The caregiver burden in lupus: findings from UNVEIL, a national online lupus survey in the United States

Sawah, S. Al; Daly, R Paola; Foster, Stephan L.; Naegeli, April N.; Benjamin, Katy; Doll, Helen; Bond, George C.; Moshkovich, Olga; Alarcón, Graciela S.

doi:10.1177/0961203316651743

Cited by 19 publications

(8 citation statements)

References 18 publications

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“…18 19 In 2010, 4 69.5% reported that lupus had affected their career versus 65.8% in 2020; of those, 29.4% reported the need to work flexible hours in 2010 versus 31.9% in 2020. Similar results have been shown in large US studies, [20][21][22] also showing a relationship between disease activity and work productivity loss, as well as with activity impairment. This yielded generally high levels of anxiety about the future in this survey.…”

Section: Impact Of Sle On Studies Work and Family Lifesupporting

confidence: 89%

Living with systemic lupus erythematosus in 2020: a European patient survey

Cornet¹,

Andersen²,

Myllys³

et al. 2021

Lupus Sci Med

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ObjectiveThe aim of this study was to analyse the 2020 burden of Systemic Lupus Erythematosus (SLE) in Europe, from the patients’ perspective.MethodsIn May 2020, Lupus Europe, the European umbrella patient association for SLE, designed and disseminated a multilingual anonymous online survey to individuals with a self-reported physician’s diagnosis of SLE living in Europe.ResultsData from 4375 SLE survey respondents (95.9% women, median age: 45 (IQR: 36–54) years, 70.7% Caucasians) from 35 European countries were analysed. The median age at SLE diagnosis was 30 years (IQR: 22–40) and the median diagnosis delay was 2 years (IQR: 0–6). The most commonly affected organ-systems included the joints (81.8%) and skin (59.4%), with renal involvement in 30%. Another diagnosis was given before that of SLE in 45.0%, including psychological/mental disorders in 9.1% and fibromyalgia in 5.9%. The median number of symptoms reported was 9 (IQR: 6–11) out of 21, with fatigue most common (85.3%) and most bothersome. The median number of SLE-related medications was 5 (IQR: 3–7), including antimalarials (75%), oral glucocorticoids (52.4%), immunosuppressants (39.8%) and biologics (10.9%). Respondents reported significant impact over their studies, career and emotional/sexual life in 50.7%, 57.9% and 38.2%, respectively. Appropriate access to care was highly variable across countries and care component.ConclusionThis survey underlines the 2020 burden and strong heterogeneity in the care of SLE across Europe, from the patient’s perspective. Altogether, these data may prove crucial to physicians, patients and policy-makers to improve the diagnosis and management of this rare and complex disease.

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Section: Impact Of Sle On Studies Work and Family Lifesupporting

confidence: 89%

Living with systemic lupus erythematosus in 2020: a European patient survey

Cornet¹,

Andersen²,

Myllys³

et al. 2021

Lupus Sci Med

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“…6 Only three other studies, all performed in the USA, have assessed the impact of SLE on carers; all of these studies involved relatively small carer numbers ( N = 6, 10 and 253). 7,14,15 An additional limitation was that our survey was mainly limited to Caucasian and computer literate participants with the time to answer the survey; thus, it may not be representative of all SLE patients in the UK. There may also have been carer selection bias, with only carers who felt particularly burdened completing the survey.…”

Section: Discussionmentioning

confidence: 99%

“…No cure exists for SLE, and the burden of illness is high for patients and carers. 5–7 Patient-oriented research on the burden of SLE would help further understanding of how outcomes in patients with SLE could be improved. Questionnaires measuring patient-reported outcomes (PROs), such as fatigue and health-related quality of life (HRQoL), provide valuable information about the burden of a disease.…”

Section: Introductionmentioning

confidence: 99%

“…Results from surveys using PROs conducted in the USA, Canada and Europe suggest SLE has a detrimental impact on patient HRQoL, employment and work productivity, and on carers. 5–7,9–11 However, UK-specific data on the burden of SLE are lacking, particularly regarding the burden on carers. To address this, we performed an online survey (UNVEIL UK) using PROs to explore the burden of SLE for patients and carers of patients with the condition.…”

Section: Introductionmentioning

confidence: 99%

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Burden of illness in systemic lupus erythematosus: results from a UK patient and carer online survey

Kent

Davidson

Newman

et al. 2017

Lupus

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Objective The objective of this study was to assess the impact of systemic lupus erythematosus (SLE) on patients and carers. Methods Adults with SLE and carers of SLE patients completed a UK-specific online survey covering many aspects of the disease. Surveys were developed in collaboration with an NHS lupus unit and a lupus patient organization. Results A total of 121 patients and 31 carers completed the surveys. Of the 70% of patients initially misdiagnosed with another condition, 59% received treatment for the misdiagnosis. Fatigue was the most debilitating symptom, experienced daily by 79% of patients. The proportion of patients not reporting flares to healthcare providers varied with flare severity: mild flares (43%), moderate flares (15%) and severe flares (5%). Most patients (89%) reported reduced ability to socialize, and 76% had changed employment; of these, 52% stopped working completely. Over one-half (52%) of carers in paid employment missed time from work, and 55% of carers reported a worsened financial status. Most carers (87%) experienced interference with social activities. Conclusion SLE is commonly misdiagnosed and has a considerable impact on the physical, social and financial status of patients and carers. Increased awareness of the disease among healthcare providers and employers of patients and their carers is needed.

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“…The UNVEIL survey, conducted in 2014 in a partnership with the Lupus Foundation of America, examined the burden of SLE for patients and their caregivers in the US [ 13 – 14 ]. In 2019, the partnership conducted a further survey—SLE-Understanding Preferences, Disease Activity, and Treatment Expectations (SLE-UPDATE)—to provide detailed information on patient experiences, satisfaction, and expectations with current SLE treatment.…”

Section: Introductionmentioning

confidence: 99%

Patient Experiences, Satisfaction, and Expectations with Current Systemic Lupus Erythematosus Treatment: Results of the SLE-UPDATE Survey

Birt

Hadi²,

Sargalo³

et al. 2021

Rheumatol Ther

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Objectives: To provide information on systemic lupus erythematosus (SLE) patients' experiences, satisfaction, and expectations with treatments and examine the association between treatment satisfaction and patient-reported outcomes (PRO). Methods: A cross-sectional, non-interventional, online survey of US adult patients with SLE was conducted in 2019. The survey consisted of 104 questions about SLE and the following PRO instruments:

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The caregiver burden in lupus: findings from UNVEIL, a national online lupus survey in the United States

Cited by 19 publications

References 18 publications

Living with systemic lupus erythematosus in 2020: a European patient survey

Living with systemic lupus erythematosus in 2020: a European patient survey

Burden of illness in systemic lupus erythematosus: results from a UK patient and carer online survey

Patient Experiences, Satisfaction, and Expectations with Current Systemic Lupus Erythematosus Treatment: Results of the SLE-UPDATE Survey

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