Skip to main content

Table 2 Questionnaire B: Please estimate the minimal effectiveness of a hypothetical 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

Pain reaction Exposure % Effectiveness (between 0 and 100)
You suffer from intolerable pain: 1.1. After 12 hours of sunlight exposure  
  1.2. After 10 hours of sunlight exposure  
  1.1. After 6 hours of sunlight exposure  
  1.2. After 3 hours of sunlight exposure  
  1.1. After 1 hour of sunlight exposure  
  1.2. After 30 minutes of sunlight exposure  
  1.1. After 30 minutes of sunlight exposure  
You suffer from strong pain: 2.1. After 12 hours of sunlight exposure  
  2.2. After 10 hours of sunlight exposure  
....you suffer from moderate pain; you suffer from mild pain...
You don't suffer from pain: 5.1. After 12 hours of sunlight exposure  
  5.2. After 10 hours of sunlight exposure  
  5.3. After 6 hours of sunlight exposure  
  5.4. After 3 hours of sunlight exposure  
  5.5. After 1 hour of sunlight exposure  
  5.6 After 30 minutes of sunlight exposure  
  5.7 After 15 minutes of sunlight exposure  
  1. During summer time (season of the highest risk) you expose yourself to the sun and afterwards you have a reaction specified below