Rehabilitation for Children with Posterior Fossa Tumors

Range of rehabilitation team health professionals who may be required for a child with posterior fossa tumor

Pediatric rehabilitation specialist

Occupational therapist

Speech pathologist

Physiotherapist

Dietician

Clinical nurse specialist

Neuropsychologist

Clinical psychologist

Social worker

Rehabilitation education specialist

Working together with neurosurgeons, teachers, chaplains, oncologists, radiation-oncologists, palliative care team, and the child and family

Although the rehabilitation team may not become involved in the child’s care until after surgical removal of the tumor has occurred, anticipatory guidance is nonetheless vitally important to prepare families and the child for common complications such as weakness, dysphagia, ataxia, and possibly even mutism with associated dysarthria. Whenever possible, a meeting with one or more key members of the rehabilitation team prior to surgery can provide some reassurance to parents of the availability of services in the postoperative period and a familiar face for the child once they are managed on the hospital ward and ready to start a more formal rehabilitation program.

The International Classification of Functioning, Disability, and Health (ICF) has been proposed as the framework in which rehabilitation teams can assess and treat children [4, 5] (Fig. 65.1). The ICF system, developed by the World Health Organization, focuses on the various aspects of health which are viewed in a framework that goes beyond considering just the individual’s health impairment to body structure and function, to also consider the impact of that impairment on a child’s daily activities and participation. The ICF describes “body functions and structures” as physiological functions of body systems or anatomical elements such as organs, limbs, and their components. “Activity” is the execution of specific tasks or actions by the individual, while “participation” is involvement in life situations. Contextual factors are external environmental factors (e.g., social attitudes or the child’s physical environment) and internal personal factors, such as gender, age, coping style, or other factors, that influence how disability is experienced by the individual. The ICF is intended to be a universal classification system and can also be used to code components of health. Within rehabilitation, the ICF is a useful tool to help ensure all aspects of health care are assessed and when necessary treated. To date, most research for children with posterior fossa tumors has focused within the body structure and function domain with little known about outcome in activity and participation domains.

Fig. 65.1

The ICF model

65.2.1 Assessments

Assessments used by the rehabilitation team to help guide treatment and monitor progress will include those at the levels of body structure and function (e.g., videofluoroscopy for swallowing, joint range of motion, Modified Tardieu Scale [6] for spasticity, ASIA Scale [7] for spinal injury, psychometric assessment), activity (e.g., Six-Minute Walk Test [8], Timed Up and Go [9], 2D or 3D gait analysis, WeeFIM™ (Wee Functional Independence Measure) [10], COPM (Canadian Occupational Performance Measure) [11], psychometric assessment) and participation (e.g., COPM [11], CAPE [12]).

Two measures we have found useful and relatively simple to apply in clinical practice are the WeeFIM™ [10] and COPM [11]. The WeeFIM™ can be used in children aged 6 months to 7 years, and older if they function below the functional level expected for a 7-year-old. It is useful for tracking disability status and a child’s level of functional independence. The WeeFIM™ has 18 items covering the domains of self-care, mobility, and cognition. Each item is scored 1–7, with 1 being complete dependence through to 7 being complete independence. Comparison of an individual can be made with age-normed scores. The WeeFIM™ can be completed by any trained member of the team and in our setting is generally completed on admission to the inpatient rehabilitation program and again at the time of discharge. The COPM is a standardized outcome measure administered by semi-structured interview with the child or carers. The COPM measures changes in performance and satisfaction with tasks (or “occupations”) that are important to the child. Daily occupations, which are needed, wanted, and expected, are rated on a 10-point scale and those areas with the highest scores prioritized for rehabilitation intervention. The client then rates both their performance and satisfaction in each of the identified occupations on 10-point scales. Changes in scores between baseline assessment and reassessment can be calculated with change in score of two or more considered clinically significant (see Clinical Scenario below for an example of how these assessments may be used by the rehabilitation team).

Clinical Scenario

Sarah presented at 6 years of age with a 3-month history of progressive ataxia and dysarthria. She was an only child with both parents from professional backgrounds. The family lived within driving distance of a tertiary pediatric hospital, the site at which she received medical services. Sarah was in her second year of school and there was no family history of cancer or neurological disease. Sarah’s brain MRI scan showed a large heterogeneous lesion in the brainstem with an associated syrinx. She underwent a posterior fossa craniotomy. Tumor biopsy revealed pilocytic astrocytoma. She underwent chemotherapy, which was ceased prematurely due to poor tolerance. She subsequently progressed to radical resection of the remaining tumor.

Impairments following surgery included unilateral XIIth nerve palsy, asymmetric quadriparesis with spasticity in hip adductors and hamstrings, neurogenic bladder and bowel, and central hypoventilation requiring tracheostomy and ventilatory support. Over a 12-month period, her ventilation requirement reduced to overnight ventilator support only and she could tolerate a speaking valve on her tracheostomy.

She was initially referred to the rehabilitation team, following surgery, for an inpatient rehabilitation program. Table 65.1 shows her WeeFIM™ scores at the time of admission and again at the time of discharge from the hospital to her home. The WeeFIM™ norm score for a 6-year-old child in the self-care domain is 51, for mobility domain 34, and cognition domain 33. These are compared with Sarah’s admission scores of 11, 7, and 21 in these respective domains. At the time of discharge, her WeeFIM™ score total had increased to 66.

Table 65.1

Sarah’s WeeFIM™ scores on admission and discharge

Domain	Item score		Domain score
Self-care	Admission	Discharge	Admission	Discharge
Eating	1	3
Grooming	1	2
Bathing	1	2
Dressing – upper body	2	3
Dressing – lower body	1	3
Toileting	1	2
Bladder control	2	3
Bowel control	2	3
Domain total			11	21
Mobility
Transfer chair/wheelchair	2	4
Transfer toilet	1	4
Transfer bath/shower	1	4
Walk/wheelchair/crawl	2	5
Stairs	1	1
Domain total			7	18
Cognition
Comprehension	5	5
Expression	4	6
Social interaction	4	5
Problem solving	4	5
Memory	4	6
Domain total			21	27
Total			39	66

Soon after referral to the rehabilitation program, Sarah’s keyworker from the rehabilitation team completed her initial WeeFIM™ assessment and met with Sarah and her family to discuss the results and determine her treatment goals. These included independent floor mobility, bowel and bladder continence, and playing and talking with her peers for short periods without need for adult supervision. These goals were agreed to by her family and the team and formed the basis of her interdisciplinary inpatient rehabilitation program. The family used the KIT [3] to store information about Sarah and found this useful and empowering when meeting with the many different health professionals.

Table 65.2 illustrates how these goals may also be recorded and scored using the COPM. In our setting, the WeeFIM™ is used in the inpatient setting where the rehabilitation focus is more towards the ICF domains of body structure and function and activity. In the outpatient setting, we have found the COPM more useful as the child’s goals and rehabilitation program move more towards activity and participation domains.

Table 65.2

COPM scores at the start and end of outpatient rehabilitation program

Canadian occupational performance measure©
	Initial assessment		Reassessment
Occupational performance problems	Performance	Satisfaction	Performance	Satisfaction
1. Transfers floor to chair	3	2	6	5
2. Bowel/bladder continence	3	4	4	6
3. Playing/talking with peers	3	3	5	7
Change in performance = reassessment performance score 5 – initial performance score 3 = 2^a
Change in satisfaction = reassessment satisfaction score 6 – initial satisfaction score 3 = 3^a

^aTotal score = Total performance or satisfaction scores/number of problems

The rehabilitation team operationalized these goals with family and child education, a strengthening program to upper and lower limbs to improve transfers/floor mobility, and appropriate prescription of equipment such as a manual wheelchair. Botulinum toxin A was injected into hip adductors (adductor longus and gracilis) to reduce scissoring of legs when standing and stepping and improve cross leg sitting on floor. Advice was given on home and school modifications including ramps, grab bars, and accessible toilets. A range of psychometric assessments were used to test cognition, behavior, and executive function. The psychologist informed both the team and family about her neuropsychological profile. Testing of executive function showed reduced ability to hold and manipulate information, and information processing speed was reduced. Information was then given in smaller chunks, both verbally and visually, repeated more often and with longer breaks to prevent cognitive fatigue. The school was informed and appropriate modifications made to Sarah’s academic program. Funding was sought for a teacher’s aide to assist Sarah with clean intermittent catheterization and daily bowel program. Involvement of a clinical psychologist to assist Sarah with return to school, self-perception, and mood was recommended but declined by the family.

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