Yasmin is a sixteen-year-old girl with athetoid cerebral palsy, GMFCS level IV. She is passionate about her studies and has already gone to check out a few colleges. She is thinking about living in a dorm. As her PT, are there measures that will help you learn about her current level of participation? You know about her activity capacity, but not as much about her current level of performance – and that is what will matter as she transitions to more independent living. After some thought, you decide to update the TRANSITION-Q for health management skills and the ACTIVLIM-CP for daily activities. Additionally, you are going to update Yasmin’s COPM to prioritize her individual goals.
I’ve recently discovered the world of performance and participation measures. They can begin to bridge the gap between physical therapy appointments and higher participation in daily life. Some measures are free and translated into many languages. Other measures assess global performance change after PT intensives, Botox, or surgery. Many of these are new to me, aside from the CHAQ, PEM-CY, COPM, and GAS. It is exciting to think of the potential and I look forward to trying them out in the months to come!
- Individualized Measures:Canadian Occupational Performance Measure (COPM). An individualized measure. Self-report by 8 yrs +, possibly from 5 and older. Parents are clients before age 5, or if child is unable to communicate. Here is a CP specific referenceGoal Attainment Scale (GAS) 0 yrs+ An individualized outcome measure.
- Participation/Peformance Measures:ACTIVLIM-CP– Unidimensional scale measuring global activity performance/daily activities for children. It combines UE/LE performance. Useful for PT intensive/Botox followup. 2-18 yrs.Pediatric Outcomes Data Collection Instrument (PODCI) Transfers, pain, mobility, sports, satisfaction with care, for disorders having a musculoskeletal impact , 2-10 yrs. Activities Scale for Kids-Performance (ASKp) child questionnaire performance version (Capacity version is listed here). Personal care, dressing, locomotion, play, standing skills & transfers. JRA, Spina Bifida, Muscular Dystrophy, CP. 5-15 yrs
- Gait Outcomes Assessment List (GOAL) 7-16 yrs- gait performance section parent report for kids who are ambulant w/ CP. Includes Goal setting.
- Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) GMFMCS IV & V / positioning, personal care, comfort & emotions, communication, health, quality of life reported by caregiver of > 6 mo usually for children 5-19 yrs
- Child Health Assessment Questionnaire (CHAQ) 1-19 yrs. parent proxy before age 8. JRA specific.
- Participation and Environment Measure-Children & Youth (PEM-CY) Participation & environmental factors in home, school & community. There is a cost-free parent version in the link. 5-17 yrs
- Child Engagement in Daily Life Measure. Young children with CP.
- Children’s Assessment of Participation & Enjoyment (CAPE) & Preferences for Activities of Children (PAC) Recreational, physical, social, skill-based, self-improvement 6-21 yrs. (Packaged together) but PAC looks at child preferences in additon to performance.
- School Function Assessment (SFA) Participation (also has task performance and activity performance sections). 6-12 yrs.
- World Health Organization Disability Assessment Schedule-Child (WHODAS 2.0) General assessment for measuring health and disability across cultures. Measures cognition, mobility, self-care, getting along, life activities, participation. 18+ yrs. Child version in development.
- Quality of Life Measures:Pediatric Quality of Life Inventory (PedsQL) Physical, emotional, social, school functioning. Parent proxy report form 2+ years, or self report form 5-18 yrs. PedsQL-CP module and othersCerebral Palsy Quality of Life (CPQOL) 4-12 yrs/ teen version 13-18 yrsLife Satisfaction Questionnaire-9 (LISAT-9) Life as a whole/relationships. 13 yrs +
- Pediatric Symptom Checklist (PSC) Psychosocial screen for adolescents 11 yrs and up
- Quality of Life in Neurological Disorders (Neuro-QoL)- Highly recommended for Congenital Muscular Dystrophy, 8-17 yrs children with neurological condition.
- Pediatric Sleep Questionnaire (PSQ) 2-18 yrs.
- Pediatric Urinary Incontinence Quality of Life Tool (PIN-Q)- non neurogenic underlying cause. 5-11 yrs.
- Transition Scale:TRANSITION-Q: Self management of health starting at 12 years
2 thoughts on “Tests & Measures for Participation”
The National Institute of Neurological Disorders and Stroke (NINDS) and the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM) partnered to develop a list of common data elements (CDE) for cerebral palsy in March 2018. This is referred to as the NINDS/AACPDM CDE Version 1. Here is the article that discusses this: https://onlinelibrary.wiley.com/doi/epdf/10.1111/dmcn.13723 (see page 7 for highly recommended tools). Additionally, here is the website for further info: https://www.commondataelements.ninds.nih.gov/CP.aspx#tab=Data_Standards
Toolbox for Spina Bifida https://www.aapmr.org/docs/default-source/quality-practice/qtb_spina_bifida_06-02.pdf?sfvrsn=2