Health‐related quality of life, pain, and fatigue in young adults with cerebral palsy

Abstract

Aim To describe health‐related quality of life (HRQoL), pain, fatigue, and other health variables in young adults with cerebral palsy (CP), and to explore associations with the Gross Motor Function Classification System – Expanded and Revised (GMFCS‐ER) and physical activity. Method This was a cross‐sectional study of 61 young adults at a mean age of 21 years 2 months (standard deviation 8mo, range 20–22y) with CP, from a geographically defined area. Data collection included: Short Form 36 version 2 for HRQoL, Brief Pain Inventory – Short Form, Fatigue Severity Scale, level of physical activity, medical history, and physical examination. Results Overall HRQoL equalled that of population norms; however self‐reported physical health was lower in GMFCS‐ER levels III to V compared to GMFCS‐ER levels I to II. Self‐reported mental health was, inversely, lower in GMFCS‐ER levels I to II compared to GMFCS‐ER levels III to V. Pain prevalence was 49%, and pain was present across all GMFCS‐ER levels. Fatigue, as well as sleep problems, had 41% prevalence, with fatigue severity decreasing with increasing level of physical activity. Interpretation General HRQoL in young adults with CP was comparable to population norms. Pain and fatigue are important to address in high motor‐functioning individuals also. Physical activity could be a possible protective factor against fatigue. What this paper adds Health‐related quality of life in young adults with cerebral palsy (CP) was comparable to population norms. Pain, fatigue, and sleep problems occurred at all Gross Motor Function Classification System levels. There is a possible protective effect of physical activity on fatigue.

Prevalence of pain and interference with daily activities and sleep in adults with cerebral palsy

“…In fact, two out of three adults in this study reported pain, and of those, one in four reported severe pain. The prevalence of pain in this study is similar to previous findings of pain in adults with CP in Sweden, 28 but higher than recently reported rates for younger adults in their early twenties in Sweden (49%) 3 . This supports the notion that the frequency of pain increases rapidly during early adulthood and younger middle age in this population.…”

“…The prevalence of pain in this study is similar to previous findings of pain in adults with CP in Sweden, 28 but higher than recently reported rates for younger adults in their early twenties in Sweden (49%). 3 This supports the notion that the frequency of pain increases rapidly during early adulthood and younger middle age in this population. The prevalence of pain (66.5%) was slightly lower than what has been reported internationally (70-82%), 1,2,9 but this may be partially explained by different inclusion and exclusion criteria, definitions of pain, and recall periods.…”

“…30,31 Back pain was most frequently reported in the current study, which is in agreement with some previous findings. 3,9,11 However, this stands in contrast to a recent systematic review, 2 where legs were identified as the most commonly reported pain site in adults with CP. We found a higher prevalence of pain associated with the hips/thighs than what has been reported in Norway, where higher rates of pain were reported in the neck and feet.…”

“…1 Different types of pain at various body sites are frequent in this population, with a predominance of musculoskeletal pain. 2,3 Pain has a negative influence on several factors, such as reduced mobility, lower levels of self-care, reduced overall function, and lower health-related quality of life. 4,5 Most of the body of work related to pain and CP to date has been performed in relation to children.…”

“…7 Pain sites tend to correlate with the level of gross motor function; in general, pain is most commonly reported in the lower extremities in children and adolescents with CP. 7,8 In terms of the pain experienced by adults with CP, females still seem to be disproportionally affected, 3,9 although there are exceptions. 1 However, whether pain sites and the distribution of pain by level of gross motor function differ in adulthood is not clear.…”