What we Know About Pain in Children with Cerebral Palsy

Gianna is a 4-year old girl with bilateral cerebral palsy, GMFMCS level IV.  She has mixed tone with components of both spasticity and dystonia.  Over the last month she has been acting differently, with loud vocalizations, irritability, agitation, increased muscle tone, sleeplessness, and episodes of teeth grinding.  Everyone in her family has been feeling heightened stress.  Is Gianna in pain?  She can’t clearly relay what she is feeling and where it hurts because she is non-verbal.  There is no obvious swelling or redness on any area of her body.  As her PT, how can you tell if she is experiencing pain?

Gianna’s situation is common. The SPARCLE study in Europe identified that children with CP experience more pain than their peers and that pain can lead to a lower quality of life, decreased participation, and family stress.  Pain has been found to decrease quality of life more than the physical disability itself.  As a health practitioner, it can be difficult to determine the presence of pain unless there is a visible sign, localized pain, or the child can verbalize what they are feeling. In any case, physical therapists assess pain in all patients, including those who have chronic pain, global pain, and those who are not able to describe or communicate what they are feeling.   Rehab professionals are also responsible for keeping children within the boundaries of their comfort while working and certainly not contributing to their pain.  Over the last decade it has been widely discussed that pain is under reported in children, especially those who are non-communicating.   But what do we know about pain in cerebral palsy and what tools do we have to discover and measure it in the children we care for?

For Gianna, her family completed a two-hour observation and filled out the Non-communicating Children’s Pain Checklist- revised (NCCPC-R), an observational pain scale developed for use in children 3-18 who are unable to communicate because of cognitive impairments or disabilities.  Her score was 14.  A score of 7 or more indicates that a child has pain with 84% accuracy.  Further evaluation discovered that Gianna had experienced a sudden and rapid progression in her hip subluxation which was determined to be the cause of her intense pain.

Here is a review of recent research:

  1.  A study of a population of children born 1993-2008 with CP living in Skåne, Sweden in 2018 (data from CPUP, a follow-up surveillance program for people with CP in Sweden).  This study demonstrated that GMFCS/MACS level V was associated with the highest prevalence of pain (50%/54%) and level I with the lowest (30%/32%). The GMFCS/MACS Level II group had the second highest prevalence of pain.  Pain was most prevalent in dyskinetic CP (46%) and least frequent in unilateral CP (33%). Feet, knees and hips were the most dominant locations.  (Westbom, 2017)
  2. A study of 148 three to nineteen-year-old children with cerebral palsy with GMFCS level I-V were assessed at two time points (at least 6 months apart) in Toronto, Canada. The Health Utilities Index 3 (HUI3) was used as a measure of pain and its effect on daily activities. High gross motor level  (GMFCS level 1) patients were likely to have decreased pain at the second visit.  This was not true of the lower gross motor level (GMFCS level V) patients who overall did not have decreased pain levels at the second visit. This was thought to be due to more complex pain presentation and less easily treated pain etiologies. Children with high pain and high gross motor level were the most likely to have a positive outcome. Pain sources were:  hip subluxation/dislocation, contracture, spine deformity, foot deformity, abnormal gait, spasticity/dystonia, constipation, post surgical, acid reflux, choking.  (Christensen, 2016)
  3. A study of pain prevalence, frequency and intensity in non-verbal children 2-20 years old via parent report.  The children were outpatients in Kuala Lumpur and Klang Valley, Malaysia.  The majority (51%) of children studied were GMFCS V, 65% had spastic quadriplegia. The parents filled out the Comforts and Emotions (section 3) of the Caregiver Priorities of Life with Disabilities (CPCHILD) Questionnaire, as well as the Depression, Anxiety and Stress Scale (DASS-21) and Multidimensional Scale of Perceived Social Support (MSPSS). Physical therapy (stretching) was associated with the most intense and frequent pain. Toileting was also associated with pain.  Older children had more pain.  The study suggests re-examining the role of stretch in physical therapy, especially in light of recent studies which have not proven its effectiveness.  This study established pain as a major priority area in management of children with CP, especially spastic quadriplegia. (Jayanath, 2015)
  4. a systematic review examining prevalence and characteristics of pain in children and young adults with cerebral palsy reviewed 106 publications from 57 studies, concluding that pain was higher in females, older age groups, and those who are classified in GMFMCS V.  Pain was most common in lower extremities, back and abdomen, and is associated with lower quality of life or health status. (McKinnon, 2018)

Recognizing pain more clearly, I have restructured the way I deliver PT in recent years.  Here are the things I believe and am working on at this time:

  • “Motion is lotion”, however,  watch closely for behavioral signs of pain.  Using the Face Legs Arms Cry Consolability (FLACC) scale when working with kids between 2 months and 7 years of age, or the revised version (rFLACC) for kids older than 1 year,  therapists can begin to more accurately read the signs of pain stress during a session.
  • Use the GMAE-2 software from CanChild to classify GMFCS level in children with CP. It gives the percentile rank for each level.  I’ve recently learned that many of my formerly classified GMFCS IV’s are actually 90th percentile GMFCS Vs/ 20th percentile GMFCS IVs!
  • Follow the Australian Hip Surveillance Guidelines for Children with Cerebral Palsy to reduce the incidence of hip subluxation/dislocation based on the current GMFCS level.
  • Use the Hypertonia Assessment Tool to identify spasticity and dystonia.
  • Pay attention to abdominal discomfort (gas, constipation, adhesions from surgery).  Institute of Physical Art Proprioceptive Neuromuscular Facilitation (PNF 1), Functional mobilization (FM1) and Dynamic Core 4 Kids Online (DK4K) by Heart Space Physical Therapy for Children have been amazing for this, in my experience, especially (and unexpectedly) with GMFCS V children.
  • Having a few go-to behavioral pain measurement tools is helpful.  I like the Non-communicating Children’s Pain Checklist – Revised (NCCPC-R), the rFLACC, and appreciate the Chronic Pain Assessment Toolbox for Children with Disabilities when searching for a specific measure.
  • Quality of life in pediatrics is important!  The Study of Participation of Children Living in Europe (SPARCLE) executive summary is a good place for an overview.  In addition to the CPCHILD questionnaire mentioned above, and the Pediatric Quality of Life Inventory (PedsQL) are also frequently used.  Kids 8 and older who can verbalize should be the ones to answer the questions 🙂
  • Medbridge online CEUs :  Pain Management for Children– Susan Stralka, PT, DPT, MS.  This is a comprehensive overview of patterns of physical, affective, sociocultural, behavioral and cognitive changes present in pediatric pain.  The speaker also discusses areas of pain such as Ehlers-Danlos syndrome, sickle-cell disease, complex regional pain, as well as current treatment concepts.
How are you begining to recognize and treat pain differently in pediatrics?  Please take a moment to share!

Author: spritelypt

Pediatric physical therapist

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