Health-Related Quality of Life (HRQoL) in Research on Adult Rare Solid Cancers: A Comprehensive Review

The manuscript aims to fill critical gaps by focusing on the current instruments and existing strategies to assess HRQoL in patients with a solid rare cancer, fostering understanding and paving the way for better care strategies.

The results show that although HRQoL has gradually become more present in research, a significant gap exists. Thinking of the future, we need to keep in mind either having a combination of generic, tumour-specific, and domain-specific questionnaires to capture issues these patients face or the aim to develop comprehensive and robust HRQoL measurement strategies and tools to ensure good clinical research and make sure patient voices are incorporated in their clinical care.

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