Patient-reported flare frequency is associated with diminished quality of life and family role functioning in systemic lupus erythematosus

Katz, Patricia P.; Wan, George J.; Daly, Paola; Topf, Lauren; Connolly-Strong, Erin; Bostic, Ryan; Reed, Michael L.

doi:10.1007/s11136-020-02572-9

Cited by 19 publications

(15 citation statements)

References 30 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…In the long term, both disease flares and oral glucocorticoid use have been linked to organ damage, which itself increases mortality ( 22 , 23 , 24 , 25 , 26 ). Flares are also associated with reduced health‐related quality of life, and flare severity together with oral glucocorticoid use correlate with health care costs ( 27 , 28 , 29 , 30 , 31 ). A key SLE treatment goal therefore is to prevent flares while minimizing oral glucocorticoid exposure, which in turn is expected to reduce medical resource utilization ( 27 , 28 , 29 , 30 , 32 , 33 ).…”

Section: Discussionmentioning

confidence: 99%

What Does It Mean to Be a British Isles Lupus Assessment Group–Based Composite Lupus Assessment Responder? Post Hoc Analysis of Two Phase III Trials

Furie

Morand

Bruce

et al. 2021

Arthritis & Rheumatology

View full text Add to dashboard Cite

Objective The British Isles Lupus Assessment Group–based Composite Lupus Assessment (BICLA) is a validated global measure of treatment response in systemic lupus erythematosus (SLE) clinical trials. To understand the relevance of BICLA in clinical practice, we investigated relationships between BICLA response and routine SLE assessments, patient‐reported outcomes (PROs), and medical resource utilization. Methods This was a post hoc analysis of pooled data from the phase III, randomized, placebo‐controlled, 52‐week TULIP‐1 (ClinicalTrials.gov identifier: NCT02446912; n = 457) and TULIP‐2 (ClinicalTrials.gov identifier: NCT02446899; n = 362) trials of intravenous anifrolumab (150/300 mg once every 4 weeks) in patients with moderate‐to‐severe SLE. Changes from baseline to week 52 in clinical assessments, PROs, and medical resource use were compared in BICLA responders versus nonresponders, regardless of treatment assignment. Results BICLA responders (n = 318) achieved significantly improved outcomes compared with nonresponders (n = 501), including lower flare rates, higher rates of attainment of sustained oral glucocorticoid taper to ≤7.5 mg/day, greater improvements in PROs (Functional Assessment of Chronic Illness Therapy–Fatigue, Short Form 36 Health Survey), and fewer SLE‐related hospitalizations/emergency department visits (all nominal P < 0.001). Compared with nonresponders, BICLA responders had greater improvements in global and organ‐specific disease activity (Physician’s Global Assessment, SLE Disease Activity Index 2000, Cutaneous Lupus Erythematosus Disease Area and Severity Index Activity, and joint counts; all nominal P < 0.001). BICLA responders had fewer lupus‐related serious adverse events than nonresponders. Conclusion BICLA response is associated with clinical benefit in SLE assessments, PROs, and medical resource utilization, confirming its value as a clinical trial end point that is associated with measures important to patient care.

show abstract

Section: Discussionmentioning

confidence: 99%

What Does It Mean to Be a British Isles Lupus Assessment Group–Based Composite Lupus Assessment Responder? Post Hoc Analysis of Two Phase III Trials

Furie

Morand

Bruce

et al. 2021

Arthritis & Rheumatology

View full text Add to dashboard Cite

show abstract

“…In the literature, we find instruments that measure the quality of life in patients with SLE but not in patients with SLE and CLE: SSC [26], SMILEY [27], SLEQOL [28], L-QoL [29], Lupus QoL [13] and Lupus pro [14]. These instruments are too extensive and do not follow the indications of experts such as García-Riaño [31]: to include patients with SLE and CLE perspectives to facilitate a holistic approach regarding their disease and its management [34,35]. Moreover, most of them were originally written in English, and had not been generated in the Spanish context, without considering the parameters assumed to be social and individual on the quality of life [35,36].…”

Section: Discussionmentioning

confidence: 99%

“…These results are in line with those proposed by authors such as Ng and Chan [54] because of their symptomatology, the unpredictable sequence of disease outbreaks, the side effects of medication, SLE patients may not feel able to establish relationships. Prevention of disease outbreaks is a cornerstone of clinical care for lupus, including patients' perspectives on their disease and its management can help design patient-centered strategies to improve quality of life [34,35].…”

Section: Discussionmentioning

confidence: 99%

“…It is also recommended to perform this measurement not only taking into account scales that measure organic damage or disease activity, since these factors influence but are not determinant. This includes patients' perspectives to facilitate a holistic approach regarding their disease and its management [34,35]. It is also important that it is developed in the society in which it will be used since the socioeconomic and historical, ethical, and political realities influence the subjects' perception and establish the parameters assumed to be social and individual with regard to the quality of life [35,36].…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Lupus Erythematosus Quality of Life Questionnaire (LEQoL): Development and Psychometric Properties

Castellano-Rioja

Giménez-Espert

Soto‐Rubio

2020

IJERPH

View full text Add to dashboard Cite

Lupus erythematosus (LE) affects patients’ quality of life. Nevertheless, no instrument has been developed to assess the quality of life in systemic lupus erythematosus (SLE) and cutaneous lupus erythematosus (CLE) patients. This study aims to develop and psychometrically test the “Quality of Life of Patients with Lupus Erythematosus Instrument” (LEQoL) and study the quality of life of these patients. Finally, percentiles for interpreting scores of LEQoL in patients with LE are provided. This study is cross-sectional, with a sample of 158 patients recruited from a lupus association for the psychometric evaluation of the final version of LEQoL. The scale’s reliability was assessed by Cronbach’s alpha, composite reliability (CR), and average variance extracted (AVE). Validity was examined through exploratory factorial analyses (EFA) and confirmatory factorial analyses (CFA). The definitive model, composed of 21 items grouped into five factors, presented good psychometric properties. Mean levels of quality of life were observed in patients with systemic LE, with higher values in patients with cutaneous LE. The LEQoL instrument is a useful tool for assessing the quality of life of patients with LE, allowing the evaluation of current clinical practices, the identification of educational needs, and the assessment of the effectiveness of interventions intended to improve the quality of life of patients with LE, SLE, and CLE.

show abstract

“…Although 100 patients reported AEs, only 11 reported a flare. This method for identifying flares is supported by data showing that SLE patients are reliable narrators of their disease experience and that self-reported SLE flares are associated with clinically meaningful outcomes [ 4 , 5 ]. Given that the majority of patients reported AEs, whereas few reported flares, it does not appear that side effects alone explain our results.…”

mentioning

confidence: 99%

Adverse events and disease flares after SARS-CoV-2 vaccination in patients with systemic lupus erythematosus

et al. 2021

View full text Add to dashboard Cite

Patient-reported flare frequency is associated with diminished quality of life and family role functioning in systemic lupus erythematosus

Cited by 19 publications

References 30 publications

What Does It Mean to Be a British Isles Lupus Assessment Group–Based Composite Lupus Assessment Responder? Post Hoc Analysis of Two Phase III Trials

What Does It Mean to Be a British Isles Lupus Assessment Group–Based Composite Lupus Assessment Responder? Post Hoc Analysis of Two Phase III Trials

Lupus Erythematosus Quality of Life Questionnaire (LEQoL): Development and Psychometric Properties

Adverse events and disease flares after SARS-CoV-2 vaccination in patients with systemic lupus erythematosus

Contact Info

Product

Resources

About