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. 2020 Jul 15;6:100. doi: 10.1186/s40814-020-00641-x

Table 1.

Study outcome assessments

Assessment Description Approximate duration Type of data collected
Psychiatric
Beck’s Depression Inventory A 21-item questionnaire to identify mild mood disturbances, borderline clinical depression, moderate depression, severe depression or extreme depression. Freely available 2 min Quantifiable
Hamilton Depression Rating Scale A widely used and well-validated tool for measuring a patient’s depression, identifying mild, moderate, severe and very severe levels of depression 15–20 min Quantifiable
Generalised Anxiety Disorder-7 A 7-item questionnaire to identify mild, moderate, or severe levels of anxiety. Freely available < 1 min Quantifiable
Hamilton Anxiety Rating Scale A widely used and well-validated tool for measuring anxiety able to indicate mild, moderate, and severe levels of anxiety 15–20 min Quantifiable
Mini International Neuropsychiatric Interview An interview that covers a wide range of neuropsychiatric disorders including depression, panic disorders, anxiety, obsessive-compulsive disorder (OCD) and post-traumatic stress disorder (PTSD) 15–20 min Yes/no
Sleep
Sleep Disorders Questionnaire A 16-item questionnaire that assesses insomnia, psychiatric disorders, circadian rhythm disorder, movement disorders and parasomnias. Freely available 1.5 min Likert scale
Pittsburgh Sleep Quality Index A questionnaire that measures sleep quality over a 1-month period, using 7 components to create a global score. Freely available 2–5 min Likert scale
Epworth Sleepiness Scale An 8-item questionnaire that measures the likelihood of dozing in different situations. Freely available < 1 min Likert scale
Pain
Chronic Pain Acceptance Questionnaire A 20-item questionnaire measuring the ability of the participant to accept their pain and carry on with daily activities despite the pain. Freely available 2 min Quantitative
Pain Catastrophising Scale A 13-item questionnaire that measures the participants’ thoughts and feelings about pain 2 min Quantitative
Short-form McGill Questionnaire (pain description) A questionnaire assessing the natures of the pain experienced by the participant. Freely available but copyright protected, requiring permission from Ronald Melzack for distribution 2 min Likert scale
Pain Time Course Patterns Participants select from a series of diagrams to indicate the best pattern of their pain experience during the course of the day < 1 min Qualitative
Quality of life
Short-Form 36 Health Survey A 36-item questionnaire that gathers information about the participants views about their health. Freely available 2 min Quantitative
Motor symptoms
BFMDRS Disability Scale A patient completed report of disability in daily life activities. This is combined with an objective clinician scored standardised clinical examination to give the ‘gold standard’ tool for the assessment of dystonia severity 2 min Likert scale (quantitative when combined with clinical examination score)
BFMDRS Clinical Examination A standardised videotaped clinical examination of following the Burke-Fahn-Marsden Dystonia Rating Scale (BFMDRS) protocol that will be rated by two movement disorder experts 10 min Clinician scored video assessment (quantitative when combined with disability scale score)

BFMDRS Burke-Fahn-Marsden Dystonia Rating Scale