The Evaluation of Medical Mistrust in Adolescents and Young Adults (AYAs) with Leukemia and Lymphoma: A Preliminary Report

Introduction

Medical mistrust is the unease or suspicion that people have towards healthcare, and it has been linked to health behaviors like medication nonadherence and poorer health care utilization (Sanford & Clifton, 2022; Griffith, et al., 2020). In addition, adolescents and young adults (AYAs) with leukemia and lymphoma have been shown to be less adherent to various cancer treatments compared to younger patients (Butow, et al., 2010). Medical mistrust, which is an important predictor of adherence to treatment in adults, has not been studied in AYAs with leukemia and lymphoma to our knowledge. This abstract presents the preliminary results of assessing medical mistrust within this unique population who may have reasons to be mistrustful both based on their unique age-related healthcare experiences and experiences of racism/oppression based on their race, ethnicity, and socioeconomic factors.

Methods

Participants included in an ongoing survey study are AYAs ages 14-29 with leukemia or lymphoma on oral chemotherapy. It is being conducted in Chicago, IL with recruitment in two high volume cancer centers and via social media. Medical mistrust was evaluated using the 12-item Group Based Medical Mistrust Scale (GBMMS) created by Hayley Thompson, PhD (Thompson, et al., 2004). This measure, which has been validated in healthy AYAs (Knopf, et al., 2021), allows the researcher to select the referent group of interest (e.g., asking about mistrust based on race/ethnicity, or other factors). In this study, we opted to administer these items twice: first asking AYAs about their mistrust based on AYA age and then again based on their race/ethnicity. Descriptive statistics, t-tests, and correlations were used for analysis due to small sample size, n=18.

Results

Recruitment is ongoing, and current demographics for the 18 current participants include: 56% of a minoritized race or ethnicity (e.g., Black, Hispanic, Asian, or Mixed Race), 54% of 12 participants are considered “low income” or below the poverty line based on 2024 government values (5 participants information unavailable to calculate), 50% female, 39% had a preferred spoken language other than English at home, and 33% self classified as having a disability.

Overall GBMMS scores (inclusive of the full sample) in regards to collectively thinking about their age group showed a mean of 22 with a range of 13-38 (minimum score is 12 and maximum score is 60). Furthermore, GBMMS scores about their race/ethnicity showed a mean of 20 with a range of 12-34 (which was lower than the validation study focused on breast cancer screening in older adults, M=28) (Thompson, et al. 2004). These two GBMMS scores were moderately correlated at 0.695 with a p= 0.001. In addition, we evaluated if mistrust on both measures were different based on race and ethnicity (coded minoritized vs. not) via a t-test. While not statistically significantly different, there was a trend that minoritized AYAs are reporting higher mistrust scores on both measures (M GBMMS for race/ethnicity=22 for minoritized AYAs vs. 17 for non-Hispanic white AYAs; M GBMMS for age=24 for minoritized AYAs vs. 21 for non-Hispanic white). When we evaluated the correlation between both types of GBMMS scores among minoritized AYAs only, scores continued to be correlated at 0.899, p< 0.001. Whereas for white non-Hospanic AYAs, the two GBMMS scores were not correlated.

Conclusions

To our knowledge, research has yet to evaluate experiences of medical mistrust with AYAs with cancer, who may have reasons to be mistrustful both based on their unique age-related healthcare experiences, as well as, personal and systemic experiences of racism/oppression. These are preliminary results of an ongoing study in order to fully understand medical mistrust in this population, however, we are observing a trend that minoritized AYAs are showing higher scores of medical mistrust both based on their race/ethnicity and their age. It is important to understand this because it can significantly impact their experiences with cancer care delivery (Fiala, 2023). With a larger sample, this study plans to evaluate the relationship between medical mistrust and self-reported and electronically-monitored oral chemotherapy adherence. Ultimately, addressing and mitigating mistrust could lead to better patient-clinician communication, increased participation in clinical trials, and improved long-term survival rates for an AYA population.

No relevant conflicts of interest to declare.