Increasing symptoms, met and unmet needs in adults with cerebral palsy or meningomyelocele a longitudinal follow-up

• Main Authors: Marie Törnbom, Ulrica Jonsson, Katharina Stibrant Sunnerhagen
• Format: Article
• Language: English
• Published: Stockholm University Press 2012-08-01
• Series: Scandinavian Journal of Disability Research
• Subjects: activities of daily living; access to health care; cerebral palsy; health and social care; patient satisfaction; physical disabilities
• Online Access: https://www.sjdr.se/articles/465

The aim of this study was to investigate how symptoms and personal assistance needs change over time among people with cerebral palsy (CP) or meningomyelocele (MMC), and to identify unmet needs. The study design was a longitudinal follow up, both cohorts starting as young adults while treated at the adult habilitation clinic. The participants were interviewed by telephone. Group (A) was studied in 1983 (n =55), in 1997 (n=42) and in 2009 (n=28). Group (B) was studied in 1998 (n=30) and in 2009 (n=25). Perceived symptoms were aggravated in both groups in 2009 compared with 1997 (8), and significantly more aggravated in group A (older than group B). The number of participants needing practical assistance increased significantly in both groups between 1997–1998 and 2009. Most people in both groups had contact with health care professionals and many wanted more assistance, especially access to a specialized team. As a consequence of aggravating symptoms, the need for specialized health care continues into adulthood.