2012
DOI: 10.1016/j.jval.2012.08.1579
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Abstract: were evaluated based on US and European PRO/HRQOL guidance criteria. RESULTS: The review identified 8 HRQOL measures used with EB patients: 3 generic (SF-36; EQ-5D, EQ-5DY); 4 dermatology-specific (DLQI, CDLQI, DQOLS, Skindex); and 1 EBspecific (QOLEB). Only the CDLQI and QOLEB were specifically designed for pediatric populations (ages 4-16 and Ն10 years, respectively). The QOLEB was the only instrument for which content was derived from EB patients; 26 patient interviews were conducted, of which 9 were with p… Show more

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“…This structure could be reinforced by a core steering committee to establish and oversee the agreement as recommended by the ISPOR good practices for performance-based risk-sharing arrangements task force ( Chapman et al, 2003 ; Garrison Jr et al, 2013 ). The members of this committee could be the payer, the health technology assessment agency, the manufacturer and the healthcare provider as they are deemed crucial due to their budgetary and/or administrative responsibilities within these agreements ( Menon et al, 2011 ; Ferrario and Kanavos, 2013 ; Garrison Jr et al, 2013 ; Drummond, 2015 ).…”
Section: Resultsmentioning
confidence: 99%
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“…This structure could be reinforced by a core steering committee to establish and oversee the agreement as recommended by the ISPOR good practices for performance-based risk-sharing arrangements task force ( Chapman et al, 2003 ; Garrison Jr et al, 2013 ). The members of this committee could be the payer, the health technology assessment agency, the manufacturer and the healthcare provider as they are deemed crucial due to their budgetary and/or administrative responsibilities within these agreements ( Menon et al, 2011 ; Ferrario and Kanavos, 2013 ; Garrison Jr et al, 2013 ; Drummond, 2015 ).…”
Section: Resultsmentioning
confidence: 99%
“…However, collaboration between different stakeholders may be complicated by the underlying interests of every stakeholder group and their respective incentives ( de Pouvourville, 2006 ; Carlson et al, 2009 ; Puig-Peiró et al, 2011 ; Neumann et al, 2011 ; Brennan and Wilson, 2014 ; Barlas, 2016a ; Carr and Bradshaw, 2016 ; Kiernan, 2016 ; Proach et al, 2016 ; Van De Vijver et al, 2016 ; NEHI, 2017 ; Value in Health, 2017 ; Cole et al, 2019 ; FoCUS, 2019a ; Federici et al, 2019 ; Pace et al, 2019 ; Kannarkat et al, 2020 ). Therefore, several authors recommend performing an analysis of the interests of all stakeholders at all stages of the agreement allowing the declaration of possible conflicts of interests and affiliations before the start of the agreement ( Chapman et al, 2003 ; Raftery, 2010 ; Menon et al, 2011 ; Clopes et al, 2017 ; Gerkens et al, 2017 ; Makady et al, 2019 ). Although payers, developers and providers have several positive incentives to engage in OBAs, different negative incentives and conflicting interests are reported in literature and may be an additional barrier to OBA implementation.…”
Section: Resultsmentioning
confidence: 99%
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