Table 1 Symptom Profile for children with neurodegenerative condition (SProND) questionnaire
How did the following symptoms affect your child in the past 3 months? | |||||
|---|---|---|---|---|---|
Seizure | No | < 1x/ month | Monthly (1-3x/ month) | Weekly (1-6x/ week) | Daily (> = 1x/ day) |
Neurobehavioural symptoms | |||||
Hyperactivity behaviour (Voluntary activities with extreme levels of activity) | No | Minimal | Mild | Moderate | Severe |
Aggressive behaviour Eg. biting/ hitting others | No | Minimal | Mild | Moderate | Severe |
Movements and mobility related | |||||
Involuntary movements | No | Minimal | Mild | Moderate | Severe |
Joint stiffness | No | Minimal | Mild | Moderate | Severe |
Muscle spasm (Non epileptic sustained muscle contraction) | No | Mild spasms induced by stimulation or exercise | Monthly (1-3x/ month) | Weekly (1-6x/ week) | Daily (> = 1x/ day) |
Breathing and swallowing | |||||
Swallowing difficulty | No | Full oral feeding with mildly thickened liquid | Full oral feeding with moderately thickened liquid | Partial oral feeding only | Non oral feeding |
Need for respiratory support | No | Use of oxygen during viral illness | Use of non-invasive ventilation during viral illness | Nocturnal oxygen/ non invasive ventilation | Whole day usage of O2/ non invasive ventilation or tracheostomy in situ |
Drooling | No | Mild and not requiring medication | Tolerable after use of medication | Persistent despite medications, need suction on as needed basis | Require suctioning at least once per day |
Daily activities | |||||
Pain Site(s): ________ Most severe site: _________ and its severity: mild/ moderate/ severe | No | < 1x/ month | Monthly (1-3x/ month) | Weekly (1-6x/ week) | Daily (> = 1x/ day) |
Constipation (Frequency of bowel opening) | 1x/ day (average) | > = 2x/ week | Once/ week | < once/ week | < = once/ 2 weeks |
Sleep problem Eg. Insomnia, day/night disturbance, night terror etc | No | < 1x/ month | Monthly (1-3x/ month) | Weekly (1-6x/ week) | Daily (> = 1x/ day) |
Anorexia/ nausea/ vomiting | No | < 1x/ month | Monthly (1-3x/ month) | Weekly (1-6x/ week) | Daily (> = 1x/ day) |
Urinary problem | No | Occasional leakage/ urgency or needing diapers at night | Frequent leakage/ urgency or requiring daytime use of diapers | Requiring intermittent catheterization | Requiring indwelling urinary catheter or nephrostomy |