Divergent perceptions in health-related quality of life between family members and patients with rheumatoid arthritis, systemic lupus erythematosus, and ankylosing spondylitis

Ramos-Remus, César; Castillo-Ortiz, José Dionisio; Sandoval-Castro, Carlos; Páez-Agraz, Francisco; Sánchez-Ortíz, Adriana; Aceves‐Ávila, Francisco Javier

doi:10.1007/s00296-014-3044-9

Cited by 6 publications

(3 citation statements)

References 23 publications

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“…Results revealed that most of the patients with fibromyalgia perceived themselves with moderate to severe disability. Overall, the degree of Pain intensity in centimeter (0-10), depression (0 = abscent/ 1 = present), Alexithymia (0 = abscent/ 1 = present) disability in this sample of patients with FM was 1.5 to 2 times greater than that reported in comparable studies of patients with other rheumatologic conditions such as osteoarthritis [30], systemic lupus erythematosus [31,32], and ankylosing spondylitis [31]. Besides, degree of disability was similar to rheumatoid arthritis patients [31,33,34].…”

Section: Discussioncontrasting

confidence: 52%

Self-reported disability in women with fibromyalgia from a tertiary care center

Horta-Baas

Figueroa

2019

Adv Rheumatol

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Background: The World Health Organization Disability Assessment Schedule (WHODAS) 2.0 is a generic instrument to assess disability. Pain and psychological factors seem to play a pronounced disabling role in fibromyalgia (FM). There are few studies that investigate the factors associated with disability in patients with fibromyalgia from the patient's perspective. Information about FM disability using self-reported questionnaires is limited. This study aimed to assess the relationship between the ordinal response variable (degree of disability), and four explanatory variables: pain intensity, depression, anxiety, and alexithymia. Methods: One hundred fifteen women with FM were enrolled in the cross-sectional study. For the assessment of disability the WHODAS 2.0 (36-item version) was used. Univariate and multivariate (ordinal logistic regression) analyses were performed to assess the relationship between pain (Visual Analogue Scale), depression and anxiety (Hospital Anxiety and Depression Scale), alexithymia (Modified Toronto Alexithymia Scale) and disability. Results: Disability was detected by global WHODAS score in 114 patients (99%), with the corresponding percentages for mild, moderate and severe disability being 11.3, 46.96 and 40.87%, respectively. Global WHODAS score was more severe among subjects with depression (50 vs 36.4, p < 0.001, effect size = 0.33) and alexithymia (50 vs 33.6, p < 0.001, effect size = 0.38). Pain intensity mean scores for mild, moderate and severe disability were 5.0, 6.1 and 7.3, respectively (p < 0.001, omega-squared = 0.12). Pain intensity explained the global disability degree and its domains except for the cognitive one. Whereas, depression explained cognitive and personal relation domains. On the other hand, alexithymia explained global disability degree and all domains of WHODAS 2.0 questionnaire. Conclusions: Most of the patients with fibromyalgia perceived themselves with moderate to severe disability. The main explanatory variables of the perceived disability were the pain intensity and psychological factors (alexithymia and depression).

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Section: Discussioncontrasting

confidence: 52%

Self-reported disability in women with fibromyalgia from a tertiary care center

Horta-Baas

Figueroa

2019

Adv Rheumatol

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“…It has been shown that relatives and families tend to underestimate the effects on HRQOL compared with that perceived by patients themselves, and this may lead to problems in relating to others, communication and social support in patients with SLE [30]. García-Carrasco et al found that HRQOL, as measured by the SF-36 and by the LupusQol, was low in Mexican patients with SLE.…”

Section: Introductionmentioning

confidence: 99%

Factors Associated with Health-Related Quality of Life in Mexican Lupus Patients Using the LupusQol

et al. 2017

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IntroductionHealth-related quality of life (HRQOL) is affected by numerous clinical variables, including disease activity, damage, fibromyalgia, depression and anxiety. However, these associations have not yet been described in Mexican patients with systemic lupus erythematosus (SLE).ObjectiveTo evaluate the relationship between disease activity, damage, depression and fibromyalgia and HRQOL measured by the LupusQoL-instrument in Mexican patients with SLE.MethodsA cross-sectional study was conducted in women fulfilling the 1997 ACR classification criteria for SLE. HRQOL was evaluated using a disease-specific instrument for SLE, the LupusQoL (validated for the Spanish-speaking population). Patients were evaluated clinically to determine the degree of disease activity and damage using the Mexican Systemic Lupus Erythematosus Disease Activity Index (Mex-SLEDAI) and Systemic Lupus International Collaborating Clinics-Damage Index (SLICC), respectively. Fibromyalgia and depression were assessed using the ACR criteria and the CES-D scale, respectively. The relationship between HRQOL and these variables was measured using Spearman’s rank correlation coefficient and linear regression analysis.ResultsA total of 138 women with SLE, age 40.3±11 years, disease duration 8.8±6.4 years, with disease activity in 51.4%, depression in 50%, damage in 43% and fibromyalgia in 19.6% were included. Poorer HRQOL correlated with depression (r = -0.61; p< 0.005), fibromyalgia (r = -0.42; p< 0.005), disease activity (r = -0.37; p < 0.005) and damage (r = -0.31; p < 0.005). In the multivariate linear regression analysis, damage (β = -3.756, p<0.005), fibromyalgia (β = -0.920, p<0.005), depression (β = -0.911, p<0.005) and disease activity (β = -0.911, p<0.005) were associated with poor HRQOL.ConclusionSLE disease activity, damage, fibromyalgia and depression were associated with poor HRQOL in our sample of Mexican SLE patients.

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“…This, of course, holds for all persons with SLE [16,17,23]. The cautious diagnostic and therapeutic steps by the family physician are probably dated, although they are likely not fundamentally different from todays' approach.…”

Section: Resultsmentioning

confidence: 93%

Wolf—living with SLE in a novel

2014

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Living with SLE is a major task for the patients and their social environment. In modern health care, quality of life is increasingly incorporated as an important outcome. Studying novels about illness is a new method of exploring quality of life in patients with an illness. In this paper, we use the novel A tribe of women by Hervé Bazin as data to explore how a patient with SLE gives meaning to her illness and how her social environment reacts toward the illness and its treatment. We find that the novel-probably the only one where SLE is a major subject-offers a rich set of data on "living with SLE". Our findings may be instrumental in encouraging health care providers to explore quality of life in patients with SLE, incorporating self-management in order to improve their quality of life, and in teaching medical students about "medical humanities".

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Divergent perceptions in health-related quality of life between family members and patients with rheumatoid arthritis, systemic lupus erythematosus, and ankylosing spondylitis

Cited by 6 publications

References 23 publications

Self-reported disability in women with fibromyalgia from a tertiary care center

Self-reported disability in women with fibromyalgia from a tertiary care center

Factors Associated with Health-Related Quality of Life in Mexican Lupus Patients Using the LupusQol

Wolf—living with SLE in a novel

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