Current experiences with the prosthetic upper extremity functional index in follow-up of children with upper limb reduction deficiency

The aims of this study are to evaluate the (1) functioning of the children with upper limb reduction deficiency (ULRD) in our centers using the prosthetic upper extremity functional index (PUFI); (2) use of the PUFI as a standardized procedure in the assessment and monitoring of children with ULRD on an individual and a group level and as a follow-up instrument in users and nonusers; and (3) use of the Prosthetic Activities Score (PAS), a score for users in which only those activities for which the prosthesis is actually used are scored. The prospective study was performed in two outpatient clinics of rehabilitation medicine and the subjects included forty children with ULRD aged 4-18 years. The subjects were included from the outpatient clinics of the Erasmus University Medical Centre and the University Medical Centre Groningen; 23 were prosthetic users and 17 were nonusers. Main outcome measures included sum scores (0-100) for ease of performance with and without prosthesis and usefulness of the prosthesis, plus the PAS. Two scales of the PUFI were used in nonusers. The feasibility of the PUFI for patient monitoring and clinical research is evaluated. Children with ULRD perform well on daily activities with and without prosthesis, and both users and nonusers can do almost all activities. Users find prosthesis use in half of the activities beneficial. The PAS score is useful to get more valid scores on the actual ease of performance with the prosthesis and its usefulness. Younger children (<12 years) use their prosthesis more actively than older children (>12 years; 31% vs. 11%). In follow-up measurements, children tended to improve on ease of performance and perceived usefulness. Changes in individual scores seem to correlate with clinical observations. Both children, with and without prosthesis, function well. This is in accordance with our approach that not all children need to have prostheses. Standardized assessment of functional activities in children with ULRD using the PUFI is useful for clinical judgment and adequate goal setting, and for patient monitoring. Recommendations to improve the use of the PUFI include an adaptation of the PUFI scores (PAS) and a version for nonusers. In our opinion, broad (inter)national use of the PUFI will give the necessary feedback on the interpretation of PUFI results.

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