Patient-reported Needs, Non-motor Symptoms, and Quality of Life in Essential Tremor and Parkinson's Disease

BACKGROUND: Non-motor symptoms, quality of life, service needs, and barriers to care of individuals with movement disorders are not well explored. This study assessed these domains within a sample of individuals with essential tremor (ET) and Parkinson's disease (PD). METHODS: A survey exploring symptoms, needs, and barriers to care was disseminated to a convenience sample (N = 96) of individuals with a primary diagnosis of ET (N = 19) or PD (N = 77). RESULTS: Similarities in overall quality of life and impact on daily functioning were found across individuals with ET and PD. Noteworthy differences included endorsement of different types of service needs and utilization patterns and fewer non-motor symptoms reported among those with ET (M = 6.1, SD = 2.4) than those with PD (M = 10.4, SD = 3.4). Non-motor symptoms significantly impacted movement disorder-related quality of life for both diagnostic groups, but this relationship was stronger for individuals with ET, t(12) = 3.69, p = 0.003, β = 0.73 than with PD, t(56) = 4.00, p<0.001, β = 0.47. Individuals with ET also reported higher rates of stigma (31.6% vs. 7.8%) and greater impact of non-motor symptoms on emotional well-being, R(2) = 0.37, F(1, 13) = 7.17, p = 0.020. DISCUSSION: This is the first study to describe and compare the needs, barriers to care, and impact on quality of life of two distinct movement disorder groups. Our results support the recent efforts of the field to identify interventions to address the non-motor symptoms of movement disorders and indicate need for greater appreciation of the specific differences in symptoms and quality of life experienced across movement disorder diagnoses.