What do we Know About Pain in Cerebral Palsy?

Irén is a four-year-old girl with dystonic quadriplegic cerebral palsy, GMFCS level V. She is non-verbal and generally a content little girl.  Over the last week she has been holding her muscles tensely, she has a distressed expression for most of the day, and has developed a behavior of constant grunting and gasping.  Her parents come to PT to seek your opinion.  Is she in pain?

Pretest:

Take a moment to scan of your caseload and note the kids you think may be in pain.

How do you know?

Do you have any measurement tools?

Children with CP frequently experience pain:

  • Pain in childhood disability is typically under-identified, measured, and treated by clinicians.
  •  Pain in childhood disability is complex.  It impacts everyday function and quality of life.  As pain increases, quality of life dramatically decreases.  Parental stress levels increase.
  • Pain partially accounts for the association between cerebral palsy and depression. (Whitney, 2018)
  • There remains a gap in knowledge between accurate pain assessments and effective treatments.

Continue reading “What do we Know About Pain in Cerebral Palsy?”

Case Study- Pain

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. Continue reading “Case Study- Pain”

Tests & Measures for Participation

Yasmin is a sixteen-year-old girl with athetoid cerebral palsy, GMFCS level IV.  She is passionate about her studies and has already gone to check out a few colleges.  She is thinking about living in a dorm.   As her PT, are there measures that will help you learn about her current level of participation?  You know about her activity capacity, but not as much about her current level of performance – and that is what will matter as she transitions to more independent living. After some thought, you decide to update the TRANSITION-Q for health management skills and the ACTIVLIM-CP for daily activities.  Additionally, you are going to update Yasmin’s COPM to prioritize her individual goals.

I’ve recently discovered the world of performance and participation measures.  They can begin to bridge the gap between physical therapy appointments and higher participation in daily life.  Some measures are free and translated into many languages.   Other measures assess global performance change after PT intensives, Botox, or surgery.  Many of these are new to me, aside from the CHAQ, PEM-CY, COPM, and GAS.  It is exciting to think of the potential and I look forward to trying them out in the months to come!  Continue reading “Tests & Measures for Participation”

Tests, Measures, & Classification Systems for Activity

Luca is a 7-year-old boy with Duchenne Muscular Dystrophy.  As his physical therapist, you are wondering about tests and measures that fit into the activity section of the ICF. Thinking of how to quantify his activity, you decide to use the North Star Ambulatory Assessment (NSAA) to measure transitions and mobility, the Timed Floor to Stand-Natural (TFTS-N) to time his rise from the floor, and the Six Minute Walk Test (6MWT) to measure distance walking.

Continue reading “Tests, Measures, & Classification Systems for Activity”

Tests & Measures of Body Structures and Body Functions

JoLee is a four-year-old girl with mixed spastic/dystonic cerebral palsy, GMFCS III.  Her physical therapy progress report is due and you would like to use objective tests and measures that are appropriate for her age.  After looking through this list, you decide on the ECAB for balance, the SATCo for trunk control, and the HAT for hypertonia/dystonia.   Of course you will also do traditional range of motion testing and an Adam’s forward bend test.  What’s unfamiliar on the list?  The MPST for anaerobic performance looks interesting, but it isn’t valid for JoLee’s age. 

Continue reading “Tests & Measures of Body Structures and Body Functions”

Using the Gross Motor Function Classification System- Expanded & Revised Version (GMFCS-E&R)

Michaela is a five-year-old girl who loves ballet.  She has a diagnosis of diplegic cerebral palsy,  GMFCS level III.  What does this mean?

GMFCS Level III (Between 4th & 6th Birthday)

Children walk using a hand-held mobility device in most indoor settings. They may climb stairs holding onto a railing with supervision or assistance. Children use wheeled mobility when traveling long distances and may self-propel for shorter distances.

From the GMFCS E&R instruction guide

 

GMFCS-E&R Quick facts:

  • Five-level classification system
  • Based on the child’s self-initiated, regular movement
  • For use with children with cerebral palsy only
  • Used to classify children with CP from 1-18 years
  • Not for use to classify infants under 1 year of age
  • Not for use as an outcome measure

The Gross Motor Function Classification System (GMFCS) levels I-V are gross motor function categories for children with cerebral palsy.    This post describes what GMFCS levels I through V mean, how they are used, and some of the controversy around them. Continue reading “Using the Gross Motor Function Classification System- Expanded & Revised Version (GMFCS-E&R)”

How to Use the Timed Floor to Stand-Natural Test (TFTS-N)

Dana loves going to school and spending time with her classmates. She is a first grader with hemiplegic cerebral palsy (GMFCS level 1).   Dana’s typical school day involves getting up and down from circle time, getting in and out of chairs at various stations, and moving to get supplies.  As a PT coming into the classroom for the first time, you are pleased with the number of activities she joins.  However, her teacher shares concern that Dana struggles to keep up with the movement pace of the classroom.   How can you compare Dana’s classroom mobility to that of her peers?  Is there a test with norms that you can use?

TFTS-N Quick Facts:

  • 5-14 years
  • Stand-alone test for children in school environments
  • Walking at a natural pace
  • Timing begins at “go,” not when movement is initiated
  • Tape 3m apart on floor
  • Face validity:  activity of transitioning to/from floor and walking short distance.

The Timed Floor to Stand-Natural (TFTS-N) test measures time as a child transitions from floor sitting to standing, walks 3m at a natural pace, turns around, walks back to the starting point and then returns to floor sitting.   The sitting position is tailor (criss-cross).   Continue reading “How to Use the Timed Floor to Stand-Natural Test (TFTS-N)”