Defining the Treatment Gap: What Essential Tremor Patients Want That They Are Not Getting. (14th August 2015)

• Record Type: Journal Article
• Authors: Louis, Elan D.; Rohl, Brittany; Rice, Catherine
• Editors: Benito-Leon, Julian
• Is Part Of: Tremor and other hyperkinetic movements. Volume 5(2015)
• Publication Date: 2015-08-14
• Subjects: Essential tremor -- treatment -- clinical -- patient-centeredness; Tremor -- Periodicals; Hyperkinesia -- Periodicals; 616.8
• DOI: 10.7916/D87080M9
• Languages: English
• ISSNs: 2160-8288

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.