Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study

Introduction On average, patients with axial spondyloarthritis (axSpA) suffer from symptoms up to 13 or more years before diagnosis, contributing to psychological distress and healthcare burden Methods We conducted six semi-structured focus groups with 26 axSpA patients (from 3 rheumatology practice...
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Autor*in:	Dube, Catherine E. [verfasserIn] Lapane, Kate L. [verfasserIn] Ferrucci, Katarina A. [verfasserIn] Beccia, Ariel L. [verfasserIn] Khan, Sara K. [verfasserIn] Yi, Esther [verfasserIn] Kay, Jonathan [verfasserIn] Kuhn, Kristine A. [verfasserIn] Ogdie, Alexis [verfasserIn] Liu, Shao-Hsien [verfasserIn]

Format:	E-Artikel
Sprache:	Englisch

Erschienen:	2021

Schlagwörter:	Axial spondyloarthritis AxSpA Diagnostic delay Symptoms of unknown origin Clinical inertia

Anmerkung:	© The Author(s) 2021

Übergeordnetes Werk:	Enthalten in: Rheumatology and therapy - [s.l.] : Springer Healthcare, 2014, 8(2021), 2 vom: 31. Mai, Seite 1015-1030
Übergeordnetes Werk:	volume:8 ; year:2021 ; number:2 ; day:31 ; month:05 ; pages:1015-1030

Links:	Volltext

DOI / URN:	10.1007/s40744-021-00321-z

Katalog-ID:	SPR04436413X

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520			\|a Introduction On average, patients with axial spondyloarthritis (axSpA) suffer from symptoms up to 13 or more years before diagnosis, contributing to psychological distress and healthcare burden Methods We conducted six semi-structured focus groups with 26 axSpA patients (from 3 rheumatology practices located in the states of Massachusetts, Colorado, and Pensylvania, USA) exploring early disease and diagnostic experiences. Verbatim transcripts were coded using a start list with emerging thematic codes added. A qualitative thematic analysis was performed Results Many participants described meandering and frustrating diagnostic journeys. Participants reported that intermittent axSpA symptoms and idiopathic pain contributed to physician confusion and delay in patients seeking care. Participants were sometimes perceived as somaticizing, drug-seeking, or “crazy.” Diagnostic delay led to frustration and mental suffering. Doctors “giving up” was considered profoundly negative. Stories of symptoms fell into five areas: (1) pain; (2) stiffness; (3) impact on sleep; (4) impact on daily activities; and (5) changes with weather. Self-advocacy and family advocacy were considered essential. Participants suggested wider use of HLA-B27 testing and development of a definitive diagnostic test Conclusion Most participants described significant suffering prior to axSpA diagnosis which could have been avoided with earlier intervention. Further research on the early disease experiences of axSpA patients is needed.
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allfields	10.1007/s40744-021-00321-z doi (DE-627)SPR04436413X (SPR)s40744-021-00321-z-e DE-627 ger DE-627 rakwb eng 610 ASE Dube, Catherine E. verfasserin aut Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study 2021 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s) 2021 Introduction On average, patients with axial spondyloarthritis (axSpA) suffer from symptoms up to 13 or more years before diagnosis, contributing to psychological distress and healthcare burden Methods We conducted six semi-structured focus groups with 26 axSpA patients (from 3 rheumatology practices located in the states of Massachusetts, Colorado, and Pensylvania, USA) exploring early disease and diagnostic experiences. Verbatim transcripts were coded using a start list with emerging thematic codes added. A qualitative thematic analysis was performed Results Many participants described meandering and frustrating diagnostic journeys. Participants reported that intermittent axSpA symptoms and idiopathic pain contributed to physician confusion and delay in patients seeking care. Participants were sometimes perceived as somaticizing, drug-seeking, or “crazy.” Diagnostic delay led to frustration and mental suffering. Doctors “giving up” was considered profoundly negative. Stories of symptoms fell into five areas: (1) pain; (2) stiffness; (3) impact on sleep; (4) impact on daily activities; and (5) changes with weather. Self-advocacy and family advocacy were considered essential. Participants suggested wider use of HLA-B27 testing and development of a definitive diagnostic test Conclusion Most participants described significant suffering prior to axSpA diagnosis which could have been avoided with earlier intervention. Further research on the early disease experiences of axSpA patients is needed. Axial spondyloarthritis (dpeaa)DE-He213 AxSpA (dpeaa)DE-He213 Diagnostic delay (dpeaa)DE-He213 Symptoms of unknown origin (dpeaa)DE-He213 Clinical inertia (dpeaa)DE-He213 Lapane, Kate L. verfasserin aut Ferrucci, Katarina A. verfasserin aut Beccia, Ariel L. verfasserin aut Khan, Sara K. verfasserin aut Yi, Esther verfasserin aut Kay, Jonathan verfasserin aut Kuhn, Kristine A. verfasserin aut Ogdie, Alexis verfasserin aut Liu, Shao-Hsien verfasserin aut Enthalten in Rheumatology and therapy [s.l.] : Springer Healthcare, 2014 8(2021), 2 vom: 31. Mai, Seite 1015-1030 (DE-627)795566832 (DE-600)2783278-8 2198-6584 nnns volume:8 year:2021 number:2 day:31 month:05 pages:1015-1030 https://dx.doi.org/10.1007/s40744-021-00321-z kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2005 GBV_ILN_2009 GBV_ILN_2014 GBV_ILN_2055 GBV_ILN_2111 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 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_4338 GBV_ILN_4367 GBV_ILN_4700 AR 8 2021 2 31 05 1015-1030
spelling	10.1007/s40744-021-00321-z doi (DE-627)SPR04436413X (SPR)s40744-021-00321-z-e DE-627 ger DE-627 rakwb eng 610 ASE Dube, Catherine E. verfasserin aut Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study 2021 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s) 2021 Introduction On average, patients with axial spondyloarthritis (axSpA) suffer from symptoms up to 13 or more years before diagnosis, contributing to psychological distress and healthcare burden Methods We conducted six semi-structured focus groups with 26 axSpA patients (from 3 rheumatology practices located in the states of Massachusetts, Colorado, and Pensylvania, USA) exploring early disease and diagnostic experiences. Verbatim transcripts were coded using a start list with emerging thematic codes added. A qualitative thematic analysis was performed Results Many participants described meandering and frustrating diagnostic journeys. Participants reported that intermittent axSpA symptoms and idiopathic pain contributed to physician confusion and delay in patients seeking care. Participants were sometimes perceived as somaticizing, drug-seeking, or “crazy.” Diagnostic delay led to frustration and mental suffering. Doctors “giving up” was considered profoundly negative. Stories of symptoms fell into five areas: (1) pain; (2) stiffness; (3) impact on sleep; (4) impact on daily activities; and (5) changes with weather. Self-advocacy and family advocacy were considered essential. Participants suggested wider use of HLA-B27 testing and development of a definitive diagnostic test Conclusion Most participants described significant suffering prior to axSpA diagnosis which could have been avoided with earlier intervention. Further research on the early disease experiences of axSpA patients is needed. Axial spondyloarthritis (dpeaa)DE-He213 AxSpA (dpeaa)DE-He213 Diagnostic delay (dpeaa)DE-He213 Symptoms of unknown origin (dpeaa)DE-He213 Clinical inertia (dpeaa)DE-He213 Lapane, Kate L. verfasserin aut Ferrucci, Katarina A. verfasserin aut Beccia, Ariel L. verfasserin aut Khan, Sara K. verfasserin aut Yi, Esther verfasserin aut Kay, Jonathan verfasserin aut Kuhn, Kristine A. verfasserin aut Ogdie, Alexis verfasserin aut Liu, Shao-Hsien verfasserin aut Enthalten in Rheumatology and therapy [s.l.] : Springer Healthcare, 2014 8(2021), 2 vom: 31. Mai, Seite 1015-1030 (DE-627)795566832 (DE-600)2783278-8 2198-6584 nnns volume:8 year:2021 number:2 day:31 month:05 pages:1015-1030 https://dx.doi.org/10.1007/s40744-021-00321-z kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2005 GBV_ILN_2009 GBV_ILN_2014 GBV_ILN_2055 GBV_ILN_2111 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 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_4338 GBV_ILN_4367 GBV_ILN_4700 AR 8 2021 2 31 05 1015-1030
allfields_unstemmed	10.1007/s40744-021-00321-z doi (DE-627)SPR04436413X (SPR)s40744-021-00321-z-e DE-627 ger DE-627 rakwb eng 610 ASE Dube, Catherine E. verfasserin aut Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study 2021 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s) 2021 Introduction On average, patients with axial spondyloarthritis (axSpA) suffer from symptoms up to 13 or more years before diagnosis, contributing to psychological distress and healthcare burden Methods We conducted six semi-structured focus groups with 26 axSpA patients (from 3 rheumatology practices located in the states of Massachusetts, Colorado, and Pensylvania, USA) exploring early disease and diagnostic experiences. Verbatim transcripts were coded using a start list with emerging thematic codes added. A qualitative thematic analysis was performed Results Many participants described meandering and frustrating diagnostic journeys. Participants reported that intermittent axSpA symptoms and idiopathic pain contributed to physician confusion and delay in patients seeking care. Participants were sometimes perceived as somaticizing, drug-seeking, or “crazy.” Diagnostic delay led to frustration and mental suffering. Doctors “giving up” was considered profoundly negative. Stories of symptoms fell into five areas: (1) pain; (2) stiffness; (3) impact on sleep; (4) impact on daily activities; and (5) changes with weather. Self-advocacy and family advocacy were considered essential. Participants suggested wider use of HLA-B27 testing and development of a definitive diagnostic test Conclusion Most participants described significant suffering prior to axSpA diagnosis which could have been avoided with earlier intervention. Further research on the early disease experiences of axSpA patients is needed. Axial spondyloarthritis (dpeaa)DE-He213 AxSpA (dpeaa)DE-He213 Diagnostic delay (dpeaa)DE-He213 Symptoms of unknown origin (dpeaa)DE-He213 Clinical inertia (dpeaa)DE-He213 Lapane, Kate L. verfasserin aut Ferrucci, Katarina A. verfasserin aut Beccia, Ariel L. verfasserin aut Khan, Sara K. verfasserin aut Yi, Esther verfasserin aut Kay, Jonathan verfasserin aut Kuhn, Kristine A. verfasserin aut Ogdie, Alexis verfasserin aut Liu, Shao-Hsien verfasserin aut Enthalten in Rheumatology and therapy [s.l.] : Springer Healthcare, 2014 8(2021), 2 vom: 31. Mai, Seite 1015-1030 (DE-627)795566832 (DE-600)2783278-8 2198-6584 nnns volume:8 year:2021 number:2 day:31 month:05 pages:1015-1030 https://dx.doi.org/10.1007/s40744-021-00321-z kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2005 GBV_ILN_2009 GBV_ILN_2014 GBV_ILN_2055 GBV_ILN_2111 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 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_4338 GBV_ILN_4367 GBV_ILN_4700 AR 8 2021 2 31 05 1015-1030
allfieldsGer	10.1007/s40744-021-00321-z doi (DE-627)SPR04436413X (SPR)s40744-021-00321-z-e DE-627 ger DE-627 rakwb eng 610 ASE Dube, Catherine E. verfasserin aut Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study 2021 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s) 2021 Introduction On average, patients with axial spondyloarthritis (axSpA) suffer from symptoms up to 13 or more years before diagnosis, contributing to psychological distress and healthcare burden Methods We conducted six semi-structured focus groups with 26 axSpA patients (from 3 rheumatology practices located in the states of Massachusetts, Colorado, and Pensylvania, USA) exploring early disease and diagnostic experiences. Verbatim transcripts were coded using a start list with emerging thematic codes added. A qualitative thematic analysis was performed Results Many participants described meandering and frustrating diagnostic journeys. Participants reported that intermittent axSpA symptoms and idiopathic pain contributed to physician confusion and delay in patients seeking care. Participants were sometimes perceived as somaticizing, drug-seeking, or “crazy.” Diagnostic delay led to frustration and mental suffering. Doctors “giving up” was considered profoundly negative. Stories of symptoms fell into five areas: (1) pain; (2) stiffness; (3) impact on sleep; (4) impact on daily activities; and (5) changes with weather. Self-advocacy and family advocacy were considered essential. Participants suggested wider use of HLA-B27 testing and development of a definitive diagnostic test Conclusion Most participants described significant suffering prior to axSpA diagnosis which could have been avoided with earlier intervention. Further research on the early disease experiences of axSpA patients is needed. Axial spondyloarthritis (dpeaa)DE-He213 AxSpA (dpeaa)DE-He213 Diagnostic delay (dpeaa)DE-He213 Symptoms of unknown origin (dpeaa)DE-He213 Clinical inertia (dpeaa)DE-He213 Lapane, Kate L. verfasserin aut Ferrucci, Katarina A. verfasserin aut Beccia, Ariel L. verfasserin aut Khan, Sara K. verfasserin aut Yi, Esther verfasserin aut Kay, Jonathan verfasserin aut Kuhn, Kristine A. verfasserin aut Ogdie, Alexis verfasserin aut Liu, Shao-Hsien verfasserin aut Enthalten in Rheumatology and therapy [s.l.] : Springer Healthcare, 2014 8(2021), 2 vom: 31. Mai, Seite 1015-1030 (DE-627)795566832 (DE-600)2783278-8 2198-6584 nnns volume:8 year:2021 number:2 day:31 month:05 pages:1015-1030 https://dx.doi.org/10.1007/s40744-021-00321-z kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2005 GBV_ILN_2009 GBV_ILN_2014 GBV_ILN_2055 GBV_ILN_2111 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 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_4338 GBV_ILN_4367 GBV_ILN_4700 AR 8 2021 2 31 05 1015-1030
allfieldsSound	10.1007/s40744-021-00321-z doi (DE-627)SPR04436413X (SPR)s40744-021-00321-z-e DE-627 ger DE-627 rakwb eng 610 ASE Dube, Catherine E. verfasserin aut Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study 2021 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier © The Author(s) 2021 Introduction On average, patients with axial spondyloarthritis (axSpA) suffer from symptoms up to 13 or more years before diagnosis, contributing to psychological distress and healthcare burden Methods We conducted six semi-structured focus groups with 26 axSpA patients (from 3 rheumatology practices located in the states of Massachusetts, Colorado, and Pensylvania, USA) exploring early disease and diagnostic experiences. Verbatim transcripts were coded using a start list with emerging thematic codes added. A qualitative thematic analysis was performed Results Many participants described meandering and frustrating diagnostic journeys. Participants reported that intermittent axSpA symptoms and idiopathic pain contributed to physician confusion and delay in patients seeking care. Participants were sometimes perceived as somaticizing, drug-seeking, or “crazy.” Diagnostic delay led to frustration and mental suffering. Doctors “giving up” was considered profoundly negative. Stories of symptoms fell into five areas: (1) pain; (2) stiffness; (3) impact on sleep; (4) impact on daily activities; and (5) changes with weather. Self-advocacy and family advocacy were considered essential. Participants suggested wider use of HLA-B27 testing and development of a definitive diagnostic test Conclusion Most participants described significant suffering prior to axSpA diagnosis which could have been avoided with earlier intervention. Further research on the early disease experiences of axSpA patients is needed. Axial spondyloarthritis (dpeaa)DE-He213 AxSpA (dpeaa)DE-He213 Diagnostic delay (dpeaa)DE-He213 Symptoms of unknown origin (dpeaa)DE-He213 Clinical inertia (dpeaa)DE-He213 Lapane, Kate L. verfasserin aut Ferrucci, Katarina A. verfasserin aut Beccia, Ariel L. verfasserin aut Khan, Sara K. verfasserin aut Yi, Esther verfasserin aut Kay, Jonathan verfasserin aut Kuhn, Kristine A. verfasserin aut Ogdie, Alexis verfasserin aut Liu, Shao-Hsien verfasserin aut Enthalten in Rheumatology and therapy [s.l.] : Springer Healthcare, 2014 8(2021), 2 vom: 31. Mai, Seite 1015-1030 (DE-627)795566832 (DE-600)2783278-8 2198-6584 nnns volume:8 year:2021 number:2 day:31 month:05 pages:1015-1030 https://dx.doi.org/10.1007/s40744-021-00321-z kostenfrei Volltext GBV_USEFLAG_A SYSFLAG_A GBV_SPRINGER SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2005 GBV_ILN_2009 GBV_ILN_2014 GBV_ILN_2055 GBV_ILN_2111 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 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_4338 GBV_ILN_4367 GBV_ILN_4700 AR 8 2021 2 31 05 1015-1030
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author	Dube, Catherine E.
spellingShingle	Dube, Catherine E. ddc 610 misc Axial spondyloarthritis misc AxSpA misc Diagnostic delay misc Symptoms of unknown origin misc Clinical inertia Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study
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topic_title	610 ASE Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study Axial spondyloarthritis (dpeaa)DE-He213 AxSpA (dpeaa)DE-He213 Diagnostic delay (dpeaa)DE-He213 Symptoms of unknown origin (dpeaa)DE-He213 Clinical inertia (dpeaa)DE-He213
topic	ddc 610 misc Axial spondyloarthritis misc AxSpA misc Diagnostic delay misc Symptoms of unknown origin misc Clinical inertia
topic_unstemmed	ddc 610 misc Axial spondyloarthritis misc AxSpA misc Diagnostic delay misc Symptoms of unknown origin misc Clinical inertia
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title	Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study
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title_full	Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study
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title_sort	personal experiences with diagnostic delay among axial spondyloarthritis patients: a qualitative study
title_auth	Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study
abstract	Introduction On average, patients with axial spondyloarthritis (axSpA) suffer from symptoms up to 13 or more years before diagnosis, contributing to psychological distress and healthcare burden Methods We conducted six semi-structured focus groups with 26 axSpA patients (from 3 rheumatology practices located in the states of Massachusetts, Colorado, and Pensylvania, USA) exploring early disease and diagnostic experiences. Verbatim transcripts were coded using a start list with emerging thematic codes added. A qualitative thematic analysis was performed Results Many participants described meandering and frustrating diagnostic journeys. Participants reported that intermittent axSpA symptoms and idiopathic pain contributed to physician confusion and delay in patients seeking care. Participants were sometimes perceived as somaticizing, drug-seeking, or “crazy.” Diagnostic delay led to frustration and mental suffering. Doctors “giving up” was considered profoundly negative. Stories of symptoms fell into five areas: (1) pain; (2) stiffness; (3) impact on sleep; (4) impact on daily activities; and (5) changes with weather. Self-advocacy and family advocacy were considered essential. Participants suggested wider use of HLA-B27 testing and development of a definitive diagnostic test Conclusion Most participants described significant suffering prior to axSpA diagnosis which could have been avoided with earlier intervention. Further research on the early disease experiences of axSpA patients is needed. © The Author(s) 2021
abstractGer	Introduction On average, patients with axial spondyloarthritis (axSpA) suffer from symptoms up to 13 or more years before diagnosis, contributing to psychological distress and healthcare burden Methods We conducted six semi-structured focus groups with 26 axSpA patients (from 3 rheumatology practices located in the states of Massachusetts, Colorado, and Pensylvania, USA) exploring early disease and diagnostic experiences. Verbatim transcripts were coded using a start list with emerging thematic codes added. A qualitative thematic analysis was performed Results Many participants described meandering and frustrating diagnostic journeys. Participants reported that intermittent axSpA symptoms and idiopathic pain contributed to physician confusion and delay in patients seeking care. Participants were sometimes perceived as somaticizing, drug-seeking, or “crazy.” Diagnostic delay led to frustration and mental suffering. Doctors “giving up” was considered profoundly negative. Stories of symptoms fell into five areas: (1) pain; (2) stiffness; (3) impact on sleep; (4) impact on daily activities; and (5) changes with weather. Self-advocacy and family advocacy were considered essential. Participants suggested wider use of HLA-B27 testing and development of a definitive diagnostic test Conclusion Most participants described significant suffering prior to axSpA diagnosis which could have been avoided with earlier intervention. Further research on the early disease experiences of axSpA patients is needed. © The Author(s) 2021
abstract_unstemmed	Introduction On average, patients with axial spondyloarthritis (axSpA) suffer from symptoms up to 13 or more years before diagnosis, contributing to psychological distress and healthcare burden Methods We conducted six semi-structured focus groups with 26 axSpA patients (from 3 rheumatology practices located in the states of Massachusetts, Colorado, and Pensylvania, USA) exploring early disease and diagnostic experiences. Verbatim transcripts were coded using a start list with emerging thematic codes added. A qualitative thematic analysis was performed Results Many participants described meandering and frustrating diagnostic journeys. Participants reported that intermittent axSpA symptoms and idiopathic pain contributed to physician confusion and delay in patients seeking care. Participants were sometimes perceived as somaticizing, drug-seeking, or “crazy.” Diagnostic delay led to frustration and mental suffering. Doctors “giving up” was considered profoundly negative. Stories of symptoms fell into five areas: (1) pain; (2) stiffness; (3) impact on sleep; (4) impact on daily activities; and (5) changes with weather. Self-advocacy and family advocacy were considered essential. Participants suggested wider use of HLA-B27 testing and development of a definitive diagnostic test Conclusion Most participants described significant suffering prior to axSpA diagnosis which could have been avoided with earlier intervention. Further research on the early disease experiences of axSpA patients is needed. © The Author(s) 2021
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title_short	Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study
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author2	Lapane, Kate L. Ferrucci, Katarina A. Beccia, Ariel L. Khan, Sara K. Yi, Esther Kay, Jonathan Kuhn, Kristine A. Ogdie, Alexis Liu, Shao-Hsien
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Verbatim transcripts were coded using a start list with emerging thematic codes added. A qualitative thematic analysis was performed Results Many participants described meandering and frustrating diagnostic journeys. Participants reported that intermittent axSpA symptoms and idiopathic pain contributed to physician confusion and delay in patients seeking care. Participants were sometimes perceived as somaticizing, drug-seeking, or “crazy.” Diagnostic delay led to frustration and mental suffering. Doctors “giving up” was considered profoundly negative. Stories of symptoms fell into five areas: (1) pain; (2) stiffness; (3) impact on sleep; (4) impact on daily activities; and (5) changes with weather. Self-advocacy and family advocacy were considered essential. Participants suggested wider use of HLA-B27 testing and development of a definitive diagnostic test Conclusion Most participants described significant suffering prior to axSpA diagnosis which could have been avoided with earlier intervention. 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Personal Experiences with Diagnostic Delay Among Axial Spondyloarthritis Patients: A Qualitative Study

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