yale School of Medicine, Yale University, New Haven, CT, USA ; Department of Chronic Disease Epidemiology, Yale School of Public Health, Yale University, New Haven, CT, USA ; Center for Neuroepidemiology and Clinical Neurological Research, Yale School of Medicine, Yale University, New Haven, CT, USA.
2
Department of Neurology, Yale School of Medicine, Yale University, New Haven, CT, USA.
3
International Essential Tremor Foundation, Lenexa, KS, USA.

Abstract

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 essential tremor (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%), and a discussion of all symptoms aside from tremor (e.g., cognition, balance).

DISCUSSION:

Patients with ET identified a broad range of issues that they felt were not addressed in their treatment; indeed, only one in 10 patients reported 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.

KEYWORDS:

Essential tremor; clinical; patient-centeredness; treatment

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