Linking a short-stature specific health-related quality of life measure (QoLISSY) to the International Classification of Functioning – Children and Youth (ICF-CY)

Abstract

Purpose: The study aimed to examine and compare the content of the quality of life in short-stature youth questionnaire (QoLISSY) with the International Classification of Functioning, Disability and Health – Children and Youth (ICF-CY). Methods: Items of the QoLISSY questionnaire for children/adolescents and their parents were coded within the framework of the ICF-CY. Linkage was performed according to predetermined standards by two health professionals experienced in the conceptual fundaments of the ICF-CY. Results: Within the linking process 58 meaningful concepts were identified from the 55 items out of the QoLISSY parent questionnaire and 55 meaningful concepts from the 50 items of the QoLISSY (children) questionnaire. In total, 57 concepts (parent-questionnaire) and 54 concepts (children-questionnaire) were linked to the different categories of the ICF-CY. Twenty-seven categories (parents-version) and 20 categories (child-version) referred to the component body functions, 34 categories (parent-version) and 30 categories (child-version) represented the activity and participation component and in each version 30 categories represented the environmental factors component. Conclusions: The present study indicates that the ICF-CY provides a useful frame of reference to compare and examine the content of HrQoL instruments for short-statured children and adolescents and their parents. The linkage of the QoLISSY instrument within the framework of the ICF-CY translates its content into a universal language.

Implications for Rehabilitation

• The linkage of Quality of Life – Questionnaires to the ICF-CY provides guidance for clinicians and researchers in the selection of appropriate instruments complying with ICF categories.

• Linking the QoLISSY instrument to the ICF may raise awareness in clinicians and researchers about domains relevant for young people with short-stature from a well-being and functioning perspective.

• In the linkage exercise, the ICF serves as a reference matrix which can be used to compare and better understand QoL domains of different instruments.

• With the linkage, effects of interventions as assessed via QoLISSY can be tied to ICF categories.

• Health-related quality of life
• ICF-CY
• short-stature

Acknowledgements

The authors wish to acknowledge the European QoLISSY Group for providing the QoLISSY instrument as well as their consent to link the questionnaire to the ICF-CY. Members of the QoLISSY group are Dr Julia Quitmann, Anja Rohenkohl, Prof. Dr Monika Bullinger (University Medical Center Hamburg-Eppendorf, Department of Medical Psychology, Hamburg, Germany), Dr. John E. Chaplin (Sahlgrenska Academy at the University of Gothenburg, Department of Pediatrics, Växthuset, Queen Silvia's Children's Hospital, Sweden), Michael Herdman, Dolores Sanz (IMIM University, Insight Consulting and Research, Barcelona, Spain), Dr Emmanuelle Mimoun, Eva Feigerlova, MD PhD (University of Toulouse, Department of Pediatric Endocrinology, Toulouse, France), Kendra DeBusk, Prof. Dr Michael Power (University of Edinburgh, Department of Clinical Psychology, Edinburgh, Scotland), Prof. Dr Hartmut Wollmann, (University Children's Hospital Tuebingen), Andreas Pleil, PhD (Pfizer, Inc. Specialty Care MDG, Outcomes Research, San Diego, CA).

Declaration of interest

The development of the QoLISSY and its validation was funded by Pfizer Limited. The authors report no conflict of interests. The authors alone are responsible for the content and writing of the article. Authors received no compensation for their contributions to this article.