One of the motivations behind the revised definition of cerebral palsy (CP) was to emphasize that the day-to-day problems faced by children and adults with CP, and their carers, are not motor ones alone.1 This has been rather forcibly supported by a systematic review of mainly population-based studies which concluded as follows: ‘There is high-quality grade evidence that among children with cerebral palsy: 1 in 3 cannot walk; 1 in 4 cannot talk; 1 in 4 had epilepsy; and 1 in 25 were deaf. There is moderate-quality evidence that 3 in 4 were in pain; 1 in 2 had an ID (intellectual disability); 1 in 3 had a hip displacement; 1 in 4 had a behavior disorder; 1 in 4 had bladder control problems; 1 in 5 dribbled; 1 in 10 were blind; 1 in 15 were tube-fed. There is low-quality evidence that 1 in 5 had a sleep disorder. Children and adults unable to walk are more likely to experience these accompanying impairments. The risk for pain and behavioral problems occurs equally at all levels of physical disability. There is insufficient evidence to be certain about the rates of sleep disorders, and more research is warranted’.2 The review's aim was to develop succinct and accurate information for families at the time of diagnosis, but these conclusions should also influence clinical practice. Historically, management emphasized motor function and the consequent musculo-skeletal complications. Over time attention has also turned to fine motor function, communication, feeding, and drooling. However, the other comorbidities, pain especially, have only recently started to develop a substantive literature and are not necessarily a major issue discussed at consultations with health professionals. The data from this review, together with other non-population based data3 reminds us how much they should be. As pain is the most frequent problem it is surprising how little attention it receives. There are various possible explanations, including that clinicians might not specifically ask about pain. In a clinical context the first difficulty is how to recognize and assess pain. While the prevalence increases with age, it is not correlated to type, distribution, or severity of motor impairment. Behaviour difficulties, sleep problems, and poor participation can be important symptoms. There are various validated instruments, all with drawbacks including inter-cultural variation.4-6 In children with communication difficulties related to development or disability, proxy measurement is necessary despite well-recognized concerns about reliability.2, 4 Acute pain, for example post operatively, probably needs a different tool than other types.5 For research studies a combination of instruments is advised,4, 6 though at present there is no recommended screening test for use in the clinic.4 Once pain has been identified, what can be done about it? There is no standardized, systematic evidence-based approach to help identify the cause. Given the wide variety of possibilities and origins (including muscular, skeletal, gastro-intestinal, dental, and psychological), a holistic perspective is required. Once a cause has been found, or even when it has not, there are usually several treatment possibilities. It has been recognized for a long time that effective management often requires a multidisciplinary team, as reflected in pain clinics, but the latter are not widely available and do not seem to be widely accessed by people with CP. Adult studies also suggest that effective treatments are not offered as much as they could be.7 The review by Novac et al. shows that pain is the most frequent comorbidity in children and adults with CP. While the authors also point out that behaviour, sleep, and drooling are under-researched (and the first two at least are interlinked with pain), this data shows that pain should be a priority and implies that as clinicians we are failing in our duty of care. To promote an equitable and reasonable quality of life for people with CP we need to validate simple clinical tools to recognize and assess pain, and we need to agree standardized approaches to diagnosis and treatment. Similar approaches could then follow for the other under-researched comorbidities.
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Dec 1, 2023
Steve R Fisher + 4
Open Access