Inquiry in Motion

Author: Kari Fu

Abstract

Disease names may influence how people understand medical conditions. This study examined whether three different terms for lupus affected perceptions of the disease. Fifty-seven participants were randomly assigned to complete one of three questionnaires using 紅斑狼瘡 (Chinese medical name), Lupus, or 自體免疫疾病 (Autoimmune Disorder), with 19 participants per group. Responses were compared using percentages. Participants shown the Chinese name were more likely to associate the condition with contagiousness (68.4%), animal imagery (73.7%), and danger (78.9%) than those shown the other names. After receiving a short medical explanation, 68.4% of the Chinese-name group reported a noticeable change in impression, compared with 52.6% of the Lupus group and 21.1% of the Autoimmune Disorder group. These findings suggest that disease terminology may influence initial misconceptions and that clear medical explanations may help address them.

Keywords: Lupus, disease naming, medical terminology, stigma, health communication

Introduction

Medical names help identify diseases, but their wording may also influence how people understand them. Previous research has found that medical terminology can affect perceptions of illness severity (Young et al., 2008).

Lupus is a chronic autoimmune disease that can affect the skin, joints, kidneys, and other organs. Although it can cause serious complications, it is not contagious (CDC, 2024).

The Chinese name for lupus, 紅斑狼瘡, contains characters referring to redness, wolves, and sores. These words may suggest animal injuries, skin damage, or infection to people unfamiliar with the disease. In comparison, Lupus may be less descriptive to Chinese speakers, while 自體免疫疾病 (Autoimmune Disorder) directly identifies a medical category.

This study investigated whether these three terms influenced participants’ understanding and associations with lupus. It was hypothesized that the Chinese name would produce the most negative associations, followed by Lupus, while Autoimmune Disorder would produce fewer misconceptions.

Methods

Study Design and Participants

Fifty-seven participants were randomly assigned to three groups of 19. Each participant completed only one questionnaire, which presented one of three disease names: 紅斑狼瘡, Lupus, or 自體免疫疾病.

Questionnaire Design

The questionnaires asked participants to identify the type of disease and select associations involving contagiousness, skin damage, animals, and danger. Some questions allowed multiple selections.

After answering the initial questions, participants received a short explanation stating that lupus is an autoimmune disease and is not contagious. They then rated how much the information changed their impression, from “Changed a lot” to “Not at all.”

Data Analysis

Responses were summarized using counts and percentages. Percentages were calculated by dividing each response count by the 19 participants in its group and multiplying by 100. The three groups were compared descriptively.

Results

Table 1. Initial disease classifications and associations

Response	Chinese name	Lupus	Autoimmune
Identified as autoimmune	3 (15.8%)	6 (31.6%)	17 (89.5%)
Contagious/infectious	13 (68.4%)	6 (31.6%)	3 (15.8%)
Skin damage	13 (68.4%)	5 (26.3%)	2 (10.5%)
Animal imagery	14 (73.7%)	3 (15.8%)	1 (5.3%)
Dangerous	15 (78.9%)	11 (57.9%)	4 (21.1%)

Note: Each group contained 19 participants. Multiple selections were permitted for some questions.

Participants shown the Chinese name reported the highest rates of infectious-disease associations, animal imagery, skin damage, and danger. Only 15.8% identified the condition as autoimmune, compared with 89.5% in the Autoimmune Disorder group.

Table 2. Changes in impression after educational explanation

Response	Chinese name	Lupus	Autoimmune
Changed a lot	7	4	1
Changed somewhat	6	6	3
Changed a little	3	5	5
Not really	2	3	4
Not at all	1	1	6
Total	19	19	19

A noticeable change in impression (“Changed a lot” or “Changed somewhat”) was reported by 68.4% of the Chinese-name group, 52.6% of the Lupus group, and 21.1% of the Autoimmune Disorder group.

Discussion

The findings suggest that disease names may influence people’s initial understanding of medical conditions. Participants shown 紅斑狼瘡 were more likely to associate lupus with infection, skin damage, animals, and danger. The characters 狼 (wolf) and 瘡 (sores) may have contributed to these impressions.

The higher rate of contagiousness misconceptions is particularly important because lupus is not infectious. Misunderstandings about transmission could contribute to unnecessary fear or avoidance of people living with the disease. Previous research has shown that disease-related language and social perceptions can contribute to stigma (Best & Arseniev-Koehler, 2023).

Participants shown Autoimmune Disorder generally demonstrated more accurate disease classification and fewer negative associations. However, this term describes a broad medical category rather than lupus specifically, which may partly explain the difference.

The educational explanation also appeared useful. Participants shown the Chinese name were most likely to report changing their impressions, suggesting that providing clear medical information may help people reconsider their assumptions.

Several limitations should be considered. The study included only 19 participants per group, and results may not represent the broader population. Participants’ prior medical knowledge and language proficiency may have affected their responses. The questionnaire measured associations and self-reported changes rather than actual discriminatory behavior or objectively measured learning. Because only descriptive statistics were used, the study cannot establish statistical significance.

Conclusion

This study found that participants’ perceptions of lupus differed depending on the disease name presented. The Chinese medical name was associated with more misconceptions and negative imagery, while Autoimmune Disorder was associated with greater recognition of the disease category.

Participants shown the Chinese name also reported the greatest changes in impression after receiving educational information.

These findings suggest that medical terminology matters in health communication. Providing clear explanations alongside disease names may help reduce misunderstandings and potentially address disease-related stigma.

References

1. Centers for Disease Control and Prevention. (2024). Lupus basics. https://www.cdc.gov/lupus/about/index.html
2. Young, M. E., Norman, G. R., & Humphreys, K. R. (2008). The role of medical language in changing public perceptions of illness. PLOS ONE, 3(12), e3875. https://doi.org/10.1371/journal.pone.0003875
3. Best, R. K., & Arseniev-Koehler, A. (2023). The stigma of diseases: Unequal burden, uneven decline. American Sociological Review, 88(5). https://doi.org/10.1177/00031224231197436