An Analysis of Pain and Fatigue in Adults With Cerebral Palsy

One of the early highlights of my career was an invitation to participate in a consensus conference sponsored by the International Society for Prosthetics and Orthotics titled "Recent Developments in Healthcare for Cerebral Palsy: Implications and Opportunities for Orthotics." A small international multidisciplinary group, including orthotists, occupational and physical therapists, research scientists, bioengineers, orthopedists, and physiatrists from the United States, Canada, Australia, England, Scotland, and the Netherlands gathered for a few days on the campus of Oxford University, England, to share and discuss the findings of numerous systematic literature reviews that they had prepared specifically for the event. Among the themes that emerged from those three days was the realization that, while cerebral palsy (CP) does not inherently reduce one's life expectancy, when we think of CP, even in the medical and research communities, we often think of pediatric presentations. Peter Rosenbaum, BSc, MD, FRCPC, a professor of pediatrics at McMaster University, Ontario, Canada, and cofounder of the CanChild Centre for Childhood Disability Research articulated this position as follows: "One concern about CP that has been discussed for years but seems finally to be gaining serious traction is the notion of transition to adulthood, and the recognition that there are increasing numbers of adults with this childhood disorder. Like so many neurodevelopmental conditions, CP presents very early in life, and has traditionally been managed within the child health orbit. Parents report that when their children reach 18 years they and their youth ‘fall off the cliff'—a metaphor that has been heard in many countries. We are at last starting to acknowledge and address the reality that CP does not disappear when children outgrow children's services. People have begun to explore what happens to the lives of adults with CP. (One should add as well that mortality in CP is relatively low in all but those people most complexly affected, and even in this group mortality is decreasing. This means that premature death in childhood and adolescence is not the anticipated end for most children with CP born in the past two decades.) "…There are enormous opportunities … to undertake research and careful delineation of the life circumstances and life quality of adults with CP who may too easily be ignored by the world of adult services to whom the life experiences of people with CP are alien.... The reason for raising these issues in this essay is simply to argue that those of us who work in the child and youth field need to take a much longer view of CP than has been our tradition with our focus on childhood." 1 This article examines those health concerns that appear to be most compromising to adults with CP, including pain and fatigue, and presents areas in which pedorthists and orthotists may enhance the lives of adults living with what has long been oversimplified as a pediatric presentation through creative interventions. Long-term Declines in Health and Function The conversation begins with a recent Dutch study designed to describe longitudinal changes in perceived health and functional levels in adults with CP. 2 A cohort of approximately 50 adults with CP who were 35 to 45 years old were asked to complete postal questionnaires about ten years after a baseline survey administration. Perceived health was assessed via three questions: "Do you usually feel healthy?" "Do you worry about your health?" "Do problems with your health limit your activities?" In addition, the participants addressed issues related to pain, medication, bowel and bladder function, fatigue, vision, hearing, and speech. During the intervening ten years of adulthood among the participants with CP, there were substantial increases in the number of individuals who worried about their health (from just over a quarter to just over half) and those who felt that their activities were limited by health problems (from under 20 percent to approximately 45 percent). 2 In attempting to explain this increase, the authors note a 16 percent increase in the number of adults reporting pain, reaching 71 percent of the surveyed population. Coupled with the increase in pain prevalence was a decrease in reported mobility, with modest declines in the number of adults who walked indoors and short distances outdoors. 2 A second predominant association in declined perceived health was fatigue, with severe fatigue reported by 32 percent of the population. All the adults with severe fatigue also reported pain, and roughly half of those adults reporting pain also reported severe fatigue. 2 The authors of the study summarize the findings as "…adults with CP became increasing[ly] more worried about their health and perceived more effect of their health problems on activities of daily living. Pain and severe fatigue were the most common health issues and were associated with perceived poor health. Thus, at adult age, persons with CP are facing new or increasing health problems…in the general population, neither of these changes seem to occur before middle age. This suggests that people with CP may experience accelerated aging." Early Signs of Trouble Once the prevalence of pain in adults with CP is recognized, a reasonable next step is to determine if signs of such symptoms begin earlier in life and identify where they experience pain. However, a meaningful discussion regarding pain in this population requires an understanding of the range of symptom severity experienced by the heterogeneous group of individuals included under the broad diagnosis of CP. This is most frequently done using the Gross Motor Function Classification Scale (GMFCS) ranging from the least compromised (level I) to the most compromised (level V) presentations (See Table). Within GMFCS classes, patterns of childhood and adolescent pain presentations begin to develop. A recently published Swedish study reported on the pain experience of 2,777 children between the ages of one and 14 years old. 3 Within this cohort, pain became more common with increasing age. Prior to four years of age, pain was reported by less than 20 percent of queried individuals or their parents. This increased to about 33 percent between the ages of four and ten, exceeded 40 percent at age 11, and reached 50 percent by age 14. 3 In addition to pain prevalence, the predominant locations of pain were also reported. Among the least severely affected individuals (and therefore the most mobile and active), foot pain was the most frequently experienced. 3 Notably, 80 percent of participants in the Dutch study described earlier were also classified within the less affected (and more mobile) GMFCS levels I-III. By contrast, at increasing GMFCS levels, the prevalence of foot pain declined, replaced by pain in the hips and abdomen. 3 These trends persist in a second study of 667 adolescents with CP, ages 13-17, originating from six European countries. 4 Two-thirds of the queried individuals were from the less compromised, more mobile GMFCS levels I and II. As might be predicted, pain prevalence rates increased, reported at 74 percent in this slightly older contingent. Unfortunately, the study does not distinguish between pain experienced at the feet, ankles, or knees, reporting instead upon the more general experience of leg pain. However, leg pain was predominant, experienced by 40 percent of the study participants and with greater regularity than headaches or pain in the stomach, back, arms, or hips. 4 The Adult Experience The tendency toward foot and ankle pain among the more mobile individuals with CP persists in adulthood. An older Norwegian study reported on the pain experiences of 406 adults with CP, ages 18-72 with a mean age of 34 years. 5 Chronic pain, reported by only 15 percent of the general population, was reported by one-third of the adults with CP. Foot and ankle pain was reported by nearly half of the queried population, and over half of those individuals with diplegic cerebral palsy, second only in prevalence to back pain. Similar data was reported in a later Norwegian study of adults with CP. Here, a national survey of the target population was administered at baseline and repeated seven years later. 6 One hundred forty-nine individuals responded, the majority of whom were in the more ambulatory categories of GMFCS levels I (n = 68) and II (n = 36). Of those adults with bilateral CP, foot and ankle pain was identified by 47 percent at baseline and increased to 51 percent seven years later. As with the previous effort, the prevalence of foot and ankle pain was second only to back pain (reported by 60 percent of those with bilateral CP). 6 Conclusion Chronic pain appears to be a common experience among adults with CP. Among the most mobile individuals (GMFCS levels I and II) this pain is often experienced in the feet and ankles. Foot and ankle pain in ambulatory individuals with CP appears to begin in childhood, with the prevalence of such pain increasing with age. By adulthood, the prevalence of foot and ankle pain reaches approximately one-half of ambulatory adults with bilateral CP. Far from benign, this chronic pain has been associated with an increased perception that the health problems associated with CP are limiting activity. Yet despite its prevalence, the management of foot and ankle pain among adults with CP has received little if any treatment in clinical trials or publication. This deficit is consistent with Rosenbaum's assertion that "there are enormous opportunities … to undertake research and careful delineation of the life circumstances and life quality of adults." Those with knowledge of foot pain and its conservative management may find in adults with CP a population that could benefit from thoughtful consideration and intervention. Returning to Rosenbaum's counsel, perhaps foot and ankle pain in CP represents one area where we as, as a profession, should "take a much longer view of CP than has been our tradition with our focus on childhood." Phil Stevens, MEd, CPO, FAAOP, is in clinical practice with Hanger Clinic, Salt Lake City. He can be contacted at philmstevens@hotmail.com . References

1. Rosenbaum, P. 2009. Cerebral Palsy in the 21st Century: What's New?, in Recent Developments in Healthcare for Cerebral Palsy: Implications and Opportunities for Orthotics Morris C and Condie D, eds . (Copenhagen, Denmark: ISPO) 25-39.

2. Benner, J. L. et al. 2017. Long-term deterioration of perceived health and functioning in adults with cerebral palsy . Archives of Physical Medicine Rehabilitation (in press).

3. Alriksson-Schmidt, A., G. Hagglund. 2016. Pain in children and adolescents with cerebral palsy: a population-based registry study. Acta Paediatrica 105:665-70.

4. Parkinson, K. N., H. O. Dickinson, C. Arnaud, A. Lyons. 2013. Pain in young people aged 13 to 17 years with cerebral palsy: cross-sectional, multicentre European study. Childhood 98(6):434-40.

5. Jahnsen, R., L. Villien, G. Aarnodt, J. K. Stanghelle, and I Holm. 2004. Musculoskeletal pain in adults with cerebral palsy compared with the general population. Journal of Rehabilitation Medicine 36:78-84.

6. Opheim, A., R. Jahnsen, E. Olsson, and J. K. Stanghelle. 2011. Physical and mental components of health-related quality of life and musculoskeletal pain sites over seven years in adults with spastic cerebral palsy. Journal of Rehabilitation Medicine 43:382-87

An Analysis of Pain and Fatigue in Adults With Cerebral Palsy

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An Analysis of Pain and Fatigue in Adults With Cerebral Palsy

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