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) |