Development of the Idiopathic Toe Walking Outcome (iTWO) proforma: a modified delphi study and online parent survey for measurement consensus

Background: Idiopathic toe walking (ITW) is an exclusionary diagnosis given when children toe walk without a medical reason. Treatment effectiveness studies rarely collect data other than ankle range of motion or presence of toe walking.

Research question: To develop a set of outcome measures identified by health professionals for use when providing treatment with children who have ITW, to understand if parents agreed with this set, and if parents believed they could perform these measures in clinician absence.

Methods: Study 1 developed consensus and agreement on outcome measures for children receiving treatment for ITW through the modified Delphi technique with 10 expert health professionals. Parents of children who toe walked were invited to participate in an online survey for the second study, in which they were asked to rate the importance of these measures and if they believed they may be able to collect the data about their child without the health professional being present.

Results: Ten health professionals developed nine questions and assessments through consensus and agreement over the three rounds. There were 34 parents providing information about satisfaction with toe walking assessments and treatments. Of these, 27 provide detailed responses about the outcome questions and assessments. The majority (91 % of 24 parents) in support of the outcome measures identified by experts. Parents expressed a willingness to self-complete questions or be taught assessments to monitor their child’s progress.

Significance: Use of these clinically based measures may enable consistent data collection regardless of the setting and provide the foundation for large data pooling in future treatment research.