ACR Meeting Abstracts

ACR Meeting Abstracts

Abstract Number: 657

Performance of the “Do You Know What I Mean” Questionnaire in the Assessment of Disease Knowledge in Patients with Systemic Lupus Erythematosus

Eliana Serrano1, Silvana Pérez 2, Juan Bande 2, Julia Sosa 1, María Kohan 2, Diana Klajn 2, María Medina 2, Silvia Papasidero 2, José Caracciolo 2, María Leguizamón 3, Susana Mazza 3, Yessika Soria Curi 3, Francisco Huttmann 3, Verónica Bellomio 3, Carla Matellan 4, Marina Micelli 5, Eduardo Kerzberg 6, Claudia Peon 7, Dario Mata 8, Carolina Ayelen Isnardi 9, Dafne Capelusnik 10, Yohena Victor 11, Analía Alvarez 11, Maximiliano Machado Escobar 12, María Yacuzzi 12, Veronica Saurit 13, Natalia Cucchiaro 14, María Crespo Espíndola 14, Grace Loayza Reynolds 15, Yanina Bottinelli 15, Gabriela Garate Correa 16, Ramiro Gomez 17, Diana Dubinsky 18, María de la Torre 19, Cecilia Pisoni 19 and Adriana García Coello 20, 1Hospital General de Agudos Dr. E. Tornú, Ciudad Autonoma de Buenos Aires, Buenos Aires, Argentina, 2Hospital General de Agudos Dr. E. Tornú, Ciudad Autónoma de Buenos Aires, Buenos Aires, Argentina, 3Hospital Ángel C. Padilla, San Miguel de Tucumán, Tucuman, Argentina, 4Hospital General de Agudos Dr. José M. Ramos Mejia, Ciudad Autónoma de Buenos, Buenos Aires, Argentina, 5Hospital General de Agudos Dr. José M. Ramos Mejía, Buenos Aires, Argentina, 6Hospital General de Agudos Dr. José M. Ramos Mejia, Ciudad Autónoma de Buenos Aires, Buenos Aires, Argentina, 7Hospital Dr. Cosme Argerich, Ciudad Autónoma de Buenos Aires, Buenos Aires, Argentina, 8Hospital Cosme Argerich, Buenos Aires, Argentina, 9Instituto de Rehabilitación Psicofísica, Ciudad de Buenos Aires, Ciudad Autonoma de Buenos Aires, Argentina, 10Instituto de Rehabilitacion Psicofisica, CABA, Ciudad Autonoma de Buenos Aires, Argentina, 11Hospital General de Agudos José M. Penna, Ciudad Autónoma de Buenos Aires, Buenos Aires, Argentina, 12Hospital Eva Perón, San Miguel de Tucumán, Tucuman, Argentina, 13Hospital Privado, Centro Médico de Córdoba, Córdoba, Argentina, Cordoba, Argentina, 14Hospital Señor del Milagro, Salta, Salta, Argentina, 15Hospital Posadas, El Palomar, Buenos Aires, Argentina, 16Sanatorio Güemes, Ciudad Autónoma de Buenos Aires, Buenos Aires, Argentina, 17Hospital de Clínicas José de San Martín, Ciudad Autónoma de Buenos Aires, Buenos Aires, Argentina, 18Sanatorio Güemes, Buenos Aires, Argentina, 19Centro de Educación Médica e Investigaciones Clínicas Norberto Quirno (CEMIC), Ciudad Autónoma de Buenos Aires, Buenos Aires, Argentina, 20Hospital General de Agudos Dr. Ignacio Pirovano, Ciudad Autónoma de Buenos Aires, Buenos Aires, Argentina

Meeting: 2019 ACR/ARP Annual Meeting

Keywords:

Session Information

Date: Sunday, November 10, 2019

Title: SLE – Clinical Poster I: Epidemiology & Pathogenesis

Session Type: Poster Session (Sunday)

Session Time: 9:00AM-11:00AM

Background/Purpose:

‘Do you know what I mean?’ is a self-reported questionnaire developed to assess disease knowledge level in Systemic lupus erythematosus (SLE) patients. It is a 27-item true/false questionnaire based on disease outcomes, complications and treatment. The aim of this study was to validate this questionnaire in a cohort of patients with SLE, to assess the level of knowledge of the disease and its association with disease characteristics.

Methods:

Multicenter, observational, cross-sectional, descriptive and analytical study. Consecutive patients ≥ 18 years old with SLE (ACR 97 and SLICC 2012) were included. Sociodemographic variables, disease characteristics and those that could influence the level of knowledge were recorded: level of instruction; age at onset and disease duration; hospitalizations associated with SLE; proximity to SLE (defined as past or current contact with a relative, friend or partner with SLE); and educational exposure (use of internet or social networks, or participation in support groups). The questionnaire was filled out by all the patients. Statistical analysis: Sociodemographic and disease characteristics were described. Cronbach´s alpha and test-retest reliability were determined. For each question, median and interquartile range (IQR) of correct, incorrect and missing answers were recorded. All the comparisons were made with Student’s T test, Chi2 and Fisher’s exact test or Spearman correlation.

Results: A total of 277 SLE patients from 14 centers were included: 89% women, mean age 38.7 years (SD 13). Mean age at SLE onset was 28.7 years (SD 12.5) and median disease duration was 96 months (IQR 36-168). Sixty five percent of patients reported hospitalizations due to SLE and 23% proximity to SLE. Forty percent of patients had high school level education. Twenty three percent  reported educational exposure to SLE: 71% searched information on social networks, 52% on the internet and only 19% attended informative meetings. Cronbach’s alpha was 0.73, no redundant questions were detected and test-retest reliability was 0.78. Median of correct answers was 18 (IQR 15-20) and of incorrect ones 5 (IQR 3-7). An earlier age at disease onset was associated with higher number of correct answers (p < 0.0001). In addition, a higher level of education and educational exposure to SLE were associated with higher knowledge level (p=0.0012 ). Individual question analysis showed that 55% to 77% of patients do not consider SLE as a cardiovascular risk factor or as a cause of death; however, 93% recognized that physical activity could improve bone and heart health. Sixteen to 36% of patients gave incorrect answers in questions regarding glucocorticoid-related adverse effects and between 11% and 50% reported that they didn’t know the answer.

Conclusion:

‘Do you know what I mean?’ proved to be a valid and reliable questionnaire in patients with SLE. In addition, this study showed that the areas of highest lack of knowledge were those associated with cardiovascular impact of the disease and glucocorticoid-related adverse effects. We believe that the use of this questionnaire could be useful as a guide of educational strategies in patients with SLE, in order to improve adherence to treatment and prognosis.

Disclosure: E. Serrano, None; S. Pérez, None; J. Bande, None; J. Sosa, None; M. Kohan, None; D. Klajn, None; M. Medina, None; S. Papasidero, None; J. Caracciolo, None; M. Leguizamón, None; S. Mazza, None; Y. Soria Curi, None; F. Huttmann, None; V. Bellomio, None; C. Matellan, None; M. Micelli, None; E. Kerzberg, None; C. Peon, None; D. Mata, None; C. Isnardi, None; D. Capelusnik, None; Y. Victor, None; A. Alvarez, None; M. Machado Escobar, None; M. Yacuzzi, None; V. Saurit, None; N. Cucchiaro, None; M. Crespo Espíndola, None; G. Loayza Reynolds, None; Y. Bottinelli, None; G. Garate Correa, None; R. Gomez, None; D. Dubinsky, None; M. de la Torre, None; C. Pisoni, None; A. García Coello, None.

To cite this abstract in AMA style:

Serrano E, Pérez S, Bande J, Sosa J, Kohan M, Klajn D, Medina M, Papasidero S, Caracciolo J, Leguizamón M, Mazza S, Soria Curi Y, Huttmann F, Bellomio V, Matellan C, Micelli M, Kerzberg E, Peon C, Mata D, Isnardi C, Capelusnik D, Victor Y, Alvarez A, Machado Escobar M, Yacuzzi M, Saurit V, Cucchiaro N, Crespo Espíndola M, Loayza Reynolds G, Bottinelli Y, Garate Correa G, Gomez R, Dubinsky D, de la Torre M, Pisoni C, García Coello A. Performance of the “Do You Know What I Mean” Questionnaire in the Assessment of Disease Knowledge in Patients with Systemic Lupus Erythematosus [abstract]. Arthritis Rheumatol. 2019; 71 (suppl 10). https://acrabstracts.org/abstract/performance-of-the-do-you-know-what-i-mean-questionnaire-in-the-assessment-of-disease-knowledge-in-patients-with-systemic-lupus-erythematosus/. Accessed .

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