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. 2017 Aug 1;11(4):289–297. doi: 10.1302/1863-2548.11.170042

Table 2.

Measurement tools used in the general assessment of mucopolysaccharidoses (MPS) patients.

Type Sections Age groups Assessor
Specific tools
MPS-PPM (Original)
MPS-Physical Performance
Measure
I 7 arm function tests
4 leg function tests
2 endurance tests
MPS-PPM (Modified) (Haley) I 8 timed functional tests
2 endurance tests
MPS-HAQ
MPS Health Assessment
Questionnaire
All 52-item questionnaire > 8 years Caregivers
HS Focus
Hunter Syndrome-Functional
Outcomes for Clinical
Understanding Scale
II 6 functional domains
2 additional domains
  • Satisfaction

  • Botheredness

Patient version
Parent version
Generic tools
CHAQ
Childhood Health Assessment
Questionnaire
8 domains (30 items)
  • Functional capacity

  • Activities of daily living

CHQ
Childhood Health Questionnaire
12 health concepts
  • Physical and

  • Psychosocial health status

Patient version
Parent version – 2
additional concepts
HUI-3
Health Utilities Index-3
8 attributes
  • describe patient experience of therapy

  • the long-term outcomes of disease or therapy

  • the efficacy of health care interventions

  • the health status of general populations