What constitutes uncertainty in systemic lupus erythematosus and rheumatoid arthritis?

Cleanthous, Sophie; Newman, Stanton; Shipley, Michael; Isenberg, David; Cano, Stefan

doi:10.1080/08870446.2012.701628

Cited by 32 publications

(73 citation statements)

References 41 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Transcripts were analysed thematically using a detailed line by line coding to examine uncertainty domains following Braun and Clarke's (2006) six-step approach. Quotations were coded as 'uncertain' on the basis of 'a lack of certainty, or any state of limited knowledge, understanding or worry regarding an existing or future outcome' (Cleanthous et al, 2013) using QSR Nvivo 10. Each quotation was then compared to the conceptual domains of uncertainty found by Cleanthous et al (2013).…”

Section: Analytical Approachmentioning

confidence: 99%

“…Quotations were coded as 'uncertain' on the basis of 'a lack of certainty, or any state of limited knowledge, understanding or worry regarding an existing or future outcome' (Cleanthous et al, 2013) using QSR Nvivo 10. Each quotation was then compared to the conceptual domains of uncertainty found by Cleanthous et al (2013). New codes and domains were created where quotations expressing uncertainty did not adequately fit within the existing framework.…”

Section: Analytical Approachmentioning

confidence: 99%

“…However the validity and comprehensiveness of Mishel's (Mishel, 1988(Mishel, , 1990) definition of uncertainty as 'an inability to determine the meaning of illness related events' across all illnesses and patient groups has been called into question in several qualitative studies (Brashers et al, 2003;Cleanthous, Newman, Shipley, Isenberg, & Cano, 2013;Kasper, Geiger, Freiberger, & Schmidt, 2008). Research shows that in patients uncertainty extends beyond illness related events (e.g.…”

Section: Introductionmentioning

confidence: 99%

“…social functioning) and is condition specific (Cleanthous et al, 2013). In their exploration of uncertainty in systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) Cleanthous et al (2013) found five overarching domains of illness uncertainty: symptoms and progression, medical management, self-management, impact and social functioning. However within these domains illness uncertainty was found to vary between the two conditions.…”

Section: Introductionmentioning

confidence: 99%

“…This study aimed specifically to test the applicability of Cleanthous et al's (2013) five domain model of patient uncertainty of illness in a sample of caregivers. Due to its disabling nature almost all patients with PD have a carer, most commonly their spouse (Schrag, Hovris, Morley, Quinn, & Jahanshahi, 2006).…”

Section: Introductionmentioning

confidence: 99%

See 4 more Smart Citations

Further explorations of illness uncertainty: carers’ experiences of Parkinson’s disease

Hurt

Cleanthous²,

Newman

2017

Psychology & Health

View full text Add to dashboard Cite

This is the accepted version of the paper.This version of the publication may differ from the final published version. Permanent repository link AbstractObjective: Dominant models of illness uncertainty define uncertainty as 'an inability to determine the meaning of illness-related events'. Recent research has shown patient uncertainty to be multidimensional encompassing personal issues indirectly affected by illness. The nature of carer uncertainty has yet to be fully explored. The present study aimed to investigate the nature of illness uncertainty in the carers of patients with Parkinson's disease (PD).Design: Eighteen carers of a spouse with PD participated in semi-structured interviews.Transcripts were thematically analysed, statements were coded as uncertain if they reflected 'a lack of certainty, or a state of limited knowledge, understanding or worry regarding an existing or future outcome'.Results: The domains of uncertainty expressed by carers closely fitted the five domain framework of patient uncertainty: symptoms and prognosis, medical management, selfmanagement, social functioning and impact. An additional 'carer-role' domain was identified.Conclusions: Carer uncertainty about PD went beyond issues directly related to the illness.The findings have implications for research into uncertainty suggesting that widely used measures may not be accurately capturing the nature of carer uncertainty about chronic illness. The breadth of uncertainty reported has implications for the provision of appropriate support to improve caregiver well-being.

show abstract

Section: Analytical Approachmentioning

confidence: 99%

Section: Analytical Approachmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Further explorations of illness uncertainty: carers’ experiences of Parkinson’s disease

Hurt

Cleanthous²,

Newman

2017

Psychology & Health

View full text Add to dashboard Cite

show abstract

Perspectives of Medical Specialists From Different Disciplines on the Management of Systemic Lupus Erythematosus: An Interview Study

Tunnicliffe

Singh‐Grewal

Craig

et al. 2018

Arthritis Care & Research

View full text Add to dashboard Cite

Specialists strive to deliver evidence-informed patient-centered care, but recognize that they are anchored by their training. To overcome uncertainties in clinical management due to lack of high-quality evidence and specialty silo structures, specialists translated evidence from other disease settings and collaborated with other specialists in routine care. Developing robust evidence, tools to support evidence-informed decisions, and multidisciplinary shared-care pathways may improve the management of people with this complex disease.

show abstract

Longitudinal Occurrence and Predictors of Patient‐Provider Discordance Between Global Assessments of Disease Activity in Rheumatoid Arthritis: A Case–Control Study

Challa

Kvrgic

Crowson

et al. 2019

Arthritis Care & Research

View full text Add to dashboard Cite

Objective:The objective was to identify longitudinal predictors of discordance between patients with rheumatoid arthritis (RA) and their health care providers, where patient global assessment of disease activity is substantially higher than provider global assessment. Methods:This retrospective case-control study included 102 cases with positive discordance (ie, ≥25 mm between patient and provider global assessments) and 102 controls without discordance who were matched for age, sex, RA duration, and Clinical Disease Activity Index (CDAI). Data were collected at the baseline visit (date of diagnosis or earliest available visit), the index visit (participation in a previous cross-sectional study), and at up to 11 additional visits before the index visit. Data included patient characteristics, disease activity measures, disease activity score in 28 joints for C-reactive protein with the 3-variable version (DAS28-CRP[3]), and medications. Data were analyzed by using linear and logistic regression models with smoothing splines for nonlinear trends.Results: Overall, the mean age was 63 years, 75% were female, and mean RA duration was 10 years. Compared with controls, cases had higher rates of discordant visits during the 4 years before the index visit, and they had higher CDAI and DAS28-CRP(3) earlier in the disease course. Cases more frequently had antinuclear antibodies, nonerosive disease, prior depression, or prior use of antidepressants or fibromyalgia medications. Disease-modifying medication use was not different between cases and controls. Conclusion:The findings inform new hypotheses about the relationships of disease activity and antinuclear antibodies to the later occurrence of positive discordance among patients with RA.

show abstract

What constitutes uncertainty in systemic lupus erythematosus and rheumatoid arthritis?

Cited by 32 publications

References 41 publications

Further explorations of illness uncertainty: carers’ experiences of Parkinson’s disease

Further explorations of illness uncertainty: carers’ experiences of Parkinson’s disease

Perspectives of Medical Specialists From Different Disciplines on the Management of Systemic Lupus Erythematosus: An Interview Study

Longitudinal Occurrence and Predictors of Patient‐Provider Discordance Between Global Assessments of Disease Activity in Rheumatoid Arthritis: A Case–Control Study

Contact Info

Product

Resources

About