Systemic lupus erythematosus in three ethnic groups: V. Acculturation, health-related attitudes and behaviors, and disease activity in Hispanic patients from the LUMINA Cohort

Abstract

Objective. To assess the relationship between ac-culturation and clinical, socioeconomic-demographic , and behavioral/psychosocial features in Hispanic patients with systemic lupus erythemato-sus (SLE) from the LUMINA (Lupus in Minority Populations , Nature versus Nurture) cohort. Methods. An empirically derived questionnaire was administered to 67 Mexican American SLE patients participating in a longitudinal study of outcome. This questionnaire inquired about place of birth, upbringing and length of stay in the United States, language (proficiency, usage, and preferences; English/bilingual versus Spanish), type of neighborhood , self-identity, and social interactions. Responses to this questionnaire and an informal interaction with a single bilingual, bicultural Mexican American research assistant were used to generate a score on a 10-cm anchored visual analog scale (VAS) (0 no acculturation and 10 maximum accultur-ation). The responses to the questionnaire were then quantified and scored by a physician who was unaware of the VAS. A composite score was then obtained utilizing 4 of the 6 components of the instrument. The VAS was found to have adequate sensitivity (91%), specificity (88%), and overall pre-dictive value (89%) when the composite score was used as the validity criterion. Therefore, the VAS was used in all subsequent analyses; the median in this VAS separated patients into high and low ac-culturation groups. The relationship between accul-turation and sociodemographic, behavioral/psycho-social (social support, abnormal illness-related behaviors, and helplessness) and clinical variables (disease duration, onset type, number of American College of Rheumatology criteria met, disease activity , and damage) at study entry was then explored.

The Use of a Decision Board to Elicit Brazilian Patients' and Physicians' Preferences for Treatment: The Case of Lupus Nephritis

“…The strengths lie in the fact that, by considering themselves patients, potentially the physicians will make their decisions from the point of view of a patient. Different from other studies that have assessed the preference of physicians and patients, we tried to assess the physician choice, encouraging them to place themselves on the other side and make their decisions accordingly [15][16][17][18][19][20][21]. By excluding rheumatologists, we avoid decisions that are influenced by clinical practice and well known evidence.…”

“…This information may help us understand how medical knowledge and training can influence choices. This in turn can contribute to the design of education strategies that can help both patients and physicians communicate and deliberate while attempting to choose the best treatment for the patient [15][16][17][18][19][20][21][22][23][24][25].…”

“…Risk/benefit trade-off justifications were those where patients, when choosing their preferred option, tried to consider all of the characteristics of both treatment options (i.e., their potential risks and effectiveness). Practicality justifications were those where the most important factor in choosing the treatment was how the drug was administered and how it would affect the interviewee's day-to-day activities [15][16][17][18][19][20][21][22][23][24][25]. The methodology used to categorize the justifications was presented in an article on developing and validating the Brazilian LN DB [25].…”

“…Several studies have been exploring patient preferences on the context of lupus disease. However they usually do not use a decision tool to help the process of decision making [15][16][17][18][19][20][21].…”

“…Although several studies have attempted to assess the existence of discrepancies between physician and patient preferences regarding the same health care issue, most have used physicians who specialize in the disease in question [15][16][17][18][19][20][21]. In our study, we deliberately did not use rheumatologists for the reasons explained in more detail below.…”