Text Table 1
Interview questions for Survey on Living with Neurological Conditions in Canada (SLNCC)
Before beginning the questions about neurological conditions, respondents were told: “Now, I'd like to ask some questions about neurological conditions, which are conditions that affect the brain, spinal cord, nerves or muscles. We are interested in conditions which are expected to last or have already lasted six months or more and have been diagnosed by a doctor or other health professional.”
| Condition | SLNCC question | Variable name(s) | Interviewer notes |
|---|---|---|---|
| Pain | Are you usually free of pain or discomfort? | HUNX_29 | |
| Spinal cord trauma | Do you have a neurological condition caused by a spinal cord injury? AND: Was the spinal cord injury caused by trauma? A traumatic spinal cord injury is damage to the spinal cord caused by physical impact, for example, a car crash or a fall that results in paralysis, loss of strength, loss of sensation, or difficulty controlling the bowel or bladder. | DINX_16A and DINX_16B | A neurological condition is a disorder of the brain, spinal cord, nerves or muscles that can result in symptoms such as paralysis, weakness, poor coordination, loss of sensation, seizures, confusion, pain and altered levels of consciousness. A spinal cord injury is damage to the spinal cord that results in paralysis, loss of strength, loss of sensation, or difficulty controlling the bladder or bowel. Do not include back pain if this is the only symptom of spinal cord injury. If the respondent says they have been diagnosed with a spinal cord injury, but are not currently experiencing symptoms, classify their response as "No." |
| Dystonia | Do you have dystonia? | DINX_08A | If the respondent says they have been diagnosed with dystonia, but are not currently experiencing symptoms, classify their response as “Yes.” |
| Muscular dystrophy | Do you have muscular dystrophy? | DINX_07A | If the respondent says they have been diagnosed with muscular dystrophy, but are not currently experiencing symptoms, classify their response as “Yes.” |
| Brain tumour | Do you have a neurological condition caused by a brain or spinal cord tumour? Is this a brain tumour? | DINX15BA | Include both malignant and benign tumours. Include tumours that start in the brain or spinal cord and cancer from elsewhere in the body that has spread to the brain or spinal cord. If the respondent says they have been diagnosed with a brain or spinal cord tumour, but are not currently experiencing symptoms, classify their response as "No." |
| Spina bifida | Do you have spina bifida? | DINX_05A | If the respondent says they have been diagnosed with spina bifida, but are not currently experiencing symptoms, classify their response as “Yes.” |
| Multiple sclerosis | Do you have multiple sclerosis? | DINX_02A | If the respondent says they have been diagnosed with multiple sclerosis, but are not currently experiencing symptoms, classify their response as “Yes.” |
| Cerebral palsy | Do you have cerebral palsy? | DINX_04A | If the respondent says they have been diagnosed with cerebral palsy, but are not currently experiencing symptoms, classify their response as “Yes.” |
| Migraine headaches | To begin, do you have migraine headaches that have been diagnosed by a health professional? | DINX_01A | If the respondent says they have been diagnosed with migraine headaches, but are not currently experiencing symptoms, classify their response as “Yes.” |
| Stroke | Do you suffer from the effects of a stroke? Have you ever had a stroke (that has been diagnosed by a health professional)? |
DINX_14A | A stroke is a sudden loss of brain function that occurs when the blood flow supplying oxygen to a part of the brain is interrupted. Damage to the brain caused by a stroke can result in difficulties with movement, vision, speech, language, and cognition. If the respondent says they have been diagnosed with a stroke, but are not currently experiencing symptoms, classify their response as "No." |
| Epilepsy | Do you have epilepsy? | DINX_03A | If the respondent says they have been diagnosed with epilepsy, but are not currently experiencing symptoms, classify their response as “Yes.” |
| Parkinson’s disease | Do you have Parkinson’s disease? | DINX_10A | If the respondent says they have been diagnosed with Parkinson’s disease, but are not currently experiencing symptoms, classify their response as “Yes.” |
| Amyotrophic lateral sclerosis (other conditions) | Do you have ALS (Lou Gehrig's disease/amyotrophic lateral sclerosis)? | DINX_11A | If the respondent says they have been diagnosed with ALS, but are not currently experiencing symptoms, classify their response as “Yes.” |
| Huntington’s disease (other conditions) | Do you have Huntington’s disease? | DINX_12A | If the respondent says they have been diagnosed with Huntington’s disease, but are not currently experiencing symptoms, classify their response as “Yes.” |
| Tourette’s syndrome (other conditions) | Do you have Tourette’s syndrome? | DINX_09A | If the respondent says they have been diagnosed with Tourette’s syndrome, but are not currently experiencing symptoms, classify their response as “Yes.” |
| Hydrocephalus | Do you have hydrocephalus? | DINX_06A | If the respondent says they have been diagnosed with hydrocephalus, but are not currently experiencing symptoms, classify their response as “Yes.” |
| Dementia | Do you have Alzheimer’s disease or any other dementia? | DINX_13A | If the respondent says they have been diagnosed with Alzheimer's disease or other dementia, but are not currently experiencing symptoms, classify their response as “Yes.” |
| Excluded conditions | |||
| Brain trauma | Do you have a neurological condition caused by a brain injury? AND: Was the brain injury caused by trauma? A traumatic brain injury is damage to the brain caused by physical impact, for example, a hit to the head, a car crash or a fall that results in difficulties with attention, cognition, language, memory, behaviour or movement. | DINX_17A and DINX_17C | A brain injury is damage to the brain that results in difficulties with attention, cognition, language, memory, behaviour or movement. If the respondent says they have been diagnosed with a brain injury, but are not currently experiencing symptoms, classify their response as "No." |
| Brain injury (non-traumatic) | Do you have a neurological condition caused by a brain injury? AND NOT: Was the brain injury caused by trauma? A traumatic brain injury is damage to the brain caused by physical impact, for example, a hit to the head, a car crash or a fall that results in difficulties with attention, cognition, language, memory, behaviour or movement. | DINX_17A and NOT DINX_17C | A brain injury is damage to the brain that results in difficulties with attention, cognition, language, memory, behaviour or movement. If the respondent says they have been diagnosed with a brain injury, but are not currently experiencing symptoms, classify their response as "No." |
| Spinal cord tumour | Do you have a neurological condition caused by a brain or spinal cord tumour? Is this a spinal cord tumour? | DINX15BB | Include both malignant and benign tumours. Include tumours that start in the brain or spinal cord and cancer from elsewhere in the body that has spread to the brain or spinal cord. If the respondent says they have been diagnosed with a brain or spinal cord tumour, but are not currently experiencing symptoms, classify their response as "No." |
| Spinal cord injury (non-traumatic) | Do you have a neurological condition caused by a spinal cord injury? AND NOT: Was the spinal cord injury caused by trauma? A traumatic spinal cord injury is damage to the spinal cord caused by physical impact, for example, a car crash or a fall that results in paralysis, loss of strength, loss of sensation, or difficulty controlling the bowel or bladder. | DINX_16A and NOT DINX_16B | A neurological condition is a disorder of the brain, spinal cord, nerves or muscles that can result in symptoms such as paralysis, weakness, poor coordination, loss of sensation, seizures, confusion, pain, and altered levels of consciousness. A spinal cord injury is damage to the spinal cord that results in paralysis, loss of strength, loss of sensation, or difficulty controlling the bladder or bowel. Do not include back pain if this is the only symptom of spinal cord injury. If the respondent says they have been diagnosed with a spinal cord injury, but are not currently experiencing symptoms, classify their response as "No." |
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