Beyond the symptoms: Personalizing giant cell arteritis care through multidimensional patient reported outcome measure

Background: Giant Cell Arteritis (GCA) is the commonest form of systemic vasculitis in people over the age of 50. Published research highlighted the lack of a disease-specific patient reported outcomes (PROMs) for GCA.Objectives: To assess the validity, reliability and responsiveness to change of a...
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Autor*in:	El Miedany, Y [verfasserIn] El Gaafary, M [verfasserIn] Toth, M [verfasserIn] Palmer, D [verfasserIn] Ali, Ayman [verfasserIn] Bahlas, S [verfasserIn] Mahran, S [verfasserIn] Hassan, W [verfasserIn] Abu-zaid, MH [verfasserIn] Saber, S [verfasserIn] Elwakil, W. [verfasserIn]

Format:	E-Artikel
Sprache:	Englisch

Erschienen:	2023

Schlagwörter:	Giant cell arteritis GCA PROMs GCA-PROMs Patient education Patient stratification Benefit/risk ratio

Übergeordnetes Werk:	Enthalten in: Seminars in arthritis and rheumatism - Philadelphia, Pa. : Saunders, 1971, 63
Übergeordnetes Werk:	volume:63

DOI / URN:	10.1016/j.semarthrit.2023.152285

Katalog-ID:	ELV066086728

Internformat


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100	1		\|a El Miedany, Y \|e verfasserin \|0 (orcid)0000-0002-4543-692X \|4 aut
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520			\|a Background: Giant Cell Arteritis (GCA) is the commonest form of systemic vasculitis in people over the age of 50. Published research highlighted the lack of a disease-specific patient reported outcomes (PROMs) for GCA.Objectives: To assess the validity, reliability and responsiveness to change of a devised disease specific patient self-reported outcome measures questionnaire for Giant Cell Arteritis (GCA).Methods: The GCA-PROMs was conceptualized based on frameworks outlined in the OMERACT developed core set of Outcome Measures for Large-Vessel Vasculitis and the guiding principles of the FDA guidance. Initially, cognitive interviews were conducted to identify item pool of questions. Item selection and reduction was achieved based on patients as well as an interdisciplinary group of specialists. Rasch and internal consistency reliability analyses were implemented.Results: A total of 54 GCA patients completed the questionnaire. The GCA-PROMs questionnaire was reliable as demonstrated by a high standardized alpha (0.878–0.983). Content construct assessment of the GCA-PROMs functional disability and QoL revealed significant correlation (p< 0.01) with both HAQ and EQ-5D. Changes in functional disability, QoL showed significant (p< 0.01) variation with diseases activity status in response to therapy.Conclusions: The developed GCA-PROMs questionnaire is a reliable and valid instrument for assessment of GCA patients. A stratified treatment regimen depending on the individual patient's risk factors as well as preferences and associated comorbidities is the best approach to tailored patient management.
650		4	\|a Giant cell arteritis
650		4	\|a GCA
650		4	\|a PROMs
650		4	\|a GCA-PROMs
650		4	\|a Patient education
650		4	\|a Patient stratification
650		4	\|a Benefit/risk ratio
700	1		\|a El Gaafary, M \|e verfasserin \|4 aut
700	1		\|a Toth, M \|e verfasserin \|4 aut
700	1		\|a Palmer, D \|e verfasserin \|4 aut
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700	1		\|a Bahlas, S \|e verfasserin \|4 aut
700	1		\|a Mahran, S \|e verfasserin \|4 aut
700	1		\|a Hassan, W \|e verfasserin \|4 aut
700	1		\|a Abu-zaid, MH \|e verfasserin \|4 aut
700	1		\|a Saber, S \|e verfasserin \|4 aut
700	1		\|a Elwakil, W. \|e verfasserin \|4 aut
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936	b	k	\|a 44.83 \|j Rheumatologie \|j Orthopädie \|q VZ
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publishDate	2023
allfields	10.1016/j.semarthrit.2023.152285 doi (DE-627)ELV066086728 (ELSEVIER)S0049-0172(23)00127-0 DE-627 ger DE-627 rda eng 610 VZ 44.83 bkl El Miedany, Y verfasserin (orcid)0000-0002-4543-692X aut Beyond the symptoms: Personalizing giant cell arteritis care through multidimensional patient reported outcome measure 2023 nicht spezifiziert zzz rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Background: Giant Cell Arteritis (GCA) is the commonest form of systemic vasculitis in people over the age of 50. Published research highlighted the lack of a disease-specific patient reported outcomes (PROMs) for GCA.Objectives: To assess the validity, reliability and responsiveness to change of a devised disease specific patient self-reported outcome measures questionnaire for Giant Cell Arteritis (GCA).Methods: The GCA-PROMs was conceptualized based on frameworks outlined in the OMERACT developed core set of Outcome Measures for Large-Vessel Vasculitis and the guiding principles of the FDA guidance. Initially, cognitive interviews were conducted to identify item pool of questions. Item selection and reduction was achieved based on patients as well as an interdisciplinary group of specialists. Rasch and internal consistency reliability analyses were implemented.Results: A total of 54 GCA patients completed the questionnaire. The GCA-PROMs questionnaire was reliable as demonstrated by a high standardized alpha (0.878–0.983). Content construct assessment of the GCA-PROMs functional disability and QoL revealed significant correlation (p< 0.01) with both HAQ and EQ-5D. Changes in functional disability, QoL showed significant (p< 0.01) variation with diseases activity status in response to therapy.Conclusions: The developed GCA-PROMs questionnaire is a reliable and valid instrument for assessment of GCA patients. A stratified treatment regimen depending on the individual patient's risk factors as well as preferences and associated comorbidities is the best approach to tailored patient management. Giant cell arteritis GCA PROMs GCA-PROMs Patient education Patient stratification Benefit/risk ratio El Gaafary, M verfasserin aut Toth, M verfasserin aut Palmer, D verfasserin aut Ali, Ayman verfasserin aut Bahlas, S verfasserin aut Mahran, S verfasserin aut Hassan, W verfasserin aut Abu-zaid, MH verfasserin aut Saber, S verfasserin aut Elwakil, W. verfasserin aut Enthalten in Seminars in arthritis and rheumatism Philadelphia, Pa. : Saunders, 1971 63 Online-Ressource (DE-627)330079441 (DE-600)2048942-0 (DE-576)097935018 1532-866X nnns volume:63 GBV_USEFLAG_U GBV_ELV SYSFLAG_U SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_187 GBV_ILN_213 GBV_ILN_224 GBV_ILN_230 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2001 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2007 GBV_ILN_2008 GBV_ILN_2009 GBV_ILN_2010 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2026 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2055 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2088 GBV_ILN_2106 GBV_ILN_2110 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2232 GBV_ILN_2336 GBV_ILN_2470 GBV_ILN_2507 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4338 GBV_ILN_4393 GBV_ILN_4700 44.83 Rheumatologie Orthopädie VZ AR 63
spelling	10.1016/j.semarthrit.2023.152285 doi (DE-627)ELV066086728 (ELSEVIER)S0049-0172(23)00127-0 DE-627 ger DE-627 rda eng 610 VZ 44.83 bkl El Miedany, Y verfasserin (orcid)0000-0002-4543-692X aut Beyond the symptoms: Personalizing giant cell arteritis care through multidimensional patient reported outcome measure 2023 nicht spezifiziert zzz rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Background: Giant Cell Arteritis (GCA) is the commonest form of systemic vasculitis in people over the age of 50. Published research highlighted the lack of a disease-specific patient reported outcomes (PROMs) for GCA.Objectives: To assess the validity, reliability and responsiveness to change of a devised disease specific patient self-reported outcome measures questionnaire for Giant Cell Arteritis (GCA).Methods: The GCA-PROMs was conceptualized based on frameworks outlined in the OMERACT developed core set of Outcome Measures for Large-Vessel Vasculitis and the guiding principles of the FDA guidance. Initially, cognitive interviews were conducted to identify item pool of questions. Item selection and reduction was achieved based on patients as well as an interdisciplinary group of specialists. Rasch and internal consistency reliability analyses were implemented.Results: A total of 54 GCA patients completed the questionnaire. The GCA-PROMs questionnaire was reliable as demonstrated by a high standardized alpha (0.878–0.983). Content construct assessment of the GCA-PROMs functional disability and QoL revealed significant correlation (p< 0.01) with both HAQ and EQ-5D. Changes in functional disability, QoL showed significant (p< 0.01) variation with diseases activity status in response to therapy.Conclusions: The developed GCA-PROMs questionnaire is a reliable and valid instrument for assessment of GCA patients. A stratified treatment regimen depending on the individual patient's risk factors as well as preferences and associated comorbidities is the best approach to tailored patient management. Giant cell arteritis GCA PROMs GCA-PROMs Patient education Patient stratification Benefit/risk ratio El Gaafary, M verfasserin aut Toth, M verfasserin aut Palmer, D verfasserin aut Ali, Ayman verfasserin aut Bahlas, S verfasserin aut Mahran, S verfasserin aut Hassan, W verfasserin aut Abu-zaid, MH verfasserin aut Saber, S verfasserin aut Elwakil, W. verfasserin aut Enthalten in Seminars in arthritis and rheumatism Philadelphia, Pa. : Saunders, 1971 63 Online-Ressource (DE-627)330079441 (DE-600)2048942-0 (DE-576)097935018 1532-866X nnns volume:63 GBV_USEFLAG_U GBV_ELV SYSFLAG_U SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_187 GBV_ILN_213 GBV_ILN_224 GBV_ILN_230 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2001 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2007 GBV_ILN_2008 GBV_ILN_2009 GBV_ILN_2010 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2026 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2055 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2088 GBV_ILN_2106 GBV_ILN_2110 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2232 GBV_ILN_2336 GBV_ILN_2470 GBV_ILN_2507 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4338 GBV_ILN_4393 GBV_ILN_4700 44.83 Rheumatologie Orthopädie VZ AR 63
allfields_unstemmed	10.1016/j.semarthrit.2023.152285 doi (DE-627)ELV066086728 (ELSEVIER)S0049-0172(23)00127-0 DE-627 ger DE-627 rda eng 610 VZ 44.83 bkl El Miedany, Y verfasserin (orcid)0000-0002-4543-692X aut Beyond the symptoms: Personalizing giant cell arteritis care through multidimensional patient reported outcome measure 2023 nicht spezifiziert zzz rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Background: Giant Cell Arteritis (GCA) is the commonest form of systemic vasculitis in people over the age of 50. Published research highlighted the lack of a disease-specific patient reported outcomes (PROMs) for GCA.Objectives: To assess the validity, reliability and responsiveness to change of a devised disease specific patient self-reported outcome measures questionnaire for Giant Cell Arteritis (GCA).Methods: The GCA-PROMs was conceptualized based on frameworks outlined in the OMERACT developed core set of Outcome Measures for Large-Vessel Vasculitis and the guiding principles of the FDA guidance. Initially, cognitive interviews were conducted to identify item pool of questions. Item selection and reduction was achieved based on patients as well as an interdisciplinary group of specialists. Rasch and internal consistency reliability analyses were implemented.Results: A total of 54 GCA patients completed the questionnaire. The GCA-PROMs questionnaire was reliable as demonstrated by a high standardized alpha (0.878–0.983). Content construct assessment of the GCA-PROMs functional disability and QoL revealed significant correlation (p< 0.01) with both HAQ and EQ-5D. Changes in functional disability, QoL showed significant (p< 0.01) variation with diseases activity status in response to therapy.Conclusions: The developed GCA-PROMs questionnaire is a reliable and valid instrument for assessment of GCA patients. A stratified treatment regimen depending on the individual patient's risk factors as well as preferences and associated comorbidities is the best approach to tailored patient management. Giant cell arteritis GCA PROMs GCA-PROMs Patient education Patient stratification Benefit/risk ratio El Gaafary, M verfasserin aut Toth, M verfasserin aut Palmer, D verfasserin aut Ali, Ayman verfasserin aut Bahlas, S verfasserin aut Mahran, S verfasserin aut Hassan, W verfasserin aut Abu-zaid, MH verfasserin aut Saber, S verfasserin aut Elwakil, W. verfasserin aut Enthalten in Seminars in arthritis and rheumatism Philadelphia, Pa. : Saunders, 1971 63 Online-Ressource (DE-627)330079441 (DE-600)2048942-0 (DE-576)097935018 1532-866X nnns volume:63 GBV_USEFLAG_U GBV_ELV SYSFLAG_U SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_187 GBV_ILN_213 GBV_ILN_224 GBV_ILN_230 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2001 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2007 GBV_ILN_2008 GBV_ILN_2009 GBV_ILN_2010 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2026 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2055 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2088 GBV_ILN_2106 GBV_ILN_2110 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2232 GBV_ILN_2336 GBV_ILN_2470 GBV_ILN_2507 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4338 GBV_ILN_4393 GBV_ILN_4700 44.83 Rheumatologie Orthopädie VZ AR 63
allfieldsGer	10.1016/j.semarthrit.2023.152285 doi (DE-627)ELV066086728 (ELSEVIER)S0049-0172(23)00127-0 DE-627 ger DE-627 rda eng 610 VZ 44.83 bkl El Miedany, Y verfasserin (orcid)0000-0002-4543-692X aut Beyond the symptoms: Personalizing giant cell arteritis care through multidimensional patient reported outcome measure 2023 nicht spezifiziert zzz rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Background: Giant Cell Arteritis (GCA) is the commonest form of systemic vasculitis in people over the age of 50. Published research highlighted the lack of a disease-specific patient reported outcomes (PROMs) for GCA.Objectives: To assess the validity, reliability and responsiveness to change of a devised disease specific patient self-reported outcome measures questionnaire for Giant Cell Arteritis (GCA).Methods: The GCA-PROMs was conceptualized based on frameworks outlined in the OMERACT developed core set of Outcome Measures for Large-Vessel Vasculitis and the guiding principles of the FDA guidance. Initially, cognitive interviews were conducted to identify item pool of questions. Item selection and reduction was achieved based on patients as well as an interdisciplinary group of specialists. Rasch and internal consistency reliability analyses were implemented.Results: A total of 54 GCA patients completed the questionnaire. The GCA-PROMs questionnaire was reliable as demonstrated by a high standardized alpha (0.878–0.983). Content construct assessment of the GCA-PROMs functional disability and QoL revealed significant correlation (p< 0.01) with both HAQ and EQ-5D. Changes in functional disability, QoL showed significant (p< 0.01) variation with diseases activity status in response to therapy.Conclusions: The developed GCA-PROMs questionnaire is a reliable and valid instrument for assessment of GCA patients. A stratified treatment regimen depending on the individual patient's risk factors as well as preferences and associated comorbidities is the best approach to tailored patient management. Giant cell arteritis GCA PROMs GCA-PROMs Patient education Patient stratification Benefit/risk ratio El Gaafary, M verfasserin aut Toth, M verfasserin aut Palmer, D verfasserin aut Ali, Ayman verfasserin aut Bahlas, S verfasserin aut Mahran, S verfasserin aut Hassan, W verfasserin aut Abu-zaid, MH verfasserin aut Saber, S verfasserin aut Elwakil, W. verfasserin aut Enthalten in Seminars in arthritis and rheumatism Philadelphia, Pa. : Saunders, 1971 63 Online-Ressource (DE-627)330079441 (DE-600)2048942-0 (DE-576)097935018 1532-866X nnns volume:63 GBV_USEFLAG_U GBV_ELV SYSFLAG_U SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_187 GBV_ILN_213 GBV_ILN_224 GBV_ILN_230 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2001 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2007 GBV_ILN_2008 GBV_ILN_2009 GBV_ILN_2010 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2026 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2055 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2088 GBV_ILN_2106 GBV_ILN_2110 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2232 GBV_ILN_2336 GBV_ILN_2470 GBV_ILN_2507 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4338 GBV_ILN_4393 GBV_ILN_4700 44.83 Rheumatologie Orthopädie VZ AR 63
allfieldsSound	10.1016/j.semarthrit.2023.152285 doi (DE-627)ELV066086728 (ELSEVIER)S0049-0172(23)00127-0 DE-627 ger DE-627 rda eng 610 VZ 44.83 bkl El Miedany, Y verfasserin (orcid)0000-0002-4543-692X aut Beyond the symptoms: Personalizing giant cell arteritis care through multidimensional patient reported outcome measure 2023 nicht spezifiziert zzz rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Background: Giant Cell Arteritis (GCA) is the commonest form of systemic vasculitis in people over the age of 50. Published research highlighted the lack of a disease-specific patient reported outcomes (PROMs) for GCA.Objectives: To assess the validity, reliability and responsiveness to change of a devised disease specific patient self-reported outcome measures questionnaire for Giant Cell Arteritis (GCA).Methods: The GCA-PROMs was conceptualized based on frameworks outlined in the OMERACT developed core set of Outcome Measures for Large-Vessel Vasculitis and the guiding principles of the FDA guidance. Initially, cognitive interviews were conducted to identify item pool of questions. Item selection and reduction was achieved based on patients as well as an interdisciplinary group of specialists. Rasch and internal consistency reliability analyses were implemented.Results: A total of 54 GCA patients completed the questionnaire. The GCA-PROMs questionnaire was reliable as demonstrated by a high standardized alpha (0.878–0.983). Content construct assessment of the GCA-PROMs functional disability and QoL revealed significant correlation (p< 0.01) with both HAQ and EQ-5D. Changes in functional disability, QoL showed significant (p< 0.01) variation with diseases activity status in response to therapy.Conclusions: The developed GCA-PROMs questionnaire is a reliable and valid instrument for assessment of GCA patients. A stratified treatment regimen depending on the individual patient's risk factors as well as preferences and associated comorbidities is the best approach to tailored patient management. Giant cell arteritis GCA PROMs GCA-PROMs Patient education Patient stratification Benefit/risk ratio El Gaafary, M verfasserin aut Toth, M verfasserin aut Palmer, D verfasserin aut Ali, Ayman verfasserin aut Bahlas, S verfasserin aut Mahran, S verfasserin aut Hassan, W verfasserin aut Abu-zaid, MH verfasserin aut Saber, S verfasserin aut Elwakil, W. verfasserin aut Enthalten in Seminars in arthritis and rheumatism Philadelphia, Pa. : Saunders, 1971 63 Online-Ressource (DE-627)330079441 (DE-600)2048942-0 (DE-576)097935018 1532-866X nnns volume:63 GBV_USEFLAG_U GBV_ELV SYSFLAG_U SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_187 GBV_ILN_213 GBV_ILN_224 GBV_ILN_230 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2001 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2007 GBV_ILN_2008 GBV_ILN_2009 GBV_ILN_2010 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2026 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2055 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2088 GBV_ILN_2106 GBV_ILN_2110 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2232 GBV_ILN_2336 GBV_ILN_2470 GBV_ILN_2507 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4338 GBV_ILN_4393 GBV_ILN_4700 44.83 Rheumatologie Orthopädie VZ AR 63
language	English
source	Enthalten in Seminars in arthritis and rheumatism 63 volume:63
sourceStr	Enthalten in Seminars in arthritis and rheumatism 63 volume:63
format_phy_str_mv	Article
bklname	Rheumatologie Orthopädie
institution	findex.gbv.de
topic_facet	Giant cell arteritis GCA PROMs GCA-PROMs Patient education Patient stratification Benefit/risk ratio
dewey-raw	610
isfreeaccess_bool	false
container_title	Seminars in arthritis and rheumatism
authorswithroles_txt_mv	El Miedany, Y @@aut@@ El Gaafary, M @@aut@@ Toth, M @@aut@@ Palmer, D @@aut@@ Ali, Ayman @@aut@@ Bahlas, S @@aut@@ Mahran, S @@aut@@ Hassan, W @@aut@@ Abu-zaid, MH @@aut@@ Saber, S @@aut@@ Elwakil, W. @@aut@@
publishDateDaySort_date	2023-01-01T00:00:00Z
hierarchy_top_id	330079441
dewey-sort	3610
id	ELV066086728
language_de	englisch
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Published research highlighted the lack of a disease-specific patient reported outcomes (PROMs) for GCA.Objectives: To assess the validity, reliability and responsiveness to change of a devised disease specific patient self-reported outcome measures questionnaire for Giant Cell Arteritis (GCA).Methods: The GCA-PROMs was conceptualized based on frameworks outlined in the OMERACT developed core set of Outcome Measures for Large-Vessel Vasculitis and the guiding principles of the FDA guidance. Initially, cognitive interviews were conducted to identify item pool of questions. Item selection and reduction was achieved based on patients as well as an interdisciplinary group of specialists. Rasch and internal consistency reliability analyses were implemented.Results: A total of 54 GCA patients completed the questionnaire. The GCA-PROMs questionnaire was reliable as demonstrated by a high standardized alpha (0.878–0.983). Content construct assessment of the GCA-PROMs functional disability and QoL revealed significant correlation (p< 0.01) with both HAQ and EQ-5D. Changes in functional disability, QoL showed significant (p< 0.01) variation with diseases activity status in response to therapy.Conclusions: The developed GCA-PROMs questionnaire is a reliable and valid instrument for assessment of GCA patients. 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spellingShingle	El Miedany, Y ddc 610 bkl 44.83 misc Giant cell arteritis misc GCA misc PROMs misc GCA-PROMs misc Patient education misc Patient stratification misc Benefit/risk ratio Beyond the symptoms: Personalizing giant cell arteritis care through multidimensional patient reported outcome measure
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topic_title	610 VZ 44.83 bkl Beyond the symptoms: Personalizing giant cell arteritis care through multidimensional patient reported outcome measure Giant cell arteritis GCA PROMs GCA-PROMs Patient education Patient stratification Benefit/risk ratio
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title	Beyond the symptoms: Personalizing giant cell arteritis care through multidimensional patient reported outcome measure
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title_full	Beyond the symptoms: Personalizing giant cell arteritis care through multidimensional patient reported outcome measure
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title_sort	beyond the symptoms: personalizing giant cell arteritis care through multidimensional patient reported outcome measure
title_auth	Beyond the symptoms: Personalizing giant cell arteritis care through multidimensional patient reported outcome measure
abstract	Background: Giant Cell Arteritis (GCA) is the commonest form of systemic vasculitis in people over the age of 50. Published research highlighted the lack of a disease-specific patient reported outcomes (PROMs) for GCA.Objectives: To assess the validity, reliability and responsiveness to change of a devised disease specific patient self-reported outcome measures questionnaire for Giant Cell Arteritis (GCA).Methods: The GCA-PROMs was conceptualized based on frameworks outlined in the OMERACT developed core set of Outcome Measures for Large-Vessel Vasculitis and the guiding principles of the FDA guidance. Initially, cognitive interviews were conducted to identify item pool of questions. Item selection and reduction was achieved based on patients as well as an interdisciplinary group of specialists. Rasch and internal consistency reliability analyses were implemented.Results: A total of 54 GCA patients completed the questionnaire. The GCA-PROMs questionnaire was reliable as demonstrated by a high standardized alpha (0.878–0.983). Content construct assessment of the GCA-PROMs functional disability and QoL revealed significant correlation (p< 0.01) with both HAQ and EQ-5D. Changes in functional disability, QoL showed significant (p< 0.01) variation with diseases activity status in response to therapy.Conclusions: The developed GCA-PROMs questionnaire is a reliable and valid instrument for assessment of GCA patients. A stratified treatment regimen depending on the individual patient's risk factors as well as preferences and associated comorbidities is the best approach to tailored patient management.
abstractGer	Background: Giant Cell Arteritis (GCA) is the commonest form of systemic vasculitis in people over the age of 50. Published research highlighted the lack of a disease-specific patient reported outcomes (PROMs) for GCA.Objectives: To assess the validity, reliability and responsiveness to change of a devised disease specific patient self-reported outcome measures questionnaire for Giant Cell Arteritis (GCA).Methods: The GCA-PROMs was conceptualized based on frameworks outlined in the OMERACT developed core set of Outcome Measures for Large-Vessel Vasculitis and the guiding principles of the FDA guidance. Initially, cognitive interviews were conducted to identify item pool of questions. Item selection and reduction was achieved based on patients as well as an interdisciplinary group of specialists. Rasch and internal consistency reliability analyses were implemented.Results: A total of 54 GCA patients completed the questionnaire. The GCA-PROMs questionnaire was reliable as demonstrated by a high standardized alpha (0.878–0.983). Content construct assessment of the GCA-PROMs functional disability and QoL revealed significant correlation (p< 0.01) with both HAQ and EQ-5D. Changes in functional disability, QoL showed significant (p< 0.01) variation with diseases activity status in response to therapy.Conclusions: The developed GCA-PROMs questionnaire is a reliable and valid instrument for assessment of GCA patients. A stratified treatment regimen depending on the individual patient's risk factors as well as preferences and associated comorbidities is the best approach to tailored patient management.
abstract_unstemmed	Background: Giant Cell Arteritis (GCA) is the commonest form of systemic vasculitis in people over the age of 50. Published research highlighted the lack of a disease-specific patient reported outcomes (PROMs) for GCA.Objectives: To assess the validity, reliability and responsiveness to change of a devised disease specific patient self-reported outcome measures questionnaire for Giant Cell Arteritis (GCA).Methods: The GCA-PROMs was conceptualized based on frameworks outlined in the OMERACT developed core set of Outcome Measures for Large-Vessel Vasculitis and the guiding principles of the FDA guidance. Initially, cognitive interviews were conducted to identify item pool of questions. Item selection and reduction was achieved based on patients as well as an interdisciplinary group of specialists. Rasch and internal consistency reliability analyses were implemented.Results: A total of 54 GCA patients completed the questionnaire. The GCA-PROMs questionnaire was reliable as demonstrated by a high standardized alpha (0.878–0.983). Content construct assessment of the GCA-PROMs functional disability and QoL revealed significant correlation (p< 0.01) with both HAQ and EQ-5D. Changes in functional disability, QoL showed significant (p< 0.01) variation with diseases activity status in response to therapy.Conclusions: The developed GCA-PROMs questionnaire is a reliable and valid instrument for assessment of GCA patients. A stratified treatment regimen depending on the individual patient's risk factors as well as preferences and associated comorbidities is the best approach to tailored patient management.
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title_short	Beyond the symptoms: Personalizing giant cell arteritis care through multidimensional patient reported outcome measure
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author2	El Gaafary, M Toth, M Palmer, D Ali, Ayman Bahlas, S Mahran, S Hassan, W Abu-zaid, MH Saber, S Elwakil, W.
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Published research highlighted the lack of a disease-specific patient reported outcomes (PROMs) for GCA.Objectives: To assess the validity, reliability and responsiveness to change of a devised disease specific patient self-reported outcome measures questionnaire for Giant Cell Arteritis (GCA).Methods: The GCA-PROMs was conceptualized based on frameworks outlined in the OMERACT developed core set of Outcome Measures for Large-Vessel Vasculitis and the guiding principles of the FDA guidance. Initially, cognitive interviews were conducted to identify item pool of questions. Item selection and reduction was achieved based on patients as well as an interdisciplinary group of specialists. Rasch and internal consistency reliability analyses were implemented.Results: A total of 54 GCA patients completed the questionnaire. The GCA-PROMs questionnaire was reliable as demonstrated by a high standardized alpha (0.878–0.983). Content construct assessment of the GCA-PROMs functional disability and QoL revealed significant correlation (p< 0.01) with both HAQ and EQ-5D. Changes in functional disability, QoL showed significant (p< 0.01) variation with diseases activity status in response to therapy.Conclusions: The developed GCA-PROMs questionnaire is a reliable and valid instrument for assessment of GCA patients. A stratified treatment regimen depending on the individual patient's risk factors as well as preferences and associated comorbidities is the best approach to tailored patient management.</subfield></datafield><datafield tag="650" ind1=" " ind2="4"><subfield code="a">Giant cell arteritis</subfield></datafield><datafield tag="650" ind1=" " ind2="4"><subfield code="a">GCA</subfield></datafield><datafield tag="650" ind1=" " ind2="4"><subfield code="a">PROMs</subfield></datafield><datafield tag="650" ind1=" " ind2="4"><subfield code="a">GCA-PROMs</subfield></datafield><datafield tag="650" ind1=" " ind2="4"><subfield code="a">Patient education</subfield></datafield><datafield tag="650" ind1=" " ind2="4"><subfield code="a">Patient stratification</subfield></datafield><datafield tag="650" ind1=" " ind2="4"><subfield code="a">Benefit/risk ratio</subfield></datafield><datafield tag="700" ind1="1" ind2=" "><subfield code="a">El Gaafary, M</subfield><subfield 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Beyond the symptoms: Personalizing giant cell arteritis care through multidimensional patient reported outcome measure

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