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Table 6 Areas of research

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

Psychological and integrative approaches:
1. Test the efficacy of well-established cognitive behavioral interventions for acute and chronic pain management in EB.
2. Develop EB-specific pain assessment measures for both acute and chronic pain.
3. Evaluate the efficacy of cognitive behavioral therapy for EB-related pruritus
4. Evaluate the role for Integrative Medicine techniques for the EB population.
Acute pain:
1. Improve the balance between analgesia and side effects specific to EB (for example, itching).
2. Establish optimal treatment of needle-related pain.
3. Define the role for ketamine and other non-opioid agents.
Chronic and recurrent pain:
1. Evaluate topical therapies including opioids, local anesthetics and NSAIDs.
2. Determine optimal environmental interventions for bath and dressing changes including bath additives (salt, bleach, oatmeal).
3. Define optimal perianal pain therapies.
4. Clarify the role of bone density screening in preventing bone pain and fractures.
5. Determine the role of topical NSAIDs in treatment of corneal abrasion pain.
6. Explore the role for various physical and occupational therapy interventions for joint, bone and back pain.
Infants:
1. Validate observational pain scales in the setting of bandaged infants.
2. Determine the safety and dosing of adjunct medications, such as gabapentin and topical agents.
Pruritus:
1. Establish the mechanisms of pruritus in EB and effective treatment thereof.
2. Refine the management of opioid-exacerbated itch.
End of life:
1. Define how best to integrate palliative care into the overall care of patients with EB prior to end of life.
2. Define optimal treatments for pain at the end of life.