Longitudinal assessment of the upper limb in adults with cerebral palsy

Optimal care of individuals with cerebral palsy (CP) in adulthood, not just throughout childhood, is now recognized as critical for quality health care across the lifespan. Features of premature or accelerated ageing such as osteoporosis and arthritis, sarcopenia, chronic pain, and fatigue are frequently evident in adults with CP, as well as an increased risk of the development of comorbidities such as diabetes, hypertension, and asthma.1 These factors may adversely impact function, social connection and participation, and quality of life, as well as lead to decreased independence. There is now considerable evidence to suggest that 25% or more of ambulant adults with CP experience gait decline. Higher risk of gait decline occurs in those who are older, less independent in gait, have bilateral motor impairment, and higher levels of pain or fatigue.2 These data are supplemented with qualitative reports from individuals with CP who have described the impact of such decline on their mobility function, facilitating the development of targeted interventions to address decline. However, much less is known about decline of other functional areas such as change in the upper limb or swallowing throughout adulthood. Using data from the well-established Swedish CP registry, Cloodt et al.'s study3 retrospectively analysed repeated measures of upper limb passive range of motion (ROM) in almost 1400 adults with CP. Key findings suggested that upper limb ROM declines throughout adulthood across all Manual Ability Classification System (MACS) levels,4 with higher (more severe) MACS levels associated with greater ROM decline. Although this study provides important preliminary information about the potential trajectory of the shoulder, elbow, and wrist passive ROM decline in adults with CP associated with ageing, knowledge of change in these impairments alone limits the ability to anticipate any subsequent impact on an individual's activity and participation. It is recognized that in individuals without disability, a reduction in upper limb ROM may occur gradually with ageing, with relatively limited initial impact on function and participation. It is not known whether the loss of ROM at an individual upper limb joint, or combination of upper limb joints (unilateral or bilateral) is directly associated with functional decline in CP, or if there is a 'ROM threshold' at which time the impact on function and participation becomes significant. These issues warrant further investigation. Further, although evidence is provided by Cloodt et al. to propose the trajectory of decline in specific upper limb ranges such as shoulder flexion and wrist extension, the cause(s) of or contributors to any decline—such as pain, spasticity, contracture, arthritic changes—are unknown, limiting the ability to provide evidence-based intervention to address the ROM loss. It is known that up to 80% of adults with CP experience daily pain and a similar number (70%) experience spasticity, frequently in the upper limb.5 Future research may focus on investigating specific relationships between such factors and upper limb ROM decline to facilitate effective treatment. Nevertheless, this study highlights valuable information about upper limb change associated with ageing. It also reinforces the importance of inclusion of monitoring upper limb ROM in adults with CP, alongside other systems such as mobility, swallowing, and communication, as part of a comprehensive and regular program of review to enable individuals with CP to age well. Supplementing objective measures of impairment with functional outcomes, evaluation of participation, and the lived experience perspective will facilitate the development of evidence-based lifespan programs aligned with quality health outcomes in adults with CP. Open access publishing facilitated by Monash University, as part of the Wiley - Monash University agreement via the Council of Australian University Librarians. None. The author declares no conflicts of interest. Not required.