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BrainWorks

Measuring Disease Activity and Outcome

Rheumatologists at SickKids use several tools to measure outcome in children that are being treated for CNS vasculitis. These tools are listed below.

(Note: these tools will be provided to researchers participating in the BrainWorks study).

List of clinical assessment tools:

Quality of Life Measures:

Rehabilitation Outcome Measures:


PSOM: Pediatric Stroke Outcome Measure (Modified)[1]

  • PSOM is a standardized questionnaire to be completed by the doctor for the affected child. The PSOM is a short neurologic examination evaluating neurological  deficits and function across five domains:
    1. Sensorimotor on the right side
    2. Sensorimotor on the left side
    3. Language production
    4. Language comprehension
    5. Cognition or behavior
  • Each domain is scored according to the level of functioning and the interference on daily life activities (DLA): 0 (normal), 0.5 (mild deficit, normal function), one(moderate deficit, decreased function), or two (severe deficit, missing function).
  • The doctor can use this tool to assess the child’s neurological outcome at follow-up visits. 

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PGA: Physician Global Assessment[2]

  • Physician Global Assessment evaluates overall disease activity, reversible impairment, and permanent damage of the child.
  • This assessment is a 10 centimeter visual analog scale with 0 being no disease activity  and 10 being maximum disease activity.
  • At SickKids, this is part of standard of care and the PGA is completed at every visit.

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CAT-B: Neurocognitive Assessment Tool – BrainWorks

  • Neurocognitive assessment evaluates a wide range of neuropsychological abilities including overall intellectual ability, language, attention, learning, memory, visual perception, visual-motor skills, executive skills and early academic skills. 
  • The assessment typically consists of a standardised battery of tests. Testing is recommended  in all patients with inflammatory brain disease at baseline and then yearly thereafter. 
  • This testing is important in identifying neurocognitive deficits and in monitoring progress over time. It helps to identify a child's strengths and weaknesses and guides early rehabilitation to optimize functional outcome.

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Quality of Life Measures 

PedsQL: Pediatric Quality of Life Inventory[3]

  • The PedsQL is a tool that is used to measure the health-related quality of life (HRQOL) of children affected by chronic diseases (such as CNS vasculitis) and their parents.  It is a 23 item questionnaire that asks about:
    • Physical Functioning (8 items)
    • Emotional Functioning (5 items)
    • Social Functioning (5 items)
    • School Functioning (5 items)
  • Three summary scores are then generated, namely a total scale score, physical health summary score, and psychosocial health summary score.

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SMI-iLY: Simple Measure of Impact of Illness in Youngsters[4]

  • The SMI-ily is a brief, easily understood, valid, and reliable pediatric quality of life (QOL) scale.  It is used to measure the health-related quality of life (HRQOL) of children affected by chronic diseases (such as CNS vasculitis) and their parents. 
  • It has parallel child and parent reports with a 5-faces scale (, , etc.) for responses.  SMI-ily encompasses 4 domains, namely:
    • Effect of disease on self
    • Limitations related to disease
    • Social impact of disease
    • Burden of disease

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Rehabilitation Outcome Measures

There is currently no specific rehabilitation outcome tool validated for use in CNS Vasculitis. Research is currently underway to validate a motor outcome tool for use in CNS Vasculitis patients.  In the meantime, these outcome measures may help clinicians to assess areas of impairment and identify a child’s rehabilitation needs:     

BOT-2: Bruininks-Oseretsky Test of Motor Proficiency, Second Edition[5]

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GMFM: Gross Motor Functional Measure[6]

  • Designed to assess changes in gross motor function in children with Cerebral Palsy and regularly used in children with acquired brain injury[6].
  • More information is available at: http://www.canchild.ca/en/measures/gmfm.asp.
  • Children’s Orientation and Amnesia Scale (COAT)[7].
  • Standardized measures  designed to assess cognitive functioning in children and adolescents with an acquired brain injury.
  • Composed of 16 items, the COAT addressed 3 areas of cognitive functioning:  general orientation, temporal orientation, and memory.

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References:

  1. Kitchen L, Westmacott R, Friefeld S, MacGregor D, Curtis R, Allen A, Yau I, Askalan R, Moharir M, Domi T, deVeber G. The Pediatric Stroke Outcome Measure: A Validation and Reliability Study. Stroke. 2012;43:1602-1608.
  2. Sztajnbok F, et al,.Discrepancy between patient and physician in assessment of global severity in early rheumatoid arthritis. Rheumatology (Oxford, England) 2007;46:141–145
  3. Varni, JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care, 1999. 37 (2): p. 126-39.
  4. Moorthy, LN, et al. Multicenter validation of a new quality of life measure in pediatric lupus. Arthritis Rheum, 2007. 57 (7): p. 1165-73.
  5. Moorthy LN, Peterson MG, Baratelli M, Harrison MJ, Onel KB, Chalom EC, Haines K, Hashkes PJ, Lehman TJ. Review of the Bruininks-Oseretsky Test of Motor Proficiency, Second Edition (BOT-2). Physical & Occupational Therapy in Pediatrics 2007;27:87-102.
  6. Russell D RP, et al,. Gross Motor Function Measure. 2nd ed. Toronto, Ontario, Canada; 1993.
  7. Iverson GL, Iverson AM, Barton EA. The Children’s Orientation and Amnesia Test: Education status is a moderator variable in tracking recovery from TBI. Brain Injury 1994; 8(8): 685-688.

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