236 The prevalence and impact of fatigue and physical activity in people with primary antiphospholipid syndrome: a mixed methods study

Bearne, Lindsay; D’Cruz, David; Nel, Louise; Georgopoulou, Sophia; Andrews, Josephine T.; Bieles, Julie; Suarez, B.; Williamson, Thomas H.; Stolarck, Katrine; Tully, A.; Lempp, Heidi

doi:10.1093/rheumatology/kez107.052

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“…In Phase 1, a secondary thematic qualitative data analysis was undertaken retrospectively from 61 audiorecorded 1:1 interview transcripts from four existing data sets, with interview studies dating between 2004-2015 (21-24). Primary research questions focused on the impact of fatigue and inactivity in IIM and APS, and the experiences, expectations and needs of patients with RA about their disease management (21)(22)(23)(24). In Phase 2, a PPI group of people with RA (n = 4) was set up to explore and validate the ndings of the thematic analysis.…”

Section: Methodsmentioning

confidence: 99%

“…1. Phase 1 demographic data was previously reported (21)(22)(23)(24) and was not formally collected during Phases 2-5.…”

Section: Study Samplementioning

confidence: 99%

“…All four anonymized original data sets used in Phases 1-3 had received written ethics approval (21)(22)(23)(24). Author H.L.…”

Section: Ethical Considerationsmentioning

confidence: 99%

“…Using the computer software program NVivo 12, a thematic secondary qualitative data analysis was undertaken by author O.K. retrospectively from 61 audio-recorded interview transcripts from four existing data sets (21)(22)(23)(24). Through three codeing phases, codes were generated which identi ed six broad key domains: pain, fatigue, physical consequence of disease, mood, social impact and healthcare related issues.…”

Section: Phase 1: Secondary Analysismentioning

confidence: 99%

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Development of the Rheumatoid Arthritis Distress Scale (RADS) – A New Tool to Identify Disease-Specific Distress in Patients with Rheumatoid Arthritis

Silke

Kirresh

Sturt

et al. 2021

Preprint

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Background. Patients with Rheumatoid Arthritis (RA) may experience psychological distress (depression, anxiety) in addition to their physical symptoms. People with RA may also experience disease-specific distress (DSD), related to the specific burden of living with their life-long condition. DSD is a patient reported outcome in several long-term conditions, including type 1 and 2 diabetes. The aims of this study were to determine whether DSD is experienced by people with RA, and if so, develop a Patient Reported Outcome Measure (PROM) to assess for DSD in people with RA.Methods. A five-phased qualitative study was conducted which consisted of a secondary data analysis of 61 interviews of people with rheumatological disease (Phase 1), validation of findings via a Patient and Public Involvement (PPI) group of people with RA (n=4) (Phase 2), item generation for a PROM (Phase 3) and establishing face and content validity of the PROM via PPI group (n=4) and individual cognitive interviews (n=9) of people with RA respectively (Phase 4 and 5).The final PROM was presented at a Patient Education Evening for patients with long-term rheumatological conditions, including RA, and carers.Results. Five themes of rheumatological disease distress emerged from Phase 1, which were validated in the Phase 2 PPI group. After Phases 3-5, the Rheumatoid Arthritis Distress Scale (RADS) was formed of 39 items and 3 supplementary questions. Overall participants reported the content of the RADS to be clear and relevant, and that DSD is a valid concept in RA, distinct from other entities like clinical depression or anxiety.Conclusions. DSD appears to be an important concept in RA. The 39-item RADS demonstrates acceptable face and content validity in this patient group. Further psychometric testing is needed. The RADS may be a useful tool for healthcare professionals to identify RA distress.

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Section: Methodsmentioning

confidence: 99%

“…1. Phase 1 demographic data was previously reported (21)(22)(23)(24) and was not formally collected during Phases 2-5.…”

Section: Study Samplementioning

confidence: 99%

“…All four anonymized original data sets used in Phases 1-3 had received written ethics approval (21)(22)(23)(24). Author H.L.…”

Section: Ethical Considerationsmentioning

confidence: 99%

Section: Phase 1: Secondary Analysismentioning

confidence: 99%

See 2 more Smart Citations

Development of the Rheumatoid Arthritis Distress Scale (RADS) – A New Tool to Identify Disease-Specific Distress in Patients with Rheumatoid Arthritis

Silke

Kirresh

Sturt

et al. 2021

Preprint

Self Cite

View full text Add to dashboard Cite

show abstract

236 The prevalence and impact of fatigue and physical activity in people with primary antiphospholipid syndrome: a mixed methods study

Cited by 1 publication

References 0 publications

Development of the Rheumatoid Arthritis Distress Scale (RADS) – A New Tool to Identify Disease-Specific Distress in Patients with Rheumatoid Arthritis

Development of the Rheumatoid Arthritis Distress Scale (RADS) – A New Tool to Identify Disease-Specific Distress in Patients with Rheumatoid Arthritis

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