Validation of the sunlight exposure diary and the erythropoietic protoporphyria impact questionnaire (EPIQ).

ABSTRACT:

Background

Erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) are rare disorders that can negatively affect one's health-related quality of life (HRQoL) because of pain from phototoxic reactions and the avoidance of sun exposure that is recommended. There is a need for reliable and valid patient-reported outcome measures (PROMs) that address all aspects of EPP/XLP, including symptoms and impacts. Our objective was to assess 2 recently developed PROMs, the Sunlight Exposure Diary and the EPP Impact Questionnaire (EPIQ), to determine their factor structure and explore their psychometric properties.

Results

During a clinical trial conducted from January 2023 to August 2024 evaluating an oral therapy to improve sunlight tolerance in adults, participants with E

SUBMITTER: Naik H 

PROVIDER: S-EPMC12486579 | biostudies-literature | 2025 Sep

REPOSITORIES: biostudies-literature