Cannabinoid use and effects in patients with epidermolysis bullosa: an international cross-sectional survey study
Abstract
Background: Epidermolysis bullosa (EB) patient anecdotes and case reports indicate that cannabinoid-based medi cines (CBMs) may alleviate pain and pruritus and improve wound healing. CBM use has not been characterized in the
EB patient population.
Objectives: To evaluate CBM use among EB patients, including CBM types, efects on symptoms (e.g., pain and pru ritus), disease process (e.g., blistering, wounds, and infammation), well-being (e.g., sleep, appetite) and concomitant
medications.
Methods: English-speaking EB patients or caregivers completed an online international, anonymous, cross-sectional
survey regarding CBM use. Respondents reported the types of CBMs, subsequent efects including perceived EB
symptom alteration, changes in medication use, and side efects.
Results: Seventy-one EB patients from fve continents reported using or having used CBMs to treat their EB. Miss ing question responses ranged between 0 (0%) and 33 (46%). Most used more than one CBM preparation (mean:
2.4±1.5) and route of administration (mean: 2.1±1.1). Topical and ingested were the most common routes. Pain and
pruritus were reported retrospectively to decrease by 3 points (scale: 0–10; p<0.001 for both) after CBM use. Most
reported that CBM use improved their overall EB symptoms (95%), pain (94%), pruritus (91%) and wound healing (81%).
Most participants (79%) reported decreased use of pain medications. The most common side-efect was dry mouth
(44%).
Conclusions: CBMs improve the perception of pain, pruritus, wound healing, and well-being in EB patients and
reduced concomitant medication use. Nevertheless, a direct relation between the use of CBMs and reduction of the
above-mentioned symptoms cannot be proven by these data. Therefore, future controlled studies using pharmaceu tically standardised CBM preparations in EB are warranted to delineate the risks and benefts of CBMs.
Keywords: Epidermolysis bullosa, Cannabinoid-based medicines, Symptom alleviation, Patient driven research,
Genodermatoses, Survey, Pain, Itch, Wounds
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