Assessing activity limitations in patients with neuromuscular diseases: is the ACTIVLIM questionnaire linked to ICF and ICF-CY?

Abstract

The objective of this study was to explore to what extent the ACTIVLIM questionnaire, designed to evaluate limitations in activities involving upper and lower limbs in adults and children with neuromuscular diseases, is linked to the domains of the Activities and Participation of the International Classification of Functioning, Disability and Health (ICF), and to its Children and Youth version (ICF-CY). Standardized ICF linking rules were applied. Items were linked to the most specific ICF-CY codes (e.g. d4501 - Walking long distances), and rolling-up procedures were applied to report information to more generic and informative upper-level codes (e.g. d450 - Walking). ACTIVLIM items were linked to 13 second-level ICF codes of Mobility, Self-care, and Domestic life chapters. The majority of ACTIVLIM items are liked to d510 - Washing oneself, d445 - Hand and arm use, and d410 - Changing basic body position. None of the ACTIVLIM items links to the codes added by the new ICF-CY classification. Disability is a multidimensional phenomenon, and measurements of disability should reflect this multidimensionality. The good psychometric properties of ACTIVLIM are demonstrated, and the aim of this mapping exercise is to provide information on its content. A relevant part of ACTIVLIM items is linked to a few ICF codes, referred to as basic body movements and washing, and other activities are less represented. We think that the ACTIVLIM covers a circumscribed set of activities and, therefore, we suggest using it together with other functional evaluation tools, to complement the range of information on activity limitations that are not covered by its items.