Abstract Number: PB0782
Meeting: ISTH 2021 Congress
Background: Haemophilia and anticoagulation therapy have a significant effect on children’s quality of life (QoL) due to an increased risk of bleeding, repeated painful procedures and multiple hospital visits. Hence, the tools used to assess QoL in these children must accurately represent their lived experiences.
Aims: This scoping review aimed to identify the existing QoL tools for children with haemophilia or receiving anticoagulation therapy and evaluate the validity, reliability and responsiveness of each tool.
Methods: A comprehensive search was undertaken using MEDLINE, CINAHL and Embase. Studies reporting the development or validation of QoL tools in children (aged 0-18) with haemophilia or receiving anticoagulation were included. The search was limited to articles published in English within the last 20 years. The Joanna Briggs Institute Methodology for Scoping Reviews was followed for methodological quality and data extraction. The COnsensus-based Standards for the selection of health status Measurement Instruments (COSMIN) checklist was used for evaluating the validity, reliability and responsiveness of the QoL tools.
Results: Initial searches identified 423 studies, but 16 studies were included for evaluation. Five QoL tools were identified, consisting of four haemophilia specific and one anticoagulant specific tool. Each tool demonstrated validity and reliability to an extent but were limited by poor methodological quality. The Haemo-QoL and KIDCLOT PAC QL© tools demonstrated the best methodological quality.
Conclusions: Currently available QoL tools for children with haemophilia or receiving anticoagulation are appropriate, yet all have discrete methodological limitations. In an era where clinical outcomes of treatment are recognized to provide only a partial measure of the success of therapy, the limitations of these tools need to be acknowledged and efforts to optimize the accurate measurement of QoL implemented. Further research is required to report on measurement error and construct validity of paediatric QoL for both disorders.
To cite this abstract in AMA style:
Jones S, Bushe J, David H, Dinh C, Kolosidhi K, Rai D, Newall F. Children with Bleeding and Clotting Disorders: Reviewing Quality of Life Tools [abstract]. Res Pract Thromb Haemost. 2021; 5 (Suppl 2). https://abstracts.isth.org/abstract/children-with-bleeding-and-clotting-disorders-reviewing-quality-of-life-tools/. Accessed December 7, 2021.« Back to ISTH 2021 Congress
ISTH Congress Abstracts - https://abstracts.isth.org/abstract/children-with-bleeding-and-clotting-disorders-reviewing-quality-of-life-tools/