What question did this study set out to answer?

This research aims to determine the relationship between educational attainment and the timing of diagnosis and treatment uptake in lymphangioleiomyomatosis (LAM).

February 25, 2026Orphanet Journal of Rare Diseases0 citationsOpen Access

Educational attainment of individuals with lymphangioleiomyomatosis is a determinant of timely diagnosis and treatment uptake

MHMarina K. Holz

Key Points

This research aims to determine the relationship between educational attainment and the timing of diagnosis and treatment uptake in lymphangioleiomyomatosis (LAM).
Data analyzed from the LAM Patient Research Priorities (LAM-PREP) study with 566 participants providing educational data.
Cross-sectional survey design to assess diagnostic timing and treatment utilization.
Multiple regression and logistic regression analyses to evaluate the impact of education on health outcomes, controlling for age and disease severity.
Patients with bachelor's degrees were diagnosed 4.7 years earlier than those without (p = 0.001).
Only 53% of patients reported using mTOR inhibitors for treatment.
Patients with bachelor's degrees had 1.75 times higher odds of using mTOR inhibitors (p = 0.013), while those with graduate degrees had 2.21 times higher odds (p = 0.001).

Abstract

Lymphangioleiomyomatosis (LAM) is a rare, progressive lung disease predominantly affecting women. Despite the availability of FDA-approved treatments, mTOR inhibitors like sirolimus or everolimus, significant disparities persist in early diagnosis, treatment utilization, and patient outcomes. The goal of this study is to examine how key socioeconomic factors affect diagnostic delay and treatment uptake in LAM. It was hypothesized that higher educational attainment is associated with earlier diagnosis and greater likelihood of treatment utilization due to its association with health literacy. To investigate the impact of socioeconomic factors, we analyzed data from the LAM Patient Research Priorities (LAM-PREP) study, a cross-sectional survey of LAM patients representing ~ 20% of known cases globally. 624 participants completed the survey and 566 provided complete education data and were therefore included in analyses. Multiple regression and logistic regression analyses were performed to examine the associations between educational attainment and diagnostic timing, as well as treatment utilization, controlling for age and disease severity. Among 566 patients with complete educational data, there was a 10-year average delay between self-reported symptom onset (mean age 25.0 ± 12.7 years) and diagnosis (mean age 35.1 ± 13.5 years). Educational attainment emerged as a significant predictor of diagnostic delay. Patients with bachelor’s degrees were diagnosed 4.7 years earlier than those without a bachelor’s degree (95% CI: -7.4 to -2.0, p = 0.001). Only 53% of patients reported using mTOR inhibitors. Educational attainment was a significant predictor of treatment utilization, with patients holding a bachelor’s degree having 1.75 times higher adjusted odds of using mTOR inhibitors (AOR 1.75, 95% CI: 1.13–2.73, p = 0.013), and those with graduate degrees having 2.21 times higher odds (AOR 2.21, 95% CI: 1.41–3.45, p = 0.001). Educational attainment was significantly associated with both the timing of diagnosis and the likelihood of treatment uptake in LAM patients. These findings highlight the need for targeted interventions to address healthcare disparities in LAM care.

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