Use of a subcutaneous syringe driver in epidermolysis bullosa

B, O'Neill; Lucas, C Villar; Gannon, Caitlin

doi:10.1177/026921630101500114

Cited by 1 publication

(2 citation statements)

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“…There has been an historic reluctance to use continuous subcutaneous infusions, due to the fear of precipitating further blistering. However, subcutaneous infusions have been reported to be tolerated in the final days of life in an adult EB patient [ 176 ] (see Box 9).…”

Section: Resultsmentioning

confidence: 99%

“…Opioid rotation may need to be considered to improve analgesia and reduce side effects, and adjuncts may need to be added B All Eisenberg 2009 [ 174 ] (1a), Quigley 2010 [ 172 ] (1a), Davies 2008 [ 61 ] (4a), Bruera 1996 [ 171 ] (4b), Watterson 2005 (5b) Consider targeted medication for neuropathic pain when pain proves refractory to conventional therapies D All Allegaert 2010 (5a), Saroyan 2009 (5a). Clements 1982 (5a), Watterson 2005 [ 87 ] (5b) Continuous subcutaneous infusion of combinations of medication is an option when parenteral therapy is needed in the terminal phase C All Reymond 2003 [ 178 ] (2b), O’Neil 2001 [ 176 ] (5a), Watterson 2005 [ 87 ] (5b) Where needed, breakthrough medication can be given transmucosally (oral or nasal) for rapid onset and avoidance of the enteral route B All Zeppetella 2009 [ 182 ] (1a) J. A combination of environmental, cognitive-behavioral and pharmacologic therapies are available for use for EB-related pruritus, which can be a severe symptom of the disease.…”

Section: Methodsmentioning

confidence: 99%

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

Goldschneider

Good

Harrop³

et al. 2014

BMC Med

120

108

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BackgroundInherited epidermolysis bullosa (EB) comprises a group of rare disorders that have multi-system effects and patients present with a number of both acute and chronic pain care needs. Effects on quality of life are substantial. Pain and itching are burdensome daily problems. Experience with, and knowledge of, the best pain and itch care for these patients is minimal. Evidence-based best care practice guidelines are needed to establish a base of knowledge and practice for practitioners of many disciplines to improve the quality of life for both adult and pediatric patients with EB.MethodsThe process was begun at the request of Dystrophic Epidermolysis Bullosa Research Association International (DEBRA International), an organization dedicated to improvement of care, research and dissemination of knowledge for EB patients worldwide. An international panel of experts in pain and palliative care who have extensive experience caring for patients with EB was assembled. Literature was reviewed and systematically evaluated. For areas of care without direct evidence, clinically relevant literature was assessed, and rounds of consensus building were conducted. The process involved a face-to-face consensus meeting that involved a family representative and methodologist, as well as the panel of clinical experts. During development, EB family input was obtained and the document was reviewed by a wide variety of experts representing several disciplines related to the care of patients with EB.ResultsThe first evidence-based care guidelines for the care of pain in EB were produced. The guidelines are clinically relevant for care of patients of all subtypes and ages, and apply to practitioners of all disciplines involved in the care of patients with EB. When the evidence suggests that the diagnosis or treatment of painful conditions differs between adults and children, it will be so noted.ConclusionsEvidence-based care guidelines are a means of standardizing optimal care for EB patients, whose disease is often times horrific in its effects on quality of life, and whose care is resource-intensive and difficult. The guideline development process also highlighted areas for research in order to improve further the evidence base for future care.Electronic supplementary materialThe online version of this article (doi:10.1186/s12916-014-0178-2) contains supplementary material, which is available to authorized users.

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Section: Resultsmentioning

confidence: 99%