Patient-reported outcome measures in a population of medically indigent patients with systemic lupus erythematosus in Puerto Rico

Abstract

Objective:To determine patient-reported outcomes measures in indigent patients with systemic lupus erythematosus receiving their healthcare through the Puerto Rico government managed care system and compare these measures with non-indigent patients treated in a private fee-for-service setting.Methods:A cross-sectional study was conducted in a cohort of 98 Puerto Ricans with systemic lupus erythematosus. Patients from the public group (n = 40) were treated in a university-based specialized systemic lupus erythematosus clinic and the private group (n = 58) in a community-based rheumatology practice. Demographic and clinical features and patient-reported outcomes measures per LupusPRO instrument were determined. LupusPRO captures quality-of-life measures in 12 domains. Differences among study groups were examined using chi-square, Fisher’s exact, t-tests, and the Wilcoxon signed-rank test.Results:The mean (standard deviation) age of the study population was 44.9 (12.0) years; 94 (95.9%) were women. Patients in the public setting were younger and were more likely to have renal disease and elevated anti-double-stranded DNA antibodies, and being treated with azathioprine and cyclophosphamide. Patients from the public sector were more likely to have better quality-of-life measures in the LupusPRO domains of pain/vitality and coping. No significant differences were observed for the domains of lupus symptoms, physical health, emotional health, body image, cognition, procreation, lupus medications, desires/goals, social support, and satisfaction with medical care.Conclusion:Despite having a lower socioeconomic status and worse clinical status, systemic lupus erythematosus patients from the public sector had equal or better patient-reported outcomes measures than those treated in the private setting. This favorable outcome may be associated with the comprehensive healthcare received by these patients in a specialized lupus clinic.

Self‐concept and body image of people living with lupus: A systematic review

“…SLE is commonly associated with hair loss and changes in appearance, 23,40 as well as psychosocial needs 37 and symptoms related to vasoconstriction. 26 Emotional and sexual life is disturbed, 10,29 and QoL suffers as a result of the disease. 22,24 In addition, problems with facial appearance and weight have a strong correlation with BI.…”

“…Instead, they concentrated on issues such as QoL, 18,25,[27][28][29] psychosocial needs, 23,24 quality of sleep, and sexual disfunction, 26,30 but used BI as a questionnaire domain to measure these factors; therefore, they provide information on BI for discussion, even if indirectly. The most reported and evaluated feelings associated with BI changes were depression, [22][23][24][25][26][27] anxiety, 10,23,24,27 social isolation, 42 anguish, 41 and helplessness.…”

“…25 In studies that did not calculate Cronbach's alpha, evaluations from previous studies were reported. [26][27][28][29][30] Quantitative studies carried out bivariate analyses using the following statistical tests: (a) Chi-squared test; 24,[27][28][29]31 (b) Student's t test; 10,26,30,31 (c) one-way analysis of variance (ANOVA); 23,24 (d) Mann-Whitney U test; 27,28 and (e) correlations. 28,30 When indicated, non-parametric tests were applied.…”

“…28,30 When indicated, non-parametric tests were applied. 28,29,31,32 Some studies also performed multivariate analyses. 10,[24][25][26][27]30 Qualitative studies examining the singularity of living experiences, the emerging cascading process, and the revelations of the participants 33 included 4 phenomenological studies, 11,34-36 3 conceptual analysis studies based on focus groups, [37][38][39] and a content analysis of individual discourse in 3 studies.…”

“…Appearance does not reflect who people with lupus nephritis are. 29,31 Ethnicity and other individual factors have an impact on the prevalence and severity of the disease, and may generate different feelings about BI in each person. 32 Many people with SLE use cosmetics to help their self-image, 31 a time-consuming and expensive process.…”