Juvenile HD Functional Scale
The Following is an an adaptation of the Shoulson Scale. This scale can be applied to children with HD to help families understand which stage the affected person is in within the course of the disease, and to help guide treatment plans in school and at home.
Examples
Examples of the capabilities of a child in the various stages of HD are as follows:
Stage 1
Child shows only minor changes in academic performance but is participating in age-appropriate activities and personal skills
Stage 2
Child requires assistance and increased supervision at school and home.
Stage 3
Is a traditional stage – child may be performing a few, if any, academic or competitive activities. Safety at school and home become major issues, as well as the ability to perform activities such as dressing, grooming, and feeding. During this transitional stage, families may need outside help as the child’s care needs increase.
Stage 4 and 5
Often the child has reached young adulthood and requires constant supervision and nursing care either at home or in a nursing care facility.
Shoulsen Scale Use
To use the Shoulson Scale, review each section and add the points. The total points will indicate a stage of HD.
School Or Work Attendance
3 Attends school or work, no special assistance needed
2 Attends school or work with some modification or special assistance
1 Attends school or work, but no academic or competitive goals
0 Unable to attend school or work program
Academic/ Developmental Performance
3 Reading/writing/math skills appropriate to age
2 Mild decrease in academic performance but still able to take a test or to write
1 Unable to write legibly but able to communicate orally with unfamiliar persons
0 Unable to read/write/communicate orally
Chores
2 Able to assist in age-appropriate manner with household chores
1 Occasionally assists with chores
0 Unable to participate in household chores
Activities Of Daily Living
3 Performs self-care in an age-appropriate manner
2 Requires some assistance for bathing, dressing, grooming, or feeding
1 Assists others who bathe, dress, or feed him/her
0 Unable to assist in self care
Living
2 At home
1 At home/group home/foster care with outside assistance
0 Living in a long-term care facility
Results Of the Above
According to the Shoulson Scale, the stage is determined by adding the points, as shown:
11-13 points = Stage 1
7-10 points = Stage 2
3-6 points = Stage 3
1-2 points = Stage 4
0 points = Stage 5
What Is The Shoulson Scale?
Neither the Shoulson Scale nor the scale proposed here account well for children with severe behavioral or psychiatric problems who may score more poorly than their cognitive or motor skills would suggest. In addition, this adaptation of the Shoulson Scale has not been validated for use in research studies and is intended only as a rough guide to help families and other care providers.