Daily activities, participation, satisfaction, and functional mobility of adults with cerebral palsy more than 25 years after selective dorsal rhizotomy: a long-term follow-up during adulthood

Abstract

Purpose

To determine changes in level of accomplishment and satisfaction in daily activities and social participation, and functional mobility in adults with cerebral palsy (CP) more than 25 years after selective dorsal rhizotomy (SDR).

Materials and methods

This long-term observational nine-year follow-up study included 26 adults (median age 35 years) with CP and spastic diplegia, and 26 matched typically developing adults. Assessment tools used were the Life-Habits questionnaire and the Functional Mobility Scale.

Results

Most of the adults with CP were independent and satisfied with accomplishing life habits and no changes were determined, except for a small change in the Housing accomplishment level. Compared to typically developing adults, the CP cohort was more dependent in accomplishing Mobility and Recreation. However, the level of satisfaction was similar for most life habits except for Mobility. Functional mobility did not change, but correlated with Life-Habits results.

Conclusions

Adults with CP showed high and stable levels of accomplishment and satisfaction in daily activities and social participation more than 25 years after SDR. This is in contrast with the literature, where functional decline was shown for individuals with CP as they age. The relation with functional mobility highlights the importance to focus the rehabilitation on maintaining walking ability in order to enable high level of daily activities and social participation in adults with CP.

Implications for rehabilitation

• Selective dorsal rhizotomy (SDR) is a valuable treatment option for a selective group of children with cerebral palsy (CP) in order to reduce spasticity.

• The long-term outcomes of SDR on level of accomplishment and satisfaction in daily activities and social participation as well functional mobility in adults with CP are not clear.

• More than 25 years after SDR adults with CP experienced stable and lasting high levels of functioning regarding daily activities and social participation and were satisfied with the way they accomplished life habits.

• Functional mobility was correlated to level of accomplishment and satisfaction in daily activities and social participation, which highlights the importance to focus rehabilitation programs on maintaining functional mobility in order to enable daily activities and social participation in adults with CP.

Keywords:

• Cerebral palsy
• rhizotomy
• activities of daily living
• social participation
• mobility limitation
• ageing

Acknowledgements

We would like to thank all the subjects (adults with CP and typically developing adults) for their time and willingness to participate in the study. Without their assistance, this research would not have been possible. The authors wish to acknowledge the neurosurgeons who performed the SDR surgeries, and dedicate this contribution to the late Jonathan C. Peter who died in April 2018.

Disclosure statement

The authors report no declarations of interest.

Additional information

Funding

We would like to thank the National Research Foundation (NRF) of South Africa, for the funding which allowed us to conduct this study.