Occupational therapy for epidermolysis bullosa: clinical practice guidelines

被引:0
|
作者
Jennifer M. Chan
Amy Weisman
Alex King
Susan Maksomski
Carrissa Shotwell
Claire Bailie
Helen Weaver
Rebecca Bodan
Estrella Guerrero
Matija Zmazek
Phuong Khuu
机构
[1] Lucile Packard Children’s Hospital Stanford,Department of Rehabilitation
[2] Phoenix Children’s Hospital,School of Nursing
[3] Brooklyn Methodist Hospital,undefined
[4] Cincinnati Children’s Hospital Medical Centre,undefined
[5] Sydney Children’s Hospital,undefined
[6] Community Project Lead DEBRA UK,undefined
[7] California State University Fullerton,undefined
[8] Community Social worker DEBRA Spain,undefined
[9] DEBRA Croatia,undefined
来源
Orphanet Journal of Rare Diseases | / 14卷
关键词
Epidermolysis bullosa; Occupational therapy; Clinical practice guideline; Activities of daily living;
D O I
暂无
中图分类号
学科分类号
摘要
The purpose of this article is to summarize the Dystrophic Epidermolysis Bullosa Research Association (DEBRA) International evidence-based Clinical Practice Guidelines (CPGs) for the provision of occupational therapy (OT) for children and adults living with inherited epidermolysis bullosa (EB). This is a rare genetic disorder characterized by skin fragility leading to blister formation occurring spontaneously or following minor trauma. Current OT practice for persons with EB is based on anecdotal care, clinical expertise and trial and error with collaboration between caregiver and patient. Intervention based on research is needed to establish a foundation of knowledge to guide international practitioners to create and improve standards of care and to be able to work effectively with those living with the rare diagnosis of this condition.
引用
收藏
相关论文
共 50 条
  • [41] Epidermolysis bullosa acquisita. Guidelines for the diagnosis and treatment
    Prost-Squarcioni, C.
    Ingen-Housz-Oro, S.
    Joly, P.
    Bernard, P.
    Bedane, C.
    ANNALES DE DERMATOLOGIE ET DE VENEREOLOGIE, 2011, 138 (03): : 274 - 279
  • [42] Occupational Therapy Practice Guidelines for Adults With Stroke
    Hildebrand, Mary W.
    Geller, Daniel
    Proffitt, Rachel
    AMERICAN JOURNAL OF OCCUPATIONAL THERAPY, 2023, 77 (05):
  • [43] Guidelines for the use of aides in occupational therapy practice
    Kanny, EM
    Edmondson, JM
    Kauffman, S
    Slater, DY
    Waddell, K
    Hertfelder, SD
    Youngstrom, J
    AMERICAN JOURNAL OF OCCUPATIONAL THERAPY, 1999, 53 (06): : 595 - 597
  • [44] CLINICAL MANIFESTATIONS OF EPIDERMOLYSIS BULLOSA DYSTROPHICA
    JOHNSTON, DE
    KOEHLER, RE
    BALFE, DM
    DIGESTIVE DISEASES AND SCIENCES, 1981, 26 (12) : 1144 - 1149
  • [45] Consensus guidelines for diagnosis and management of anemia in epidermolysis bullosa
    Carmen Liy-Wong
    Cristina Tarango
    Elena Pope
    Thomas Coates
    Anna L. Bruckner
    James A. Feinstein
    Agnes Schwieger-Briel
    Lynne D. Hubbard
    Clapham Jane
    Mauricio Torres-Pradilla
    Matija Zmazek
    Irene Lara-Corrales
    Orphanet Journal of Rare Diseases, 18
  • [46] The clinical spectrum of dystrophic epidermolysis bullosa
    Horn, HM
    Tidman, MJ
    BRITISH JOURNAL OF DERMATOLOGY, 2002, 146 (02) : 267 - 274
  • [47] Consensus guidelines for diagnosis and management of anemia in epidermolysis bullosa
    Liy-Wong, Carmen
    Tarango, Cristina
    Pope, Elena
    Coates, Thomas
    Bruckner, Anna L. L.
    Feinstein, James A. A.
    Schwieger-Briel, Agnes
    Hubbard, Lynne D. D.
    Jane, Clapham
    Torres-Pradilla, Mauricio
    Zmazek, Matija
    Lara-Corrales, Irene
    ORPHANET JOURNAL OF RARE DISEASES, 2023, 18 (01)
  • [49] The clinical spectrum of epidermolysis bullosa simplex
    Horn, HM
    Tidman, MJ
    BRITISH JOURNAL OF DERMATOLOGY, 2000, 142 (03) : 468 - 472
  • [50] 16 TYPES OF EPIDERMOLYSIS BULLOSA - ON THE CLINICAL DISCRIMINATION, THERAPY AND PRENATAL-DIAGNOSIS
    GEDDEDAHL, T
    ACTA DERMATO-VENEREOLOGICA, 1981, : 74 - 87