Human functioning of patients after hematopoietic stem cell transplantation displayed with the International Classification of Functioning, Disability, and Health: a Delphi study

Abstract

Background: The number of patients undergoing hematopoietic stem cell transplantation (HSCT) is growing worldwide. The treatment has a major impact on the daily functioning of patients. In improving one’s health, patients’ functioning should be included as a focus in health care. Functioning can be described with the International Classification of Functioning, Disability, and Health (ICF). The ICF describes all aspects of health and well-being in terms of human functioning within the components “body functions and body structures”, “activities and participation”, and “environmental factors”. Aim: To identify the most relevant ICF categories for the functioning of hematology patients after autologous and allogeneic stem cell transplantation. Method: A two-round Delphi study was performed with an exploratory, sequential mixed methods design to reach consensus on relevance of ICF categories. Participants were 33 nurses of the eight universal medical centres in the Netherlands and 10 patients via a patient association. In both rounds participants ranked the relevance of ICF categories in a quantiative section. In the first round participants could add aspects (qualitative section) they missed in the quantitative part of the first round. Results: After two rounds consensus was reached on 34 categories for the autologous and 53 categories for the allogeneic HSCT. All 34 categories for the autologous HSCT are also represented in the 53 categories for the allogeneic HSCT. Most categories added by participants were related to the component “activities and participation”. Conclusion and implications: This research provides a step toward the development of a core set for health professionals, which could be a standard for describing HSCT patients’ functioning in clinical practice, and research or evaluation of health care focusing on what matters to those affected. Pilot testing in clinical practice is the next to step to confirm the core set’s validity and applicability.