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. |