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

Abstract

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 (N596) of individuals with a primary diagnosis of ET (N519) or PD (N577). 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 (M56.1, SD52.4) than those with PD (M510.4, SD53.4). 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)53.69, p50.003, b50.73 than with PD, t(56)54.00, p,0.001, b50.47. 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 50.37, F(1, 13)57.17, p50.020. 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.

Unmet needs of people with Parkinson’s disease: A cross‐sectional study

“…Unmet needs were significantly high when people with PD had severe NMS. This is consistent with a previous study where people with PD selected symptom management as the greatest need (Lageman et al, ). People with PD have often reported the need for management of NMS (Buetow et al, ).…”

“…We developed an unmet needs questionnaire through a literature review, as there were no instruments to assess unmet needs specific to PD. The recommendations of Lageman, Cash and Mickens were used to develop an assessment of needs of people with PD (Lageman, Cash, & Mickens, ). The questionnaire contained four subscales regarding unmet needs: (a) physical needs (nine items); (b) social/spiritual/emotional needs (seven items); (c) need for certainty (six items); and (d) therapeutic needs (11 items).…”

“…The unmet needs questionnaire was developed by the research team after the preliminary items were constructed and the content validity was confirmed by experts. First, based on Lageman et al's study (), we identified the main needs of people with PD. Then, we developed a total of 38 items of unmet needs based on Kim’s, Kim, Kang, and Kim () nursing needs classification (Kim et al, ).…”

Non-Motor Symptoms of Essential Tremor Are Independent of Tremor Severity and Have an Impact on Quality of Life

“…There are additional features accompanying the disease besides pure motor abnormalities. 29 Most investigations published to date have focused on isolated symptoms including neuropsychiatric abnormalities (e.g., cognitive impairment 30 and depression 13 , 14 ) and QoL. 17 Another interesting and persistent question is whether NMS in ET are a primary disease feature or secondary reactive symptoms.…”

Randomized controlled expressive writing pilot in individuals with Parkinson’s disease and their caregivers

“…All participants also completed the Linear Analogue Self Assessment (LASA; [ 32 ], which assesses dimensions of physical, emotional, spiritual, intellectual, and overall QOL using single items. A recent needs assessment survey used this instrument to capture overall QOL in a sample of high functioning PD patients [ 31 ]. Cronbach’s alpha was not calculated for this scale because interpretation is done at the single-item level.…”