FRI0499 A multinational qualitative study in giant cell arteritis: patient perceptions of diagnosis, treatment, impact on health-related quality of life and contextual factors

J.C. Robson, C. Almeida, J. Dawson, A. Bromhead, S.L. Mackie, C. Hill, E. Hoon, C. Davis, R. Greenwood, R. Luqmani, B. Dasgupta, C. Guly, J.D. Pauling, R. Watts, E. Dures

Research output: Contribution to journalArticle

Abstract

Background Giant cell arteritis (GCA) is the commonest form of systemic vasculitis caused by inflammation of the blood vessels around the head and neck, with the highest incidence in women aged 70textendash79 years (7.4 per 10 000 person-years). Patients present with headache, jaw claudication and polymyalgia rheumatica with visual loss in 20 Treatment is with high dose glucocorticoids.Objectives Identify and define the range of patient experiences in relation to GCA, and effects on health related quality of life in patients from the United Kingdom and Australia.Methods Semi-structured qualitative interviews with patients from the UK and Australia explored health-related quality of life and patient perspectives on the experience of GCA. Interviews were recorded, transcribed and analysed. Patients were purposively sampled to include both genders, a range of disease durations and organ involvement (visual loss and large vessel involvement). Data were analysed with inductive thematic analysis and managed using NVivo 10. The sample size was determined by the point at which no new substantive themes emerged.Results Thirty-one interviews were conducted. Demographics and disease features shown in table 1. Individual sub-codes were identified then grouped into overarching themes: textquotedblleftAnxieties around getting a diagnosis of GCAtextquotedblright, textquotedblleftDescription of symptoms related to GCA and its treatmenttextquotedblright, textquotedblleftLack of bodily strength, stability and stamina; difficulties with completing daily taskstextquotedblright, textquotedblleftDifficulties with participating in social activities, work and caring rolestextquotedblright, textquotedblleftNot feeling normal and impact on general perception of healthtextquotedblright, textquotedblleftAnxiety and fear of the futuretextquotedblright. Contextual factors impacted on how patients experienced GCA including textquotedblleftResponse to treatment and adverse effectstextquotedblright, textquotedblleftReceiving support from family, friends and health care workerstextquotedblright, textquotedblleftAdopting successful self-management techniques, e.g. keeping fit and activetextquotedblright and textquotedblleftPresence of pre-existing co-morbidities and development of secondary conditions e.g. cardiovascular disease, osteoporosis or diabetestextquotedblright.View this table:Conclusions Patients with GCA have described a range of themes of interest in relation to their disease. These data could be used as the basis of developing a patient reported measure of outcome in GCA.Disclosure of Interest None declared
Original languageEnglish
Pages (from-to)777-777
Number of pages1
JournalAnnals of the Rheumatic Diseases
Volume77
Issue numberSuppl 2
DOIs
Publication statusE-pub ahead of print - 12 Jun 2018

Cite this

FRI0499 A multinational qualitative study in giant cell arteritis: patient perceptions of diagnosis, treatment, impact on health-related quality of life and contextual factors. / Robson, J.C.; Almeida, C.; Dawson, J.; Bromhead, A.; Mackie, S.L.; Hill, C.; Hoon, E.; Davis, C.; Greenwood, R.; Luqmani, R.; Dasgupta, B.; Guly, C.; Pauling, J.D.; Watts, R.; Dures, E.

In: Annals of the Rheumatic Diseases, Vol. 77, No. Suppl 2, 12.06.2018, p. 777-777.

Research output: Contribution to journalArticle

Robson, JC, Almeida, C, Dawson, J, Bromhead, A, Mackie, SL, Hill, C, Hoon, E, Davis, C, Greenwood, R, Luqmani, R, Dasgupta, B, Guly, C, Pauling, JD, Watts, R & Dures, E 2018, 'FRI0499 A multinational qualitative study in giant cell arteritis: patient perceptions of diagnosis, treatment, impact on health-related quality of life and contextual factors', Annals of the Rheumatic Diseases, vol. 77, no. Suppl 2, pp. 777-777. https://doi.org/10.1136/annrheumdis-2018-eular.4017
Robson, J.C. ; Almeida, C. ; Dawson, J. ; Bromhead, A. ; Mackie, S.L. ; Hill, C. ; Hoon, E. ; Davis, C. ; Greenwood, R. ; Luqmani, R. ; Dasgupta, B. ; Guly, C. ; Pauling, J.D. ; Watts, R. ; Dures, E. / FRI0499 A multinational qualitative study in giant cell arteritis: patient perceptions of diagnosis, treatment, impact on health-related quality of life and contextual factors. In: Annals of the Rheumatic Diseases. 2018 ; Vol. 77, No. Suppl 2. pp. 777-777.
@article{6fc24c20da1e417cab2f70e2eac76f80,
title = "FRI0499 A multinational qualitative study in giant cell arteritis: patient perceptions of diagnosis, treatment, impact on health-related quality of life and contextual factors",
abstract = "Background Giant cell arteritis (GCA) is the commonest form of systemic vasculitis caused by inflammation of the blood vessels around the head and neck, with the highest incidence in women aged 70textendash79 years (7.4 per 10 000 person-years). Patients present with headache, jaw claudication and polymyalgia rheumatica with visual loss in 20 Treatment is with high dose glucocorticoids.Objectives Identify and define the range of patient experiences in relation to GCA, and effects on health related quality of life in patients from the United Kingdom and Australia.Methods Semi-structured qualitative interviews with patients from the UK and Australia explored health-related quality of life and patient perspectives on the experience of GCA. Interviews were recorded, transcribed and analysed. Patients were purposively sampled to include both genders, a range of disease durations and organ involvement (visual loss and large vessel involvement). Data were analysed with inductive thematic analysis and managed using NVivo 10. The sample size was determined by the point at which no new substantive themes emerged.Results Thirty-one interviews were conducted. Demographics and disease features shown in table 1. Individual sub-codes were identified then grouped into overarching themes: textquotedblleftAnxieties around getting a diagnosis of GCAtextquotedblright, textquotedblleftDescription of symptoms related to GCA and its treatmenttextquotedblright, textquotedblleftLack of bodily strength, stability and stamina; difficulties with completing daily taskstextquotedblright, textquotedblleftDifficulties with participating in social activities, work and caring rolestextquotedblright, textquotedblleftNot feeling normal and impact on general perception of healthtextquotedblright, textquotedblleftAnxiety and fear of the futuretextquotedblright. Contextual factors impacted on how patients experienced GCA including textquotedblleftResponse to treatment and adverse effectstextquotedblright, textquotedblleftReceiving support from family, friends and health care workerstextquotedblright, textquotedblleftAdopting successful self-management techniques, e.g. keeping fit and activetextquotedblright and textquotedblleftPresence of pre-existing co-morbidities and development of secondary conditions e.g. cardiovascular disease, osteoporosis or diabetestextquotedblright.View this table:Conclusions Patients with GCA have described a range of themes of interest in relation to their disease. These data could be used as the basis of developing a patient reported measure of outcome in GCA.Disclosure of Interest None declared",
author = "J.C. Robson and C. Almeida and J. Dawson and A. Bromhead and S.L. Mackie and C. Hill and E. Hoon and C. Davis and R. Greenwood and R. Luqmani and B. Dasgupta and C. Guly and J.D. Pauling and R. Watts and E. Dures",
year = "2018",
month = "6",
day = "12",
doi = "10.1136/annrheumdis-2018-eular.4017",
language = "English",
volume = "77",
pages = "777--777",
journal = "Annals of the Rheumatic Diseases",
issn = "0003-4967",
publisher = "BMJ Publishing Group Ltd",
number = "Suppl 2",

}

TY - JOUR

T1 - FRI0499 A multinational qualitative study in giant cell arteritis: patient perceptions of diagnosis, treatment, impact on health-related quality of life and contextual factors

AU - Robson, J.C.

AU - Almeida, C.

AU - Dawson, J.

AU - Bromhead, A.

AU - Mackie, S.L.

AU - Hill, C.

AU - Hoon, E.

AU - Davis, C.

AU - Greenwood, R.

AU - Luqmani, R.

AU - Dasgupta, B.

AU - Guly, C.

AU - Pauling, J.D.

AU - Watts, R.

AU - Dures, E.

PY - 2018/6/12

Y1 - 2018/6/12

N2 - Background Giant cell arteritis (GCA) is the commonest form of systemic vasculitis caused by inflammation of the blood vessels around the head and neck, with the highest incidence in women aged 70textendash79 years (7.4 per 10 000 person-years). Patients present with headache, jaw claudication and polymyalgia rheumatica with visual loss in 20 Treatment is with high dose glucocorticoids.Objectives Identify and define the range of patient experiences in relation to GCA, and effects on health related quality of life in patients from the United Kingdom and Australia.Methods Semi-structured qualitative interviews with patients from the UK and Australia explored health-related quality of life and patient perspectives on the experience of GCA. Interviews were recorded, transcribed and analysed. Patients were purposively sampled to include both genders, a range of disease durations and organ involvement (visual loss and large vessel involvement). Data were analysed with inductive thematic analysis and managed using NVivo 10. The sample size was determined by the point at which no new substantive themes emerged.Results Thirty-one interviews were conducted. Demographics and disease features shown in table 1. Individual sub-codes were identified then grouped into overarching themes: textquotedblleftAnxieties around getting a diagnosis of GCAtextquotedblright, textquotedblleftDescription of symptoms related to GCA and its treatmenttextquotedblright, textquotedblleftLack of bodily strength, stability and stamina; difficulties with completing daily taskstextquotedblright, textquotedblleftDifficulties with participating in social activities, work and caring rolestextquotedblright, textquotedblleftNot feeling normal and impact on general perception of healthtextquotedblright, textquotedblleftAnxiety and fear of the futuretextquotedblright. Contextual factors impacted on how patients experienced GCA including textquotedblleftResponse to treatment and adverse effectstextquotedblright, textquotedblleftReceiving support from family, friends and health care workerstextquotedblright, textquotedblleftAdopting successful self-management techniques, e.g. keeping fit and activetextquotedblright and textquotedblleftPresence of pre-existing co-morbidities and development of secondary conditions e.g. cardiovascular disease, osteoporosis or diabetestextquotedblright.View this table:Conclusions Patients with GCA have described a range of themes of interest in relation to their disease. These data could be used as the basis of developing a patient reported measure of outcome in GCA.Disclosure of Interest None declared

AB - Background Giant cell arteritis (GCA) is the commonest form of systemic vasculitis caused by inflammation of the blood vessels around the head and neck, with the highest incidence in women aged 70textendash79 years (7.4 per 10 000 person-years). Patients present with headache, jaw claudication and polymyalgia rheumatica with visual loss in 20 Treatment is with high dose glucocorticoids.Objectives Identify and define the range of patient experiences in relation to GCA, and effects on health related quality of life in patients from the United Kingdom and Australia.Methods Semi-structured qualitative interviews with patients from the UK and Australia explored health-related quality of life and patient perspectives on the experience of GCA. Interviews were recorded, transcribed and analysed. Patients were purposively sampled to include both genders, a range of disease durations and organ involvement (visual loss and large vessel involvement). Data were analysed with inductive thematic analysis and managed using NVivo 10. The sample size was determined by the point at which no new substantive themes emerged.Results Thirty-one interviews were conducted. Demographics and disease features shown in table 1. Individual sub-codes were identified then grouped into overarching themes: textquotedblleftAnxieties around getting a diagnosis of GCAtextquotedblright, textquotedblleftDescription of symptoms related to GCA and its treatmenttextquotedblright, textquotedblleftLack of bodily strength, stability and stamina; difficulties with completing daily taskstextquotedblright, textquotedblleftDifficulties with participating in social activities, work and caring rolestextquotedblright, textquotedblleftNot feeling normal and impact on general perception of healthtextquotedblright, textquotedblleftAnxiety and fear of the futuretextquotedblright. Contextual factors impacted on how patients experienced GCA including textquotedblleftResponse to treatment and adverse effectstextquotedblright, textquotedblleftReceiving support from family, friends and health care workerstextquotedblright, textquotedblleftAdopting successful self-management techniques, e.g. keeping fit and activetextquotedblright and textquotedblleftPresence of pre-existing co-morbidities and development of secondary conditions e.g. cardiovascular disease, osteoporosis or diabetestextquotedblright.View this table:Conclusions Patients with GCA have described a range of themes of interest in relation to their disease. These data could be used as the basis of developing a patient reported measure of outcome in GCA.Disclosure of Interest None declared

U2 - 10.1136/annrheumdis-2018-eular.4017

DO - 10.1136/annrheumdis-2018-eular.4017

M3 - Article

VL - 77

SP - 777

EP - 777

JO - Annals of the Rheumatic Diseases

JF - Annals of the Rheumatic Diseases

SN - 0003-4967

IS - Suppl 2

ER -