Adults with spastic diplegic cerebral palsy living in a low-to-middle income country: A six-year follow-up study on pain, functional mobility, activity and participation.

BACKGROUND

Insight into the day-to-day challenges faced by adults living with Cerebral Palsy (CP) in low-to-middle income countries (LMICs) will enable support towards healthy aging in this population.

OBJECTIVES

To determine changes in level of pain, functional mobility and accomplishment as well as satisfaction in daily life of ambulant adults with CP living in a LMIC over a six-year period, compared to typically developed (TD) adults. In addition, to determine associations with individual characteristics.

METHODS

Twenty-eight adults with CP and spastic diplegia (median [interquartile ranges] age = 39.0 [34.0-45.7] years; Gross Motor Function Classification System level I/II/III: n = 11/12/5) participated in this study, together with 28 matched TD adults. Levels of accomplishment and satisfaction were assessed with the Life-Habits questionnaire, functional mobility was determined with the Functional Mobility Scale and (back, lower and upper limb) pain frequency was gauged with a standardized questionnaire.

RESULTS

Life-Habits accomplishment and satisfaction scores of adults with CP remained unchanged during the six-year follow-up, with 79% being independent and 100% satisfied. Functional mobility decreased and related to the total accomplishment score. No change in pain frequency was observed, but adults with CP experienced more pain than their peers. Back pain was significantly associated with the total satisfaction score.

CONCLUSIONS

Relative high levels of accomplishment and satisfaction and no change in pain frequency were noted during a six-year follow-up study of adults with CP living in a LMIC. The importance of exercise/rehabilitation programs to reduce pain and maintain functional mobility in persons aging with CP was highlighted.