How to assess and report outcome for neonatal brachial plexus palsy. Results from the iPluto survey.
Willem Pondaag, MD, PhD; Martijn JA Malessy, MD, PhD; Department of Neurosurgery, Leiden University Medical Center, Leiden, Netherlands
Background
It is difficult to assess from the available literature optimal treatment strategies for children with a neonatal brachial plexus palsy (NBPP) - or ‘obstetric brachial plexus lesion’. Comparison of outcome data presented by different centers is impossible due to the use of 1) many different outcome measures to evaluate results; 2) different follow-up periods after interventions and 3) different patient ages at the time of assessment.
Objective
The goal of iPluto (international PLexus oUtcome sTudy grOup) was to define an international minimal dataset to evaluate upper limb function of NBPP children in a standardized fashion. This dataset should allow for comparison of results between different clinics if prospectively used. The iPluto dataset should be regarded as the basic information that should be minimally be collected. It was aimed for that all domains of the ICF were represented.
Methods
The tool to reach consensus on the datasets were internet surveys in three rounds. A Delphi-derived technique was applied using a 9 point Likert scale. Consensus was defined as a rating of 7/8/9 by 75% of participants.
Results
A total of 59 participants from 5 continents participated to both Rounds 2 and 3. There was >75% consensus that evaluation should take place at standardized age points: at the age of 1 / 3 / 5 / 7 years. There was consensus to assess passive range of motion (pROM), active range of motion in degrees (aROM), and the Mallet score as primary outcomes. No consensus was reached for other items, e.g. Active Movement Scale, force (MRC), Gilbert shoulder score, Raimondi hand score, testing sensation and pain. Only 19% of participants judged themselves as able to properly evaluate Patient Reported Outcome Measures (PROMs).
Conclusions
Consensus on how to asses and report outcome for NBPP was reached on a number of items. All these items represent motor items in ‘Body Function and Structure’, which represents a very basic set of outcome parameters only. There may be a need for items from additional ICF domains in a more elaborate set of outcome items, which shall be addressed in a future set of questionnaires.
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