What question did this study set out to answer?

The study evaluates the content validity of the EQ-5D-5L and HUI for individuals with retinitis pigmentosa, including X-linked retinitis pigmentosa.

January 25, 2026Open Access

Content Validity of Two Generic Preference-Based Measures in Retinitis Pigmentosa, Including X-Linked Retinitis Pigmentosa

Key Points

The study evaluates the content validity of the EQ-5D-5L and HUI for individuals with retinitis pigmentosa, including X-linked retinitis pigmentosa.
Comparison of the EQ-5D-5L and HUI measures.
Identification of missing concepts relevant to retinitis pigmentosa.
Assessment of sensitivity to disease severity.
Both measures lack specific concepts important to patients with retinitis pigmentosa.
Reduced content validity may limit sensitivity to disease severity in these instruments.
Alternative utility estimation methods may be needed for this population.

Abstract

While the EQ-5D-5L and HUI include some content relevant to people with (XL)RP, both instruments appear to be missing concepts that are specifically relevant to this patient population, which could limit content validity and sensitivity to disease severity. Therefore, it may be useful to consider alternative methods for estimating utilities associated with (XL)RP.

Content Validity of Two Generic Preference-Based Measures in Retinitis Pigmentosa, Including X-Linked Retinitis Pigmentosa

Key Points

Abstract

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