Quality of life measurements in epidermolysis bullosa: tools for clinical research and patient care

Dermatologic Clinics
John W Frew, Dedee F Murrell

Abstract

Quality of life (QOL) evaluation in epidermolysis bullosa (EB) has important applications in clinical management, patient advocacy, clinical research, and the development of new treatments. Several new quantitative and qualitative QOL measurement tools were developed recently, providing insight into the impact EB has on individuals and their family members. Selection of the most appropriate QOL tool for patients who have EB depends on not only the type of information required but also the general or specific cohort being examined. EB-specific quantitative tools possess the highest level of content validity and statistical accuracy. However, generic dermatologic tools may also be appropriate in some circumstances. Overall, QOL evaluation in EB is still a developing area of research that may help improve patient management and assess emerging treatment modalities for their efficacy in improving the QOL of patients with EB.

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Citations

Oct 1, 2013·Journal of the American Academy of Dermatology·Supriya S VenugopalDedee F Murrell
Jan 31, 2012·Dermatologic Clinics·Deshan F SebaratnamDédée F Murrell
Dec 29, 2015·The British Journal of Dermatology·D F Murrell
Aug 19, 2015·The British Journal of Dermatology·H DufresneC Bodemer
Apr 25, 2016·The European Journal of Health Economics : HEPAC : Health Economics in Prevention and Care·Aris AngelisUNKNOWN BURQOL-RD Research Network
May 8, 2010·Dermatologic Clinics·Dédée F Murrell
Feb 24, 2011·Qualitative Health Research·Emma DuresNichola Rumsey
Feb 6, 2016·Annals of Dermatology·In Kyung JeonSoo-Chan Kim
Nov 24, 2018·The British Journal of Psychiatry : the Journal of Mental Science·Sanjib SahaJan Sundquist
Jun 16, 2010·Expert Review of Pharmacoeconomics & Outcomes Research·Calogero Pagliarello, Stefano Tabolli
Nov 25, 2014·Scandinavian Journal of Medicine & Science in Sports·S MortonP Malliaras
Mar 23, 2020·Journal of the American Academy of Dermatology·Victor A EngJean Y Tang
Oct 6, 2020·International Journal of Women's Dermatology·Amir TeimourpourCheyda Chams-Davatchi
Jun 7, 2018·International Journal of Women's Dermatology·Swaranjali V Jain, Dedee F Murrell

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