Measuring global activity performance in children with cerebral palsy in West Africa: validation of an adapted version of the ACTIVLIM-CP questionnaire

Abstract

Purpose

To calibrate a West-African version of the ACTIVLIM-CP questionnaire (ACTIVLIM-CP-WA) for children with cerebral palsy (CP).

Materials and Methods

We recruited 287 children with CP of various age range: 2–6 years (n = 117, preschoolers), 6–12 years (n = 96, children) and 12–19 years (n = 74, adolescents). Caregivers of children of each age range completed the experimental version of the ACTIVLIM-CP-WA including 76 (preschoolers), 78 (children) and 76 (adolescents) global daily life activities. Responses were analyzed using the Rasch RUMM2030 software.

Results

The final West-African version of ACTIVLIM-CP including 31 items (both common and age-specific items) defined a unidimensional, linear scale with well-discriminated response categories. It presented a high internal consistency (R = 0.94). Moreover, all items were locally independent and the item difficulty hierarchy was invariant regarding caregivers’ education, children’s age and gender, MACS and GMFCS levels. The ACTIVLIM-CP-WA measures were significantly correlated (p < 0.05) with Gross Motor Function Classification System (ρ = −0.77), Manual Ability Classification System (ρ = −0.75), Box and Block test (dominant hand r = 0.51; non-dominant hand r = 0.49), One-minute walking test (r = 0.28), and Timed up and Go test (r = −0.40).

Conclusions

The ACTIVLIM-CP-WA questionnaire provides a valid and reliable tool that has the potential to follow children’s evolution and quantify changes consecutive to neurorehabilitation in Sub-Saharan Africa.

IMPLICATIONS FOR REHABILITATION

• The West-African version of the ACTIVLIM-CP questionnaire (ACTIVLIM-CP-WA) measures global activities requiring a combination of lower and upper extremities in children with cerebral palsy.

• As a Rasch-built scale, measures are unidimensional and linear to document changes in children with cerebral palsy from 2 to 19 years in Sub-Saharan Africa.

• Rehabilitation professionals are encouraged to use the ACTIVLIM-CP-WA questionnaire as a psychometrically robust assessment tool measuring the global performance in daily life activities in children with cerebral palsy in Sub-Saharan Africa.

Keywords:

• Cerebral palsy
• activities of daily living
• patient reported outcome measures
• psychometrics
• Africa

Acknowledgements

The authors would like to thank Damienne Houekpetodji, Judith Hounkannounon, Henri-Joël Djegui, Charlène Kakpossa, Nazir Chakirou, James Mazoumoko, Audrey Hounsa-Gansi, Pamela Kocouvi and Pax Houssou for their help in the data collection. We would also like to thank children and families for participating and Massimo Penta and Jean-Louis Thonnard for their advices in data analysis.

Ethical approval

The study was approved by local ethical committees of the different involved centers and hospitals. Caregivers of all participants provided their informed consent.

Author contributions

ESS, AC and YB performed the data analysis. All authors contributed to the study design, reviewed and accepted the final manuscript.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

ESS has a scholarship from the UCLouvain, Belgium.