Tuesday, April 16, 2024

New Quality of Life Scale for Hemophilia: Bridging the Gap in Patient Care and Research

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Quality of life (QoL), a measure of a person’s well-being, is vital for understanding the experiences of individuals living with hemophilia. The creation of a quality of life scale specifically targeted at this population can greatly benefit physicians and patients alike.

The research process involved a textual analysis and systematic review of existing studies on QoL, hemophilia, and related scales. The Springer database was combed through in two rounds to filter relevant literature. This exhaustive process involved assessing documents by title and abstract.

The initial search yielded a vast number of articles, chapters, and bibliographies. The first phase included 77,456 articles, 26,117 chapters, and 7,086 related bibliographies. The second phase, focusing on hemophilia-targeting QoL scales, initially retrieved 211 articles, 118 chapters, and 43 related bibliographies.

Quality of Life

A Call for Global Adoption of Specialized Quality of Life Scales

Upon further filtering, a total of 22 documents were selected from the first phase, yielding 1,431 valid word stems. From the second phase, 9 documents were selected, yielding 1,541 valid word stems. The results highlight the extensive body of research conducted on QoL and hemophilia.

While the universal quality of life scales align with the broad framework of WHOQOL-BREF, scales for hemophilia tend to focus on patient suffering and advancements in pharmaceutical technology. Current hemophilia quality of life scales are mostly based on the HR-QoL. However, their adoption in developing countries like China is not widespread, indicating an insufficiency in the development of these scales.

 

Original Article DOI: 10.3389/fpubh.2024.1294188

Original title: The hemophilia quality of life scale: a systematic review

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