The ICF Update and Revision Platform – what issues do reviewers raise? J Jelsma1 M Cuenot2 F Gongolo3, C Sykes4 1 University of Cape Town, 2 Ecole des Hautes Etudes en Santé Publique (EHESP), 3 Friuli Venezia Giulia Central Health Directorate 4 World Confederation for Physical Therapy (WCPT), United Kingdom

Background The International Classification of Functioning, Disability and Health (ICF) was adopted in 2001 and, as was expected, increased usage has exposed inconsistencies and deficiencies in the classification. The development of the Children and Youth version of ICF (ICF-CY), released in 2007, did not only add content to the ICF, but identified other issues that needed attention. Following the decision to incorporate the amendments made for the ICF-CY into the foundation layer of the ICF, in 2010, a large number of proposals were loaded onto the platform for review. In addition, over the last 4 years, other users have also submitted update proposals for review.

Objectives of study All of these proposals underwent a standardised review process, in collaboration with members of the FDRG, and often leading to modification before a final vote by members of the URC. The reviewers raised various types of objections and suggested different amendments to the proposals An analysis of the nature of the reviews proposed and the reviewer’s comments was undertaken to identify the type of issues raised. .

Methods A data collection template was developed by the authors. Every proposal that was on the platform and that had passed through review by the FDRG was included (144). Each proposal was reviewed and the comments classified as relating to lexical or language use including inclusion of examples ontological e.g. difficulties with placement in the classification, overlap with other codes and granularity. In addition, issues that were unresolved were flagged and presented.

Results Most of the proposals originated from the CY (87%). They related to Activity/ Participation, followed by Body Functions and Environmental Factors components. Changes in notes were the most common type of proposal, followed by addition of 2nd , 3rd & 4th level codes.

Results – Lexical Problems Lexical problems were identified in 50% including: trivial grammatical correction cross-cultural applicability (e.g. scooting); scientific meaning of words (nutrition) and the inclusion of examples applicable across the life span.

Results - Ontological Ontological problems were identified in 49% of the proposals. Issue No Example Overlap between codes 23 Indicating the need for toileting – Self care and Communication? Placement of codes 16 Play in children - Recreation or Major Life Activity? Applicability across the life span 15 If there are codes that relate exclusively to children, there should maybe be similar codes and examples for gender or other groups. Granularity 13 Structure of the white matter of the nervous system Parent/child issues 10 At what level should Genital Functions associated with arousal of the genitals be inserted?) Consistency with in codes and with other codes 6 Looking after one’s health –d5702 refers to 'drugs' so should the proposal for d57022 refer to 'drugs including alcohol' rather than 'drugs and alcohol Distinctions between basic/complex 2 The higher level code is organised around components of basic interpersonal interactions;"initiating and maintaining social interactions" in my view are complex - not basic Use of neutral terms The inclusion of “respect” was rejected as it is value laden and not neutral

Results – Unresolved issues These might only be resolved by ontological revision Parent/child relationships e.g. undertaking a single task and undertaking multiple tasks both potentially logical parents of other A&P items the definition of temporal aspects of functioning, e.g. lags, delays, time taken to complete a task; the overlap between different chapters, e.g. Writing/reading and Communication; the inclusion of activity codes in a developmental sequence, e.g rolling over inserted after standing and bending; cross-cultural approach to coding special education without marginalising children.

Conclusions The Update process is essential to ensure that the ICF is a living classification, responsive to changes in scientific knowledge, evolving technology and growth in cultural understanding. This preliminary review has highlighted the need for an ontological review to deal with these emerging challenges

Acknowledgements Funding from the University of Cape Town Research Committee is gratefully acknowledged. The review process is made possible by the thoughtful participation of FDRG and URC members. Their commitment, insight and dedication are recognised