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Table 1 Key revisions made to sunlight exposure diary based on cognitive debriefing interviews

From: Development and content validation of a sunlight exposure diary in patients with erythropoietic protoporphyria

Original wording of questions

Key revisions

No instructions provided

Added instructions

Have you experienced any reactions to light today?

Revised to ask about early warning symptoms and full reactions

N/A

Added question to ask whether the reaction was new or continuation from prior day

If yes, please indicated on the scale below how bad your pain was from the reaction

Revised to ask about pain from a full reaction at its worst

Revised response options (removed some of the labels on the pain scale)

Did you spend any time outdoors today?

“Direct or indirect” added to clarify that respondent should consider all sources of sunlight

If yes, please enter the time period that you were in direct sunlight (Each box represents 15 min)

Question revised to ask about minutes in sunlight (direct and indirect) between 6:00 am and midnight

Revised from recording in 15 min blocks to exact minutes

Tested a version recording stop/start times but based on feedback total number of minutes used instead

If yes, please enter the time period that you were in shade

Item omitted—respondents did not find it relevant

N/A

Added questions about symptoms experienced (e.g., “feelings of warmth”, “sensitivity to touch”, “tingling”, “burning”, etc.) and the severity of each symptom (mild, moderate, severe)

Questions use 24-h recall period

Changed to insert day/date (e.g., Monday, February 27)