Abstract
<strong>Background:</strong> Although the motor and non-motor features of essential tremor (ET) have been characterized in detail, it is not known whether ET patients suffer psychologically and whether those who are close to them consider them to be suffering in this way. <strong>Methods:</strong> Fifty ET patients and 50 ‘‘close others’’ (COs), identified by patients ‘‘as someone who knows you well and sees you often’’ and who can ‘‘provide a different perspective on your well-being’’, reported their own depressive symptoms, daily stress, and perceptions of patient psychological suffering and patient overall suffering with validated scales. ET patients’ tremor severity, duration, disability, cognition, and number of medications were also assessed. <strong>Results:</strong> ET patients reported levels of psychological suffering within the range documented in arthritis and dementia patients from previous studies, and COs perceived significantly more psychological suffering in patients than patients reported themselves. Regression models, controlling for tremor severity, duration, and disability revealed that patients’ greater psychological suffering was associated with greater patient depression. The greater perceptions of COs of patient psychological and overall suffering were associated with greater CO depression and daily stress. Sensitivity analysis showed that patients’ cognitive status or number of medications did not affect the results. <strong>Discussion:</strong> Multidisciplinary teams caring for ET patients should look beyond simple clinical ET indicators. They should be aware of patient experiences and perceptions of COs of psychological and overall suffering. This will help guide the development of evidence-based, supportive interventions that improve communication about the needs of ET patients and those who are close to them.
Highlights
Essential tremor (ET) is one of the most prevalent neurological diseases; its hallmark feature is action tremor,[1,2,3,4] other motor features may be present.[5,6,7,8] The disease is associated with functional disability[9] and diminished quality of life.[10]
The motor and non-motor features of essential tremor (ET) have been characterized in some detail, it is not known whether ET patients are suffering psychologically and whether those who are close to them (i.e., ‘‘close others’’ [Close Others. Degrees of freedom54 (CO)], their family members and friends) consider them to be suffering in this way
There were no significant differences between patient and CO reports (p.0.77). This is the first study to examine the experiences of ET patient suffering, COs’ perceptions of ET patient suffering, and the associations with depression for both patients and COs
Summary
Essential tremor (ET) is one of the most prevalent neurological diseases; its hallmark feature is action tremor,[1,2,3,4] other motor features may be present (i.e., intention tremor or mild ataxia).[5,6,7,8] The disease is associated with functional disability[9] and diminished quality of life.[10]. Psychological Suffering in Essential Tremor worsening of symptoms over time even when their tremor remains stable.[11] In addition to motor features, patients may experience a range of non-motor features, including anxiety, social phobia, depression, and sleep dysregulation.[12,13,14] a significant portion of ET patients (30–60%) have cognitive deficits, which range from subclinical abnormalities to mild cognitive impairment (MCI) and dementia.[10,15,16] the motor and non-motor features of ET have been characterized in some detail, it is not known whether ET patients are suffering psychologically and whether those who are close to them (i.e., ‘‘close others’’ [COs], their family members and friends) consider them to be suffering in this way. This will help guide the development of evidence-based, supportive interventions that improve communication about the needs of ET patients and those who are close to them
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