Young CP Adults Report Overall Good Quality of Life, But Problems with Pain, Fatigue and Sleep Persist

Health-related quality of life in young adults with cerebral palsy (CP) is comparable to people in the general population, a study has found. However, problems with pain, fatigue, and sleep were found across all physical functioning CP categories. 

Significantly, however, higher levels of physical activity were associated with reduced fatigue, suggesting a protective effect. 

The study, “Health-related quality of life, pain, and fatigue in young adults with cerebral palsy,” was published in the journal Developmental Medicine & Child Neurology.

Cerebral palsy is a form of motor disability that can lead to varying degrees of physical disabilities. In addition to the physical challenges individuals face as they grow, many with CP report a lower health-related quality of life (HRQoL) related to fatigue, pain, and diminished physical and mental health. 

Children and adolescents with CP report a worsening HRQoL as they age, while adults report a lower HRQoL compared to people without CP. 

Studies on health, and possible risk factors and protective factors, have been predominantly conducted with people over a wide range of ages. However, information on fatigue, pain, and HRQoL specifically related to CP patients as young adults — a time when they are about to embark on an independent life — is lacking. 

This information may help guide treatment in young adults living with CP aimed at reducing or preventing future health challenges later in life. 

To bridge this knowledge gap, a team of researchers at the Karolinska Institute, Stockholm, Sweden, chose to investigate fatigue, pain, and overall HRQoL in young adults with CP exclusively. 

A total of 61 young adults with CP, ages 20 to 22, were recruited in Stockholm; they were interviewed, filled out questionnaires, and were examined physically.

Patients’ physical functioning was categorized by the Gross Motor Function Classification System – Expanded and Revised (GMFCS-ER).

GMFCS-ER levels I and II represent higher physically functioning CP patients, while levels III to V are assigned to those with low physical function. 

HRQoL was assessed using the Short Form 36 version 2 (SF-36v2), from which a physical component score (PCS) and mental component score (MCS) were calculated. 

The overall HRQoL for the whole group matched the scores found in the general population. However, as expected, the PCS, related to physical abilities, was significantly lower in all GMFCS-ER categories compared to those without CP. 

In contrast, those in GMFCS-ER levels I to II scored lower in MCS (related to mental health) whereas those from levels III to V scored better. While this difference was not statistically significant compared to the general population, there was a significant difference in mental health scores between those in levels I and II, compared to those in levels III to V.  

Overall, PCS scores worsened, and MCS scores improved, with increasing GMFCS-ER levels of physical disability.

To explain the relationship between lower reported mental health in people with higher physical abilities, the authors suggested, “individuals with ‘mild’ impairments tend to compare themselves with people without disabilities, consequently reporting low levels of self-perceived health.”

The pain portion of the SF-36v2 questionnaire found that almost half (49%) of participants experienced mild pain in the four weeks before the study. Pain was reported equally across all GMFCS-ER levels.

A more detailed assessment of pain, using the Brief Pain Inventory – Short Form, which evaluated the severity of pain and its impact on functioning, found that the most pain reported most frequently was in the lower back. 

The Fatigue Severity Scale (FSS) was used to gauge the presence and severity of fatigue in addition to questions related to the quality and quantity of sleep. 

Across all GMFCS-ER levels, problems of fatigue and sleep were evenly distributed as reported by 41% of the participants, with the exception of level V where more patients had difficulties with fatigue and sleep. 

A survey of physical activity using the Saltin-Grimby Physical Activity Level Scale found 28% of the subjects reported being physically inactive, 39% said engaged in regular mild-moderate physical activity, and 33% engaged in regular strenuous physical exercise. 

The analysis found a statistically significant trend showing that higher levels of physical activity were associated with less fatigue. 

“This study found that general HRQoL in young adults with CP was comparable to that of  population norms, but while physical health was better in individuals in GMFCS levels I to II, mental health was reported as poorer,” the authors concluded.

“Pain and fatigue are important to address in high motor-functioning individuals also. Finally, physical activity could be a possible protective factor against fatigue,” they added.