Disease burden and patient reported outcomes among patients with moderate to severe psoriasis: an ethnography study

Siva Narayanan,1 Victoria Guyatt,2 Alessandra Franceschetti,3 Emily L Hautamaki1 1Ipsos Healthcare, Columbia, MD, USA; 2Ipsos Ethnography Centre of Excellence (ECE), London, UK; 3Ipsos Healthcare, London, UK Objectives: To assess the impact of psoriasis on health-related quality of life (HRQoL).Met...

Descripción completa

Guardado en:

Detalles Bibliográficos
Autores principales:	Narayanan S, Guyatt V, Franceschetti A, Hautamaki EL
Formato:	article
Lenguaje:	EN
Publicado:	Dove Medical Press 2014
Materias:	Dermatology RL1-803
Acceso en línea:	https://doaj.org/article/2ad743d079f74462b8526d21e493c814
Etiquetas:	Agregar Etiqueta Sin Etiquetas, Sea el primero en etiquetar este registro!

id	oai:doaj.org-article:2ad743d079f74462b8526d21e493c814
record_format	dspace
spelling	oai:doaj.org-article:2ad743d079f74462b8526d21e493c8142021-12-02T01:35:16ZDisease burden and patient reported outcomes among patients with moderate to severe psoriasis: an ethnography study2230-326Xhttps://doaj.org/article/2ad743d079f74462b8526d21e493c8142014-12-01T00:00:00Zhttp://www.dovepress.com/disease-burden-and-patient-reported-outcomes-among-patients-with-moder-peer-reviewed-article-PTThttps://doaj.org/toc/2230-326X Siva Narayanan,1 Victoria Guyatt,2 Alessandra Franceschetti,3 Emily L Hautamaki1 1Ipsos Healthcare, Columbia, MD, USA; 2Ipsos Ethnography Centre of Excellence (ECE), London, UK; 3Ipsos Healthcare, London, UK Objectives: To assess the impact of psoriasis on health-related quality of life (HRQoL).Methods: An ethnographic study of patients with moderate to severe psoriasis was conducted in the US, France, Germany, Italy, Spain, UK, Brazil, and Canada to explore patients' views on treatment and the impact of psoriasis on HRQoL. Anthropologists and ethnographers spent a minimum of 5.5 hours with each consented patient and filmed their behaviors in everyday situations. Visual data and notes were analyzed to identify HRQoL-related themes.Results: The study included 50 adult patients. Patients described their appearance with disgust and self-loathing. Frustration was expressed due to a perceived lack of control of their lives. Prior to initiation of biologic treatment, daily rituals absorbed a good part of their day, including applying creams, checking one's appearance, and covering the body. Due to a lack of cultural discourse and patient's difficulty in articulating the impact of psoriasis, partners and family did not know how to react nor did they realize the full extent of the problem, and many patients experienced perceived social discrimination due to psoriasis, leaving them with feelings of isolation. Patients established on biologic treatment noticed a significant physical improvement and regained confidence, but psychosocial impacts, including social isolation, remained.Conclusion: This ethnographic study vividly depicted the unarticulated and emotional impact of psoriasis on the everyday lives of patients and presents an effective method of assessing HRQoL in chronic diseases.Keywords: psoriasis, health-related quality of life, ethnography, patient reported outcomes, conceptual modelNarayanan SGuyatt VFranceschetti AHautamaki ELDove Medical PressarticleDermatologyRL1-803ENPsoriasis: Targets and Therapy, Vol 2015, Iss default, Pp 1-7 (2014)
institution	DOAJ
collection	DOAJ
language	EN
topic	Dermatology RL1-803
spellingShingle	Dermatology RL1-803 Narayanan S Guyatt V Franceschetti A Hautamaki EL Disease burden and patient reported outcomes among patients with moderate to severe psoriasis: an ethnography study
description	Siva Narayanan,1 Victoria Guyatt,2 Alessandra Franceschetti,3 Emily L Hautamaki1 1Ipsos Healthcare, Columbia, MD, USA; 2Ipsos Ethnography Centre of Excellence (ECE), London, UK; 3Ipsos Healthcare, London, UK Objectives: To assess the impact of psoriasis on health-related quality of life (HRQoL).Methods: An ethnographic study of patients with moderate to severe psoriasis was conducted in the US, France, Germany, Italy, Spain, UK, Brazil, and Canada to explore patients' views on treatment and the impact of psoriasis on HRQoL. Anthropologists and ethnographers spent a minimum of 5.5 hours with each consented patient and filmed their behaviors in everyday situations. Visual data and notes were analyzed to identify HRQoL-related themes.Results: The study included 50 adult patients. Patients described their appearance with disgust and self-loathing. Frustration was expressed due to a perceived lack of control of their lives. Prior to initiation of biologic treatment, daily rituals absorbed a good part of their day, including applying creams, checking one's appearance, and covering the body. Due to a lack of cultural discourse and patient's difficulty in articulating the impact of psoriasis, partners and family did not know how to react nor did they realize the full extent of the problem, and many patients experienced perceived social discrimination due to psoriasis, leaving them with feelings of isolation. Patients established on biologic treatment noticed a significant physical improvement and regained confidence, but psychosocial impacts, including social isolation, remained.Conclusion: This ethnographic study vividly depicted the unarticulated and emotional impact of psoriasis on the everyday lives of patients and presents an effective method of assessing HRQoL in chronic diseases.Keywords: psoriasis, health-related quality of life, ethnography, patient reported outcomes, conceptual model
format	article
author	Narayanan S Guyatt V Franceschetti A Hautamaki EL
author_facet	Narayanan S Guyatt V Franceschetti A Hautamaki EL
author_sort	Narayanan S
title	Disease burden and patient reported outcomes among patients with moderate to severe psoriasis: an ethnography study
title_short	Disease burden and patient reported outcomes among patients with moderate to severe psoriasis: an ethnography study
title_full	Disease burden and patient reported outcomes among patients with moderate to severe psoriasis: an ethnography study
title_fullStr	Disease burden and patient reported outcomes among patients with moderate to severe psoriasis: an ethnography study
title_full_unstemmed	Disease burden and patient reported outcomes among patients with moderate to severe psoriasis: an ethnography study
title_sort	disease burden and patient reported outcomes among patients with moderate to severe psoriasis: an ethnography study
publisher	Dove Medical Press
publishDate	2014
url	https://doaj.org/article/2ad743d079f74462b8526d21e493c814
work_keys_str_mv	AT narayanans diseaseburdenandpatientreportedoutcomesamongpatientswithmoderatetoseverepsoriasisanethnographystudy AT guyattv diseaseburdenandpatientreportedoutcomesamongpatientswithmoderatetoseverepsoriasisanethnographystudy AT franceschettia diseaseburdenandpatientreportedoutcomesamongpatientswithmoderatetoseverepsoriasisanethnographystudy AT hautamakiel diseaseburdenandpatientreportedoutcomesamongpatientswithmoderatetoseverepsoriasisanethnographystudy
_version_	1718402946723479552

Disease burden and patient reported outcomes among patients with moderate to severe psoriasis: an ethnography study

Ejemplares similares