Glomerular diseases affect millions worldwide and impose substantial burdens on healthcare systems (1). These conditions can cause significant kidney function decline, leading to chronic kidney disease (CKD) and end-stage kidney disease (ESKD). The most common types of glomerulonephritis vary based on geographical region and age group (2, 3), but several forms are frequently diagnosed worldwide, including IgA nephropathy (IgAN), membranous glomerulonephritis (MN), focal segmental glomerulosclerosis (FSGS). In the United States, glomerulonephritis is estimated to account for about 10 - 15% of all ESKD thereby making it the third leading cause of ESKD (4, 5) with a significant financial burden associated with many of these diseases such as lupus nephritis (LN) (6). The incidence of diabetic nephropathy (DN) is increasing; added to this is the fact the global burden of CKD due to glomerulonephritis has increased by 77% since 1990 with much of this rise occurring in places with low sociodemographic index (7).

Understanding and raising awareness of these diseases is vital, particularly as new treatments and clinical trials offer promising avenues for improved patient care. Raising public awareness and engagement regarding glomerular diseases can promote earlier diagnosis and treatment, enhancing patient outcomes and reducing healthcare burdens. Community engagement can also inspire individuals to participate in clinical trials, which are crucial for advancing new treatments and improving patient care. Public involvement fosters educational initiatives, equipping patients with knowledge about their conditions and treatment options. Recognizing trends in community interest enables healthcare providers and policymakers to allocate resources more efficiently and assists researchers and pharmaceutical companies in designing targeted therapies and conducting relevant clinical trials. Google Trends, the most often used tool, can track changes in search behavior in various conditions, such as COVID (8), musculoskeletal pain (9), benign prostatic hyperplasia (10), urological cancer (11), renal replacement therapy (12, 13), and kidney stones (14).

Glomerular diseases have a profound impact, yet public awareness and interest in these conditions remain poorly understood. This study aims to fill this gap by exploring public engagement in five common glomerular diseases through the analysis of Google Trends data. By examining these patterns, we can pinpoint areas of limited awareness and design focused interventions to enhance education and understanding of these diseases.

In the modern era, the internet has become the dominant source for accessing information, with platforms like Google serving a pivotal role. This widespread reliance on digital resources can often be seen as a reflection of increasing public engagement and curiosity. As individuals seek out more information online, it contributes to enhanced awareness across a wide range of topics. This digital flow of information not only depends individual knowledge but also fosters a more informed society, capable of engaging in more meaningful discussions and informed decision-making.

The search trends for glomerular diseases explored from 2004 to 2024 exhibit distinct patterns, reflecting not only varying levels of public awareness, but also highlighting a discrepancy between search activities and their actual incidence and prevalence. Before beginning the discussion, we want to emphasize that the search terms used in our analysis were in English. As a result, the extracted data may not fully represent global trends. Our findings from English-speaking countries indicate that search interest was predominantly concentrated in the five countries, primarily including the United States, United Kingdom, Canada, and Australia, with the United States consistently ranking as the leading country in search activity. For IgAN, LN, and MN, the trends observed in the United States appeared to align closely with global data. In contrast, search interest for FSGS in the United States exceeded global levels, while interest in DN was slightly lower than global activity. It is important to note that the global data or trends presented in this study should be viewed as a reference or illustrative example. Future research should prioritize adapting search terms to the predominant language of each country to more accurately capture public awareness and interest in specific diseases within individual regions. This approach would provide a more nuanced and accurate understanding of disease-related search behavior globally.

Both global and United States search interest in IgAN has declined over the period, while search activity in other English-speaking countries, such as the United Kingdom, Canada, and Australia, has remained relatively stable. These trends contrast with IgAN’s relatively high incidence and prevalence, as it is the most prevalent form of primary glomerulonephritis worldwide. In Europe, the annual incidence of IgAN is approximately 7.6 per million, with a point prevalence of 25.3 per million (17). Conversely, the incidence in the United States is substantially higher, estimated at 21-22 per million in 2021, with a pooled prevalence ranging between 542 and 627 per million (18). In the United States, search activity for IgAN initially fell but saw a significant resurgence in 2020, gradually returning to prior levels by 2023. Despite recent initiatives to enhance visibility and public health education through social media campaigns and the efforts of patient advocacy organizations such as the IgA Nephropathy Foundation (19), public awareness remains insufficient. In addition, IgAN is more prevalent in Asian population, as evidenced by Japan, where the incidence rate is reported at 45 cases per million population annually (20). This high rate correlates with the peak search activity for IgAN observed in Japan.

DN, the leading cause of CKD and ESKD globally, significantly impacts the diabetic population as a major diabetes complication. The prevalence of DN shows global variation; for instance, a study in Saudi Arabia found a prevalence of 10.8% among type 2 diabetes patients, with differences reflecting age and diabetes duration (21). In contrast, a systematic review and meta-analysis in North America reported a pooled prevalence of 28.2% among diabetic patients, with discrepancies observed across various countries (22). Despite these numbers, search interest in DN has mostly shown a slight decline, although there was a minor uptick between 2016 and 2021. In the United States, the prevalence of DN among adults with diabetes has remained relatively unchanged over the years. An analysis of data from the National Health and Nutrition Examination Surveys (NHANES) from 1988 to 2014 indicated that the prevalence of DN was about 26.2% in the 2009-2014 period, virtually unchanged from 28.4% in 1988-1994 (23). Global data indicates that search activity for DN experienced a slight increase after 2016, following an initial minor decline. In English-speaking countries, including the United States and United Kingdom—where the search term demonstrated the highest popularity—interest in DN remained lower than global levels and has stayed relatively stable over time. These findings highlight the need to enhance patient awareness to bridge the gap between the number of DN patients and public engagement. The American Diabetes Association (ADA) and Kidney Disease: Improving Global Outcomes (KDIGO) emphasize the critical need of screening and managing CKD in diabetic patients to slow its progression and reduce related complications (24). But simultaneously, boosting visibility through social media campaigns, support from patient advocacy groups, and increased educational efforts by healthcare providers is crucial in elevating awareness, enhancing community support, and advancing research for improved and innovative treatments (25).

LN is a common type of secondary glomerulonephritis, especially among women and certain ethnic groups. The American College of Rheumatology (ACR) guidelines report that about 35% of adults with systemic lupus erythematosus (SLE) present with clinical signs of nephritis at diagnosis, and approximately 50-60% develop nephritis within the first decade of the disease (26). A population-based study in the United States recorded an average annual incidence of 10 per million population between 1976 and 2018, with the incidence rising from 7 to 13 per million over this period (27). Similarly, the prevalence of LN rose from 168 per million in 1985 to 212 per million in 2015 (27). Correspondingly, interest in LN, as tracked by Google Trends, has increased both globally and in the United States, particularly after 2021, despite the overall search levels remained low, with the RSI less than 50. This trend suggests that recent public health efforts and media exposure have effectively heightened awareness of this condition. In 2021, the American Kidney Found, in collaboration with GSK, launched a campaign to educate the public about LN (28). The initiative focuses on improving recognition of its signs, symptoms, and treatments, aiming to facilitate early detection and better disease management. Research highlights the importance of culturally tailored education in raising awareness, addressing stigma, and combating misinformation, particularly among high-risk groups like Afro-Americans (29). The CDC and Lupus Foundation of America’s National Public Health Agenda for Lupus prioritizes strategies to enhance understanding of lupus, stressing early diagnosis and treatment (30). To further these efforts, the Lupus Foundation of America has revamped its awareness campaign, featuring real-life stories of women with lupus to empower at-risk groups, especially Afro-Americans and Hispanic/Latina women. Public health authorities should continue to leverage these approaches to maintain and expand awareness levels, ensuring early diagnosis and effective disease management remain a priority (31).

FSGS are common kidney diseases that can lead to ESKD if left untreated. The incidence and prevalence of FSGS vary across populations and regions. While there has been an upward trend in the prevalence of FSGS in Western countries, the trends are inconsistent t in Europe and Asia, and there is a decreasing trend in Far Eastern countries like China (32). In the United States, the incidence of FSGS is approximately 7 per million population annually (33). Among United States veterans, the average annual incidence and prevalence during 2000-2020 were 19.6 and 164.7 per million veterans, respectively (34). Our data shows that both global and United States search interest in FSGS has experienced a slight decline over time. In other English-speaking countries, such as the United Kingdom, Canada, and Australia, engagement levels remained very low, though their trends have been relatively stable. Although new treatments and clinical trials offer hope, the insufficient public awareness and engagement could impede efforts to improve patient outcomes (35). Additionally, there is a notable deficiency in support systems, educational materials, and patient advocacy groups specifically targeting FSGS. Elevating public health priorities in these areas could foster the development and distribution of such resources, thereby improving management strategies and the quality of life for patients with FSGS and their families.

While the overall prevalence of MN is low, it remains the predominant cause of nephrotic syndrome in adults in certain regions. The incidence of primary MN is stable but less frequent compared to FSGS or IgAN. The incidence of secondary MN, which may be associated with malignancies, infections, or autoimmune conditions, differs geographically. A systematic review reported the global incidence of MN is 10-12 per million per year among adults (36). Specifically, in Olmsted County, Minnesota, USA, the annual incidence rate of MN was documented at 10 per million between 1994 and 2003 (37). Despite these statistics, public awareness and interest in MN are relatively low both globally and in English-speaking countries such as the United States, United Kingdom, Canada, India, and Australia where the search term demonstrated the highest popularity. In the United Kingdom, the prevalence has been reported at 199 cases per million (38). The United Kingdom Kidney Association’s MN Rare Disease Group in United Kingdom plays a crucial role in raising awareness and supporting MN patients (39). This organization empower patients by offering information and resources on the disease, including symptoms and treatment options. Personal stories and testimonials shared on the United Kingdom Kidney Association’s website personalize the condition and highlight the daily challenges of those affected by MN. Furthermore, international collaborations initiated by the MN Rare Disease Group are vital for advancing research and the development of new treatments (39–41). Such efforts also potentially increase patient access to innovative therapies.

We acknowledge the limitations of this study. First, the English terms in Google Trends queries used did not reflect search behavior in non-English speaking populations. While English is standard in the medical field, general population searches often use native languages, leading to potential bias in non-English speaking regions. This limits the value of aggregated data for cross-country comparisons and trends outside English-speaking areas. Again, future research should incorporate multilingual search terms to capture linguistic diversity or focus on the predominant language of each country or region. This approach would help minimize bias and enhance the accuracy of interpreting population interest trends within specific regions. Second, the most prevalent terms associated with each disease were used to analyze public interest via Google Trends. However, we recognize that the choice of terminology can significantly influence the outcomes due to the use of synonyms, acronyms, and the naming of disease subtypes. The influence on results can also vary significantly when using different categorizations in Google Trends, even if the terminology remains the same. For instance, “focal segmental glomerulosclerosis” not only appears under various categorizations like Syndrome, Search Terms, and Topics, but also as Disease. It includes well-established acronyms like FSGS and encompasses subtypes such as APOL1-associated and HIV-associated nephropathy. This highlights the complexity and importance of carefully selecting search terms and their categorizations in the medical field. To thoroughly assess search activity in specific diseases, further detailed studies should incorporate a broad spectrum of terminologies and account for all disease subtypes. Moreover, this study does not consider regional variations or differences in information-seeking behaviors, particularly among young adults heavily influenced by social media platforms (42, 43). These variations may substantially impact the generalizability of the findings. Additionally, we were unable to thoroughly assess specific factors or analyze predefined subgroups that could affect the robustness of the data, such as age, gender, socioeconomic status, and potential barriers to internet access. Furthermore, while search trends can reflect public awareness or engagement, they do not necessarily mirror the actual epidemiological data of these conditions. The potential correlation between Google Trends data and the incidence and prevalence of glomerular diseases over time has not been unexplored due to the lack of original and reliable longitudinal data for comparison. While some studies demonstrate a correlation statistic greater than 0.7 when comparing Google Trends data to real-world epidemiology, discrepancies remain that necessitate cautious interpretation of these findings. This suggests that relying solely on Google Trends for assessing public interest presents certain biases and limitations. Notably, the digital landscape of health information-seeking behavior can be influenced by external factors, including modifications to search engine algorithms. Therefore, it is crucial to enhance Google Trends data with additional sources such as other platforms or channels, surveys, interviews, or clinical data to gain a comprehensive understanding of public interest in glomerular diseases. In addition, search activity alone does not provide a comprehensive measure of public engagement or the quality of the information accessed. Evaluating the knowledge acquisition of the general population regarding the causes, symptoms, and treatments of glomerular disease would be a valuable direction for future research. Such studies could inform the development of more effective educational media, tools, and communication strategies to improve patient understanding and engagement.

In summary, despite advancements in treatments and an increase in clinical trials for glomerular diseases, our analysis of Google Trends data indicates that public interest, especially in conditions like MN and FSGS, has not significantly grown, at least in English-speaking countries. Given the inherent limitations and potential biases of Google Trends, its reliability should be validated against reference data sources. Moreover, future analysis should prioritize search terms in the predominant language of each country. Google Trends data should be viewed as a supplemental tool and integrated with other information sources to enable more accurate and comprehensive conclusions.