Literature DB >> 29872677

Psychosocial impact of inherited and autoimmune blistering diseases.

Swaranjali V Jain1,2, Dedee F Murrell1,2.   

Abstract

Inherited and autoimmune blistering diseases are rare, chronic, and often severe disorders that have the potential to significantly affect patients' quality of life. The effective management of these conditions requires consideration of the physical, emotional, and social aspects of the disease. Self-esteem is integral to patients' ability to cope with their illness, participate in treatment, and function in society. This article discusses quality-of-life studies of patients with blistering diseases with a particular focus on self-esteem issues that patients may face.

Entities:  

Keywords:  Epidermolysis bullosa; autoimmune blistering disease; quality of life; self-esteem

Year:  2018        PMID： 29872677      PMCID： PMC5986115          DOI： 10.1016/j.ijwd.2017.11.004

Source DB:  PubMed          Journal:  Int J Womens Dermatol        ISSN： 2352-6475


  28 in total

1.  Main problems experienced by children with epidermolysis bullosa: a qualitative study with semi-structured interviews.

Authors:  Corinne van Scheppingen; Ant T Lettinga; José C Duipmans; Carel G B Maathuis; Marcel F Jonkman
Journal:  Acta Derm Venereol       Date:  2008       Impact factor: 4.437

2.  Health-related quality of life in epidermolysis bullosa: Validation of the Dutch QOLEB questionnaire and assessment in the Dutch population.

Authors:  Wing Yan Yuen; John W Frew; Kelly Veerman; Edwin R van den Heuvel; Dedee F Murrell; Marcel F Jonkman
Journal:  Acta Derm Venereol       Date:  2014-07       Impact factor: 4.437

3.  The psychosocial impact of epidermolysis bullosa.

Authors:  Emma Dures; Marianne Morris; Kate Gleeson; Nichola Rumsey
Journal:  Qual Health Res       Date:  2011-02-22

4.  Quality of life in epidermolysis bullosa.

Authors:  H M Horn; M J Tidman
Journal:  Clin Exp Dermatol       Date:  2002-11       Impact factor: 3.470

5.  Reliability of the autoimmune bullous disease quality of life (ABQOL) questionnaire in the USA.

Authors:  Deshan F Sebaratnam; Joyce Okawa; Aimee Payne; Dédée F Murrell; Victoria P Werth
Journal:  Qual Life Res       Date:  2015-03-21       Impact factor: 4.147

6.  A ski and adventure camp for young patients with severe forms of epidermolysis bullosa.

Authors:  Mary Alice Nading; Julien J Lahmar; John W Frew; Nicholas Ghionis; Martin Hanley; Anna Kemble Welch; Dedee F Murrell
Journal:  J Am Acad Dermatol       Date:  2009-09       Impact factor: 11.527

7.  Burden of disease during quiescent periods in patients with pemphigus.

Authors:  S Tabolli; C Pagliarello; A Paradisi; G Cianchini; P Giannantoni; D Abeni
Journal:  Br J Dermatol       Date:  2014-05       Impact factor: 9.302

8.  Development of a quality-of-life instrument for autoimmune bullous disease: the Autoimmune Bullous Disease Quality of Life questionnaire.

Authors:  Deshan F Sebaratnam; Anna Marie Hanna; Shien-ning Chee; John W Frew; Supriya S Venugopal; Benjamin S Daniel; Linda K Martin; Lesley M Rhodes; Jeremy Choon Kai Tan; Charles Qian Wang; Belinda Welsh; Tamar Nijsten; Dédée F Murrell
Journal:  JAMA Dermatol       Date:  2013-10       Impact factor: 10.282

9.  Self-esteem of severely burned patients.

Authors:  M L Bowden; I Feller; D Tholen; T N Davidson; M H James
Journal:  Arch Phys Med Rehabil       Date:  1980-10       Impact factor: 3.966

10.  Reliability and validity of the Chinese version of the autoimmune bullous disease quality of life (ABQOL) questionnaire.

Authors:  Baoqi Yang; Guo Chen; Qing Yang; Xiaoxiao Yan; Zhaoxia Zhang; Dédée F Murrell; Furen Zhang
Journal:  Health Qual Life Outcomes       Date:  2017-02-02       Impact factor: 3.186
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  9 in total

1.  Blistering disorders and their impact on women and their families in the International Journal of Women's Dermatology: Honoring the contributions of Professor Dedee Murrell.

Authors:  Maryam Daneshpazhooh; Akaterina Patsatsi; Snejina Vassileva; Jenny E Murase
Journal:  Int J Womens Dermatol       Date:  2022-03-22

Review 2.  Engineered antigen-specific regulatory T cells for autoimmune skin conditions.

Authors:  Zhussipbek Mukhatayev; Yekaterina O Ostapchuk; Deyu Fang; I Caroline Le Poole
Journal:  Autoimmun Rev       Date:  2021-01-18       Impact factor: 17.390

3.  Efficacy and tolerability of the investigational topical cream SD-101 (6% allantoin) in patients with epidermolysis bullosa: a phase 3, randomized, double-blind, vehicle-controlled trial (ESSENCE study).

Authors:  Amy S Paller; John Browning; Milos Nikolic; Christine Bodemer; Dedee F Murrell; Willistine Lenon; Eva Krusinska; Allen Reha; Hjalmar Lagast; Jay A Barth
Journal:  Orphanet J Rare Dis       Date:  2020-06-23       Impact factor: 4.123

Review 4.  Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines.

Authors:  K Martin; S Geuens; J K Asche; R Bodan; F Browne; A Downe; N García García; G Jaega; B Kennedy; P J Mauritz; F Pérez; K Soon; V Zmazek; K M Mayre-Chilton
Journal:  Orphanet J Rare Dis       Date:  2019-06-11       Impact factor: 4.123

Review 5.  Skin-Associated B Cells in the Pathogenesis of Cutaneous Autoimmune Diseases-Implications for Therapeutic Approaches.

Authors:  Tanja Fetter; Dennis Niebel; Christine Braegelmann; Joerg Wenzel
Journal:  Cells       Date:  2020-12-07       Impact factor: 6.600

6.  Assessing the quality of life in the families of patients with epidermolysis bullosa: The mothers as main caregivers.

Authors:  Fatemeh Chogani; Mohammad Mahdi Parvizi; Dedee F Murrell; Farhad Handjani
Journal:  Int J Womens Dermatol       Date:  2021-08-26

7.  The Risk of Depression in Patients with Pemphigus: A Nationwide Cohort Study in Taiwan.

Authors:  Yi-Min Hsu; Hsin-Yu Fang; Cheng-Li Lin; Shwn-Huey Shieh
Journal:  Int J Environ Res Public Health       Date:  2020-03-17       Impact factor: 3.390

8.  The challenges of living with and managing epidermolysis bullosa: insights from patients and caregivers.

Authors:  Anna L Bruckner; Michael Losow; Jayson Wisk; Nita Patel; Allen Reha; Hjalmar Lagast; Jamie Gault; Jayne Gershkowitz; Brett Kopelan; Michael Hund; Dedee F Murrell
Journal:  Orphanet J Rare Dis       Date:  2020-01-03       Impact factor: 4.123

9.  Evaluation of the toxicity of glucocorticoids in patients with autoimmune blistering disease using the Glucocorticoid Toxicity Index: A cohort study.

Authors:  Yicong Liang; Faith A P Zeng; Tabrez Sheriff; Anna Wilson; Asli Bilgic; Grant Feng; John H Stone; Dedee F Murrell
Journal:  JAAD Int       Date:  2022-01-12
  9 in total

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