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Table 1 EB-specific articles used in producing recommendations

From: Pain care for patients with epidermolysis bullosa: best care practice guidelines

Study citation Study type Population (setting, patients) Intervention/Comparison groups Outcomes
Chiu 1999 [68] Case report Country: Canada Setting: Children’s Hospital Age: 11 years Gender: Male Patient with Severe JEB Amitryptiline (25 mg at night) was prescribed and patient started on a program of cognitive behavioral training (hypnotic imagery, distraction). Oral midazolam (7.5 mg) was initiated 20 minutes prior to bath or dressing change Pain management
Goldschneider 2010 [41],[42] Review articles Country: United States Setting: Children’s Hospital Patients with EB Pain management and prevention Pain management
Herod 2002 [44] Review article Country: England (London) Setting: Children’s Hospital Patients with EB General pain management Pain management
Mellerio 2007 [152] Review article Country: United States, England, Chile Setting: Hospital Patients with EB Medical management General pain management
Saroyan 2009 [156] Case report Country: United States Setting: Hospital Female infant with EBS, severe, Dowling-Meara subtype Use of IV ketamine given orally Oral administration of IV ketamine (10 mg/mL, Monarch Pharmaceuticals) at a starting dose of 0.5 mg (0.125 mg/kg/ dose) Over four days, the dose was titrated to 3 mg (0.75 mg/kg/dose) in response to observed effect Achieve analgesia during painful dressing changes
van Scheppingen 2008 [4] Qualitative study (Interviews) Country: Netherlands Setting: Center for Blistering Diseases Age: 6 to 18 years Children with different (sub)types of EB) Interviews conducted at homes or in hospital Questions explored were: (i) What problems do children with EB actually experience as being the most difficult? (ii) What is the impact of these problems on their daily life? (iii) Are there differences in experiences between mildly and severely affected children? Themes of pain for severe disease (generalized blistering with motion impairment) and for mild disease (localized blistering or generalized blistering without motion impairment).
Watterson 2004 [74] Case report Country: United States Setting: Hospital Children with EB using peripheral opioids Topical morphine gel applied to the most painful areas of skin at that time for each child Pain scores
  1. EB, epidermolysis bullosa, EBS, epidermolysis bullosa simples; JEB, junctional epidermolysis bullosa.