This preliminary study described HRQOL in terms of wellbeing and health status and explored the relationship between falls and mobility decline with these self-report measures in a sample of ambulant Australian adults with CP. The proportion of individuals reporting mobility decline (>80%) and one or more falls in the previous year (>95%) was markedly higher in this sample compared to that reported in the literature, with 25-40% of adults with CP typically describing mobility decline ,, and 40-70% of ambulant adults with CP reporting falls ,,. It is likely that participants self-selected to take part in this study according to existing concerns regarding mobility and falls, resulting in the increased proportion observed.
Wellbeing as measured by the PWI-SI and most individual PWI domains were below that of the general Australian population , with least satisfaction with personal health. Similarly, Australian ambulant adults with CP appear to have poorer health status in the areas of physical function, vitality, social function, bodily pain and general health compared to the Australian general population, as measured with the SF-36. Van der Slot and colleagues similarly demonstrated lower health status in a Dutch cohort of ambulant adults with CP compared to Dutch normative data . This and our findings accords with previous findings that adults with CP experience life as less manageable and meaningful, and above all ‘more unpredictable and incomprehensible’ than the general population , impacting on well being and health status. More detailed direct comparisons of wellbeing and health status with other cohorts of adults with CP is limited due to different measurement instruments, variation in intellectual and mobility capacity of participants, and cultural influences ,,. However, accumulating research to date suggests that older age , limited physical activity , fatigue , pain ,, and visual loss , may be negatively associated with the physical and/or mental aspects of HRQOL in adults with CP.
In contrast, adults with CP in this study rated their wellbeing (as measured by PWI-SI) higher than those with adult onset spinal cord injury . Absence of illness or disability is not a pre requisite for health; therefore individuals living with a developmental disability can consider themselves generally ‘healthy’ . It is possible that those ageing with CP having lived with disability all their lives have slightly different viewpoints on ‘health’ and life expectations to those with a more recently acquired disability, such as spinal cord injury. The variation in wellbeing for those with developmental versus acquired disability warrants further exploration.
Mobility decline may be associated with poorer satisfaction with personal health (PWI) and lower ratings of general health (SF-36). A greater understanding of factors associated with mobility decline, such as age of walking debut, use of gait aids during childhood (GMFCS Level III), and the presence of bilateral movement dysfunction has arisen over the past 10 or so years . Not surprisingly, the findings of this preliminary study supports previous research revealing that mobility decline also impacts aspects of HRQOL, potentially through mechanisms such as functional loss, pain, fatigue, and reduction in participation opportunities ,. It may be beneficial for adult disability services to provide health promotion strategies including education around ageing to assist ambulant adults with CP navigate adulthood where pre-existing mobility skills, may be lost or reduced, with the potential for lowered HRQOL.
In this small sample, people who did not fall or fell infrequently reported lower ‘role limitation–emotional’ (SF-36) than those who fell often. This dimension explored the impact of emotional problems (such as depression or anxiety) on an individual’s ability to complete work or other duties, accomplish tasks and be careful in work and other tasks. A low score in this domain suggests that a person’s daily activity is limited by emotional problems (fear, anxiety, depression). It may be that those who do not fall or fall only infrequently have considerable fear or anxiety regarding their mobility, with the need to implement constant vigilance to remain falls-free, subsequently restricting social and participation opportunities. Restriction of activity in those at high risk of falls has been documented in other populations ,. It is possible that those who experience falls, also experience relatively greater social and participation opportunities, albeit whilst putting themselves at risk. Whilst this finding needs to be interpreted with caution, the relationship between falling behaviour and emotional health in adults ageing with CP warrants further research.
Falls history was found to be a significant contributor to the model developed for physical health status (SF-36 PCS), accounting for 29% of the variance, and 18% of the variance in wellbeing (PWI-SI scores) in this small sample of ambulant adults with CP. Unlike other factors considered in this study such as GMFCS level which is unlikely to improve over adulthood , or age which cannot be altered, there may be the potential to enhance HRQOL by addressing falls behaviours in ambulant adults with CP. Further prospective studies are therefore required in order to examine the relationship between ambulant adults with CP who do or do not fall and their HRQOL.
One of the main limitations of this study was the small sample of participants who reported that their mobility did not decline and who did not have a history of falls. In addition, this study is likely to have particularly appealed to participants already concerned about mobility decline and falls. The falls rate and profile may therefore have been overestimated compared to that of the wider population of ambulant adults with CP, and caution is warranted when interpreting the results. In order to validate the findings of this study, further studies with significantly larger sample sizes are required. Furthermore, the findings can only be applied to adults with sufficient cognition to complete detailed surveys. However, given that cognitive impairment is more typically experienced by those at GMFCS Levels IV– V , reasonable inferences can be made regarding the findings to the subset of ambulant adults with CP. Despite these limitations, useful preliminary data has been gathered describing experiences of ambulant adults with CP regarding well being and health status, and the impact of mobility decline and falls on aspects of HRQOL.