Lost in Translation: Teenagers’ Understanding of Common Medical Jargon

Medical jargon can be defined as words or phrases used by health care professionals that are often misunderstood by people outside of that group.¹ These terms can be subdivided into multiple categories to provide further classification. Our framework includes 7 categories of medical terminology: (1) technical terminology (eg, disease names or procedures), (2) acronyms/abbreviations (eg, NPO [nil per os, or nothing by mouth] or EKG), (3) medical vernacular (words that may be familiar but are rarely understood, such as bolus or sepsis), (4) unnecessary synonyms (eg, erythema instead of red or upper extremity instead of arm), (5) medicalized English (words like negative or impressive, which have well-understood meanings in everyday usage but a different meaning when used in a medical context), (6) euphemisms (eg, spot on an x-ray), and (7) judgmental jargon (words or phrases that may be perceived as judgmental, such as chief complaint or non-compliant).¹ 

In spite of their best intentions to communicate clearly, clinicians regularly use medical jargon within these categories when disclosing test results, having difficult conversations, and providing care recommendations to patients and their families.^1–6 Researchers have referred to this as “jargon oblivion,” a disconnect between clinicians’ perceptions that they are communicating without jargon and their patients’ lack of understanding of many of the words and phrases used.¹ Prior studies have also demonstrated that the majority of adults fail to understand their doctors’ explanations when they include medical jargon.^4–10 Many perceive medical jargon as too technical, whether encountered verbally in a clinical setting or read in written documentation in their medical record.^3–5,9 Additionally, patients view health care providers who use jargon as unapproachable or uncaring, with some believing that physicians are trying to make themselves feel important or avoid addressing questions directly.^8,9 In comparison, physicians who use plain language have been seen as approachable, caring, and good communicators.^8–10 Health care providers may intend to minimize jargon and use plain language; yet, when unaware of what terminology their patients adequately understand, they may continue to use phrases that lead to confusion.^11–15 While data exist from previous studies assessing the understanding of adults, to our knowledge, there has yet to be any work focusing on how well teenagers (teens) understand medical jargon.^{2–11,13–15} As teens are increasingly expected to take ownership of their health and are often encouraged to be seen by their pediatrician privately for at least a portion of the discussion, it is essential that they have an understanding of the conversations about their health. Accordingly, we aimed to characterize teens’ understanding of common medical jargon terms and phrases. Additionally, we sought to understand whether demographic factors played a role in teens’ understanding of medical phrases, given that increasing age has been correlated in adult studies with increasing health care utilization and likely increased exposure to medical jargon.¹⁶ We hypothesized that many of these phrases would be poorly understood by teens.

The methods from this cross-sectional study are reported using the Strengthening the Reporting of Observational Studies in Epidemiology reporting guidelines.¹⁷ This cross-sectional, survey-based study was reviewed and approved by the university’s Institutional Review Board (STUDY00019173).

A prior survey developed by members of this author group to assess adult comprehension was administered to assess teens’ comprehension of typical medical jargon phrases encountered in a health care setting.² The survey included demographic questions (age and gender) and a combination of 13 multiple-choice and open-ended questions assessing participants’ understanding of common phrases a doctor might say or write. Respondents were asked to indicate if certain multiple-choice statements represented good news or bad news or if they were unsure. For free-text and short-answer questions, respondents were asked to indicate their understanding of what the doctor meant by a particular phrase.

The survey was initially developed with questions designed to capture terminology or phrases that the interdisciplinary author group had come across regularly within their scope of practice. Questions included terms representing multiple, distinct categories of medical jargon based on a framework of 7 categories of jargon published by members of this author group.¹ For example, several questions included phrases that fall into the category of medicalized English: words or phrases that have a well-understood meaning in a nonmedical context but a different meaning within medicine. Examples of this included “occult infection,” “bugs in the urine,” “your chest x-ray was unremarkable,” “the tumor is progressing,” or “positive nodes.”^1,2 Two phrases included paired questions with jargon and non-jargon terms at separate points in the survey to assess understanding of alternative phrasings, such as “your blood test shows me you do not have an infection in your blood” and “your blood culture was negative.” (Full survey available in the Supplemental Information).

During the 2023 Minnesota State Fair, teens were recruited and voluntarily participated in an anonymous survey while visiting the university’s research facility. This building sees annual foot traffic of 50 000 to 60 000 individuals over the course of the state fair; in 2023, more than 17 000 fairgoers participated in one or more of 47 research projects.^18,19 This mirrored the data collection methods the author team has used for previous studies of medical jargon in the adult population as a means of surveying a cross-section of the statewide public.^2,9,20,21 

Individuals were eligible for this study if they were aged between 13 and 17 years, had no formal health care training, and were comfortable completing a written survey in English on an iPad. All eligible individuals who entered the research building and approached our booth during the 3 data collection days were offered participation. Based on convenience sampling, 71 participants opted in, were confirmed eligible, and completed the survey. Respondents were provided with an information form describing the objectives, risks, and benefits of their involvement in the study, with an emphasis on voluntary participation. As approved by the Institutional Review Board, teens aged 13 to 15 years verbally assented to participate with simultaneous parental consent, and teens aged 16 to 17 years verbally consented to participate. Participants received a string backpack as a token gift for volunteering, which was funded through an internal research grant.

All participants completed a REDCap survey on an iPad.²² Individuals could stop the survey at any time and still receive the backpack.

Descriptive statistics were used to summarize the demographic and survey responses; no formal sample size or power calculation was conducted given the cross-sectional nature of this study. Subsequently, responses to both multiple-choice and free-text questions were coded as correct, partially correct, or incorrect by 2 independent researchers, with a third researcher reconciling any discrepancies.²³ McNemar’s test was used to compare correct responses between certain questions with alternative terminology. Logistic regression models were used to examine the association between demographics (age and gender) and correct responses. Adjusted odds ratios and 95% CIs were reported from these models. P values less than .05 were considered statistically significant. SAS V9.4 (SAS Institute Inc) was used for the analysis.

All teenagers who entered the research building and approached our research booth were surveyed. Seventy-one teenagers consented, met eligibility criteria, and participated in the survey, with a mean age of 15 ± 1.5 years; 55% identified as female, 42% as male, and 3% as nonbinary. All participants completed the entire survey.

Overall, teens demonstrated varying understanding of many of the phrases evaluated (Table 1). With multiple-choice questions, most (69; 97%) knew that “negative” cancer screening results meant they did not have cancer, but fewer understood that “the tumor is progressing” or having “positive nodes” in the context of cancer was unwelcome news (49; 69% and 38; 54%, respectively). A majority (46; 65%) understood that an “unremarkable” chest x-ray was generally considered good news, but few (12; 17%) realized that having an “impressive” chest x-ray was typically a statement of concern. Twenty-four respondents (34%) understood that “your neuro exam is grossly intact” was good news. When phrased in lay terms, more teens (63; 89%) understood “your blood test shows me you do not have an infection in your blood” as good news, rather than “your blood culture was negative” (37; 52%, P value < .001).

In comparison, for free-text responses, 7 teens (10%) understood that “bugs in the urine” conveyed a urinary tract infection, with 37% proposing a literal interpretation of insects in the urine. None of the teenagers knew what an “occult infection” meant, with a few believing that it was related to the eyes (4%) or death (1%). None knew the meaning of “febrile,” with 13% believing that the term was related to fertility or sexual activity (Table 2). When provided alternate phrasing, more (34; 48%) also understood “you are to have nothing by mouth after 4 PM” compared to “you will need to be NPO at 8 AM” (0; 0%, P value < .001). Furthermore, in multivariable logistic regression models, 2 phrases demonstrated an increased understanding with age: an impressive chest x-ray (P value = .02) and a negative blood culture (P value = .009). More females understood the phrase “nothing by mouth” (P value = 0.02) than males (Table 1).

To our knowledge, this is the first study to evaluate teenagers’ understanding of medical jargon and one of the few that assesses comprehension of medical jargon outside of the health care setting.^{2–9,13–15} In this cross-sectional study, we found that teenagers commonly misunderstood terms and phrases frequently used in a medical setting.

Notably, teenagers showed a poor understanding of many types of jargon illustrated in our previously described framework.¹ Specifically, words and phrases in the medicalized English category were a frequent cause of low comprehension and confusion among teenagers in this study, such as “occult infection,” “grossly intact,” “bugs in the urine,” “positive nodes,” or “impressive.” These findings are consistent with prior studies on adult patients and public survey populations in which respondents may have been familiar with the definition of a word in everyday use but misapplied that definition in the medical context.^2,5,24 Incorrect interpretations of these phrases can also lead to the opposite of the intended meaning. For example, misinterpreting positive lymph nodes or the fact that a tumor is progressing as good news can have detrimental consequences; in lay language, positive and progress are usually used to indicate something good or moving in the right direction.

When comparing this cohort of 71 teenagers to the 116 adults previously administered the identical written survey by Gotlieb et al (2022), teens demonstrated a lower understanding of medical jargon.² Notably, 26% of adults understood “bugs in the urine” compared to 10% of teens, and 10% of adults understood “febrile” compared to 0% of teenagers. Yet, 97% of teens and 96% adults understood that “negative” cancer screening results meant they did not have cancer. Only 69% of teenagers knew that “the tumor is progressing” was unwelcome news compared to 79% of adults. Less than half of teenagers and adults knew that a “grossly intact” neurologic exam was good news. None of the adults or teens knew the meaning of “occult infection,” with many adults believing that it was related to a curse. Both teenagers and adults demonstrated a better understanding of plain language phrases than their jargon-based alternatives, but only 48% of teens and 74% of adults understood “you are to have nothing by mouth.”² 

Notably, the age differences (a mean age of 15 years vs a mean age of 42 years) between the teens and adults surveyed in these studies may explain some of the discrepancies in understanding, given that increased age likely provides more exposure to medical jargon. Perhaps not surprisingly, both teenagers and adults demonstrated better comprehension of many terms with increasing age. However, like adults, teenagers’ understanding did not demonstrate a significant difference by gender. This emphasizes the importance of minimizing medical jargon use with all patient populations, unrelated to their frequency of health care utilization. It is especially important to do so with teenagers as they gain increased autonomy over their health care decisions and participate in more health care conversations.

We found that teenagers understood the non-jargon version of medical phrases better than their jargon-based descriptions, similar to adult populations studied previously.^2,21 Yet, even when simplified, many non-jargon phrases remain confusing for teenagers. For example, while “nothing by mouth” was significantly better understood than “NPO,” the plainer version was still understood correctly by less than half of teenagers. Comparatively, adults only did slightly better; 3 in 4 adults correctly understood what the phrase “nothing by mouth” meant.² Clinicians are likely trying to avoid jargon when they convert the Latin acronym NPO to the letter-by-letter English translation when saying “nothing by mouth.” However, given that this is not the typical way people discuss eating and drinking (ie, “taking things by mouth”), it is not surprising that more than half of teenagers and one-quarter of adults still do not understand what this means. Identifying these areas of misunderstanding is important to create optimal communication, as clinicians may not recognize that some of the words and phrases they use are, in fact, jargon.

This study had several limitations. Notably, the sample size was small and sampled within Minnesota, limiting the generalizability of the data to all adolescents. While participation was possible for all teenagers attending the fair, there may have been a natural selection bias for individuals who visited a university research facility at a state fair. As some of the questions were multiple choice, respondents may have also made educated guesses based on context while completing the survey, thus not reflecting their true understanding. Furthermore, teenagers’ educational background or their degree of exposure to health care was not assessed, which likely influenced responses as well. We aimed to minimize this with an option to indicate that the respondent did not know the answer, but it is possible the desire to “get it right” may have led to guessing. Finally, the survey was only administered in English, which limited participant eligibility and the ability to extrapolate results to teenagers whose primary language was not English.

Health care professionals should minimize their use of medical jargon, as it remains a common source of confusion for patients and families. Frequently used jargon phrases, especially medicalized English terms, are even more poorly understood by teenagers when compared to adult data. Future research is warranted to further characterize the general public’s perception and understanding of medical jargon, especially among teenagers and children. Future work should also focus on strategies for health care providers to continue reducing their use of medical jargon by assessing suitable alternative phrases that may enhance patient understanding.

We thank the University of Minnesota for its support in conducting our research related to the effects of medical jargon on patients and families. Thanks also to the present and past members of the Clear Clinical Communication work group.

NC

not calculable

NPO

nil per os (nothing by mouth)

OR

odds ratio