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Table 1 Questionnaire A: Please estimate the minimal effectiveness of a particular medical treatment for EPP in percent between 0 and 100.

From: Patient-recorded outcome to assess therapeutic efficacy in protoporphyria-induced dermal phototoxicity: a proposal

Exposure

Pain reaction

% Effectiveness (between 0 and 100)

After 12 hours sunlight exposure:

1.1. You suffer from intolerable pain

 
 

1.2. You suffer from strong pain

 
 

1.3. You suffer from moderate pain

 
 

1.4. You suffer from mild pain

 
 

1.5. You don't suffer from pain

 

After 10 hours sunlight exposure:

2.1. You suffer from intolerable pain

 
 

2.2. You suffer from strong pain

 

....After 6, 3, 1 hour, 30 minutes...

After 15 minutes sunlight exposure:

7.1. You suffer from intolerable pain

 
 

7.2. You suffer from strong pain

 
 

7.3. You suffer from moderate pain

 
 

7.4. You suffer from mild pain

 
 

7.5. You don't suffer from pain

 
  1. During summer time (season of the highest risk) you expose yourself to the sun and afterwards you have a reaction specified below