Fatigue in adults with cerebral palsy: A three-year follow-up study

Abstract

People with cerebral palsy are often tired and may complain about fatigue. In this study we describe the development of fatigue over a mean period of 3 years. We found that fatigue is more or less stable over time on a group level. On an individual level there can be important changes, both increases and decreases in fatigue-related symptoms. We did not find any known risk factors for fatigue (for example body mass index, age) to be predictive of change in fatigue over time. We learned that adults with CP, who experience fatigue, are likely to remain fatigued in the future. We therefore think it is important for care providers to monitor and talk about fatigue with adults with CP. We would suggest care providers begin this discussion at a much younger age to influence fatigue later in life. Objectives: To describe the course of fatigue over a 3-year follow-up period in adults with cerebral palsy and to investigate the association of known determinants of fatigue (i.e. demographic characteristics and/or body composition) with change in fatigue. Methods: Forty-one adults with cerebral palsy from a previous study of fatigue were invited to participate in a follow-up study. Twenty-three adults with cerebral palsy (Gross Motor Function Classification System (GMFCS) levels I-V; mean age 38 years 2 months, standard deviation (SD) 14 years 1 month)) agreed to participate (convenience sample). Fatigue was measured with the Fatigue Impact and Severity Self-Assessment (FISSA, range 31-157) questionnaire. The course of fatigue is described at group, subgroup (GMFCS) and individual levels. Results: The mean FISSA score for all participants was 84.0 (SD 27.7) at baseline and 91.7 (SD 26.7) at follow-up. Despite variations among individuals in the change of fatigue, there was no statistically significant difference in FISSA score over time (p = 0.087, 95% confidence interval (95% CI)-16.7 to 1.22). No known determinants of fatigue predictive of change in FISSA scores were found. Discussion: Fatigue appears to be relatively stable within adults with cerebral palsy over time, with a variable presentation between individuals and across GMFCS levels. Care providers should monitor and discuss fatigue in young individuals with cerebral palsy in order to attenuate fatigue later in life.

The Effects of Trunk Impairment on Fatigue and Balance in Children with Cerebral Palsy

“…As children with CP constantly feel tired, they may perceive a feeling of tiredness as normal and not report it (Schwartz, 2010). One reviewer stated that children with CP who experience fatigue are likely to experience fatigue that does not diminish over time (Lansink et al, 2018). In the present study we obtained further evidence for fatigue management, supporting those prior studies that reported that the fatigue process is probably a complex interaction with decreased motor performance.…”

Real‐time daily fatigue, sleep, physical activity, and health‐related fitness in adults with cerebral palsy

“…Ambulatory adults with CP with complaints of fatigue during daily activities such as walking or cycling, complaints of reduced walking distance or speed, and those with limited ability to perform intensive physical activities were eligible for this cross-sectional multicentre study. Other criteria for participation included: (1) diagnosed with spastic CP according to the Surveillance of Cerebral Palsy in Europe; 15 (2) 16 to 60 years of age; (3) classified in Gross Motor Function Classification System (GMFCS) -Expanded and Revised levels I to III (able to walk with or without assistive devices); 16 (4) no contra-indication for maximal exercise; (5) no severe communication or understanding problems that impede proper measurement performance; and (6) no history of botulinum neurotoxin A injections and/ or serial casting in the past 3 months or surgery in the past 6 months. The study was approved by the Medical Ethical Committee of the University Medical Centre Utrecht, Utrecht (the Netherlands) and the Erasmus MC, University Medical Center, Rotterdam (the Netherlands), and participants signed informed consent before participation.…”

“…It has been estimated that up to 40% of adolescents and adults with CP experience fatigue 1–4 . Together with pain and joint deformities, fatigue is one of the most important impairments in people with CP and seems to emerge in adulthood and worsen over time 5 . Furthermore, fatigue is known to impact quality of life and daily activities 1–4 …”

Evidence of Construct Validity for the Modified Mental Fatigue Scale When Used in Persons with Cerebral Palsy

“…7 Fatigue is commonly assessed using rating scales and there are many self-reporting scales for different aspects of fatigue and for different diseases. [26][27][28][29] However, to the best of our knowledge, there is only one scale designed for use by individuals with CP: the Fatigue Impact and Severity Self-Assessment (FISSA) 26,30 , and its focus is on 'physical tiredness, muscle soreness, exhaustion of your muscles and body, or any related feelings' (p. 6) 26 , not explicitly on mental fatigue. Researchers have stated that there is a need for greater knowledge about how fatigue is manifested in individuals with CP 7,11,26,31 , and studies have underlined the need to detect mental fatigue 7,32 and to find appropriate interventions to ensure a balance between activity and rest 33 in individuals with CP.…”