Understanding Illness Perceptions and Self-Efficacy to Manage Chronic Disease among Latinos with Lupus through the 'Hablemos de Lupus' Facebook Page Pubblico

Abstract

Background: Latinos are disproportionately affected by the chronic autoimmune disease systemic lupus erythematosus (SLE), and they also have worse outcomes. Self-efficacy (SE) to manage chronic disease correlates with outcomes.  Illness perception (IP) affects SE, but little is known about SLE patients’ IP and SE.  Objectives: This cross-sectional study aimed to: (1) Understand SLE IP and SE in Latinos (2) Examine IP by sociodemographic and disease characteristics (3) Test whether an increased emotional distress IP associates with low symptom management SE.  Methods: Self-reported survey data was collected anonymously through the educational Facebook page Hablemos de Lupus (followed by 74,000 Spanish-speakers).  Ad-hoc questions assessed sociodemographics and disease characteristics, the Brief Illness Perception Questionnaire assessed IP, PROMIS measures assessed SE, and the Stanford Evaluation Measure assessed communication with physicians. Programming in SAS calculated mean scores, tested IP by subgroups, and used multivariate logistic regression to examine the association of emotional distress IP and symptom management SE.  Results: 1401 patients responded from 19 countries; ages 18-80; 95% females; 33% diagnosed in past three years; 46% with severe SLE. Mean total BIPQ score representing perceived illness threat was 45.1 (SD 10.1), emotional distress was 7.8 (SD 2.1), and illness comprehension was 8.2 (SD 1.9). Emotional distress and illness threat were significantly (p<0.05) higher if recently diagnosed or low SES.  Illness comprehension was higher for those with severe SLE or diagnosis > 5 years. All SE T-scores were lower than the reference population’s (ranging between 42.5 for managing emotions to 46.3 for treatment and symptom management). The mean provider communication score was 2.5 (SD 1.1). The adjusted OR was 1.44 [95% CI 1.29-1.61] for low symptom management SE (defined as PROMIS T score ≤40) per one unit increased emotional distress. Lack of social support and recent diagnosis were independently associated with low SE.  Conclusion: Latino lupus patients have high illness threat and emotional distress levels along with low SLE management SE despite feeling they understand lupus.  Emotional distress IP is associated with low symptom management SE. Education that impacts emotional distress may improve SE. Recently diagnosed patients and those lacking social support need extra provider support.

Table of Contents

Table of Contents:

                                                                                                                  

Background……………………………………………………………………………...................................…….. 1-17

Methods……………………..……………………………………………………...................................………….. 18-25

Results……………………..………………………………………………................................………………....... 26-30

Discussion…………………………………………………………………………………….................................... 31-39

Future Directions……………………………………………………………………………................................... 39-40

References…………………………………………………………………………………….................................... 41-51

Tables………………………………………………………………………………………....................................... 52-57

Table 1: Sociodemographics of Participants..……………………….……..................................... 52

Table 2: Health and SLE Characteristics of Participants ………………..................................... 52-53

Table 3: BIPQ among Latinos with SLE by Illness Perception Domains.................................. 53

Table 4.1: BIPQ Total Score by Subgroups ….......................................................................... 53-54

Table 4.2: BIPQ Emotional Distress Score by Subgroups ……….............................................. 54-55  

Table 4.3: BIPQ Illness Comprehension Score by Subgroups…............................................... 55

Table 5: Self-Efficacy for Managing Chronic Disease among Latinos with SLE……................ 56

Table 6: Communication with Physicians among Latinos with SLE…………………................. 56

Table 7: Univariate Logistic Regression for BIPQ and Low Symptom Management SE…….... 56

Table 8: Multivariate Logistic Regression for Emotional Distress and Low SE....................... 57

Figures and Figure Legends.....……………………………………………………………….............................. 58-60                 

Figure 1: Conceptual Model of Thesis………………………………………………...........................  58

Figure 2: Figure of Methods…………………………………………………………............................. 59

Figure 3: Graphical Representation of Odds Ratios from Multivariate Regression ............... 60

Appendices …………………………………………………………………………………..................................... 61-63

Appendix A: Overview of Brief Illness Perception and Scoring……………………..................... 61

Appendix B: Self-Efficacy Measure Forms…………………........................................................ 62-63

      

About this Master's Thesis

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School	Rollins School of Public Health
Department	Epidemiology
Subfield / Discipline	Global Epidemiology - MPH & MSPH
Degree	M.P.H.
Submission	Master's Thesis
Language	English
Research Field	Health Sciences, Public Health Health Sciences, Epidemiology Latin American Studies
Parola chiave	Lupus Illness Perceptions Systemic Lupus Erythematosus Self-Management Hispanic Latin America SLE Latino Self-Efficacy Spanish-speakers
Committee Chair / Thesis Advisor	Cristina Drenkard, MD PhD, Emory University

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