Symptom burden in individuals with cerebral palsy

• Published in: Journal of rehabilitation research and development 2010-01, Vol.47 (9), p.863-876
• Main Authors: Hirsh, Adam T, Gallegos, Juan C, Gertz, Kevin J, Engel, Joyce M, Jensen, Mark P
• Format: Article
• Language: English
• Subjects: Activities of Daily Living; Adolescent; Adult; Aged; Care and treatment; Cerebral palsy; Cerebral Palsy - complications; Cerebral Palsy - physiopathology; Cerebral Palsy - psychology; Data collection; Diagnosis; Fatigue; Fatigue - etiology; Female; Health aspects; Humans; Hypesthesia - etiology; Interviews as Topic; Male; Memory; Memory Disorders - etiology; Middle Aged; Muscle Weakness - etiology; Pain - etiology; Pain - psychology; Patient outcomes; Quality of Life; Rehabilitation; Risk factors; Scoliosis; Severity of Illness Index; Social Environment; Social integration; Surveys and Questionnaires; Time Factors; Vision Disorders - etiology; Young Adult
• ISSN: 0748-7711; 1938-1352
• DOI: 10.1682/JRRD.2010.03.0024

The current study sought to (1) determine the relative frequency and severity of eight symptoms in adults with cerebral palsy (CP), (2) examine the perceived course of these eight symptoms over time, and (3) determine the associations between the severity of these symptoms and psychosocial functioning. Eighty-three adults with CP completed a measure assessing the frequency, severity, and perceived course of eight symptoms (pain, weakness, fatigue, imbalance, numbness, memory loss, vision loss, and shortness of breath). Respondents also completed measures of community integration and psychological functioning. The results indicated that pain, fatigue, imbalance, and weakness were the most common and severe symptoms reported. All symptoms were reported to have either stayed the same or worsened, rather than resolved, over time. The symptoms were more closely related to social integration than to home integration, productive activity, or psychological functioning. Memory loss was a unique predictor of social integration in the multivariate context. This study highlighted several common and problematic symptoms experienced by adults with CP. Additional research is needed to identify the most effective treatments for those symptoms that affect community integration and psychological functioning as a way to improve the quality of life of individuals with CP.