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Table 1 Symptom Profile for children with neurodegenerative condition (SProND) questionnaire

From: Quality of life and symptom burden in children with neurodegenerative diseases: using PedsQL and SProND, a new symptom-based scale

  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