Which Chemotherapy-Related Terms Were Difficult for Cancer Patients, and Who Would Have the Most Difficulties?
Article information
Abstract
Purpose
This cross-sectional study aimed to examine which chemotherapy (CTx) terms were most difficult to understand for cancer patients and identify vulnerable patient populations who might need extra support to understand the terms.
Materials and Methods
We listed 56 CTx-related terms based on the experts’ review, then 300 cancer patients and their caregivers completed a questionnaire that assessed literacy in CTx terms (LCT), functional health literacy, and empowerment. Descriptive analysis was performed to examine which CTx-related terms were most difficult for them. Logistic regression analyses were performed to identify factors associated with LCT level.
Results
Of the total 300 people, 162 (54.0%) were in the low-scoring group in LCT. Low-scoring group had a higher proportion of males, lower monthly income, and lived at the province, compared to the high scoring group. The participants tended to have difficulties in understanding terms related to blood count, risk of infection, and symptoms written in Sino-Korean. In the multivariable logistic regression, male participants (adjusted odds ratio [aOR], 2.59; 95% confidence interval [CI], 1.48 to 4.62), those with no cancer-related information-seeking (aOR, 4.32; 95% CI, 1.75 to 12.33), and those with low empowerment (aOR, 3.07; 95% CI, 1.83 to 5.23) were more likely to have a low level of LCT.
Conclusion
There were still linguistic health literacy challenges faced by cancer patients and their caregivers, specifically in understanding chemotherapy-related terms. Minimizing medical jargon and Sino-Korean terms and empowering patients to be ready for treatment are necessary.
Introduction
Ambulatory chemotherapy settings have become more common, and empowering patients and their caregivers to have self-management skills has become more important [1,2]. The American Society of Clinical Oncology (ASCO) recommends healthcare professionals to provide cancer patients with chemotherapy (CTx)-related education before commencing CTx [3]. These education programs aim to help patients to understand the basic mechanism of CTx and learn how to manage the various symptoms induced by CTx [4,5]. Many hospitals provide cancer patients and their caregivers with regular education and educational materials [6].
However, most cancer patients still have difficulties understanding the educational materials as many use medical terms [7]. In a cross-sectional study with 95 breast cancer patients, 20% of them correctly defined “Chemotherapy” [8,9]. In another study with 527 breast cancer patients, about 60% of them did not know what “Neoplasm” is, one-third had difficulty understanding written information, and half needed help reading hospital materials [8,9]. An individual’s understanding of medical terms is fundamental to understanding the nature of the disease, treatment process, and related symptoms [8,9]. Studies presented that a poor understanding of medical terms was potentially associated with performing inappropriate self-management [10,11]. In addition, those who had a poor understanding were more likely to have more treatment-related symptoms and hospitalization events [12,13]. Therefore, healthcare professionals are trying to reduce the use of medical terms or to elaborate the meaning of medical terms in routine clinical practice. However, they often overlook their use of jargon and have difficulties in explaining the terms to patients in an easy-to-understand manner [14-16].
To improve patients’ understanding of medical terms, more strategic planning is necessary for patients’ education. Specifically, it is crucial to document “must-know” medical terms and develop education or information delivery methods. Previous studies determined which pathologic terms such as “Palliative,” “Curative,” “Radiation,” “Blood count,” “Risk of infection,” and “Toxicity” are difficult for cancer patients [14,15]. However, CTx-related education includes teaching patients about cancer pathology, symptom management, and precautions in daily living during CTx [17]. Considering the contents of CTx-related education, it needs to inclusively address how well cancer patients understand the medical terms routinely used in the educational materials [8]. Therefore, we extracted medical terms from a CTx-related educational material routinely used in a hospital and examined which terms were most difficult to understand for cancer patients. In addition, we also identified vulnerable patient populations who might need extra support to understand the terms.
Materials and Methods
1. Study participants
This is a cross-sectional study conducted at the Cancer Education Center of the Samsung Medical Center in Seoul, Korea, from October to December 2022. Cancer patients or their caregivers aged 20 years old or older and those with the ability to read and understand Korean texts were eligible for the study and recruited. Cancer patients with a life expectancy of less than 6 months were excluded. Researchers explained the study to those eligible for the study and asked them to participate. Written informed consent was obtained directly from all participants. Among the 538 people we contacted, 319 (59.3%) consented to participate in the study. Excluding the 19 people who did not complete the survey, 300 people (Npatients=181, Ncaregivers=191) were finally included in the analysis.
2. Measurement
All participants were asked to complete a questionnaire to assess their literacy in CTx terms (LCT), functional health literacy, and empowerment. We hypothesized that better LCT is positively associated with better functional health literacy and greater empowerment toward one’s own health. The questionnaire consisted of 94 questions and took about 15 to 20 minutes to complete per person.
To assess LCT, we extracted 636 terms from “Understanding Chemotherapy,” an official booklet that is routinely used in the Cancer Education Center. For the extraction process, we utilized “KoNLP,” a Korean natural language processing package in Python. During the selection process, we first removed synonyms through review by the research team. Subsequently, 15 advanced oncology practice nurses in charge of CTx education and consultation reviewed 610 terms and determined which should be included in the corpus to enhance patient understanding. Additionally, we asked them to rate the difficulty (level 1=easy, level 2=normal, level 3=difficult) of each selected term. Finally, we confirmed 56 terms (15 in level 3, 29 in level 2, 12 in level 1), reviewing the terms over 80% in the agreement of the nurses. According to guidance regarding the reporting of the Delphi survey, consensus is determined if 80% or more of the panelist agree [18,19]. We asked the study participants to answer whether they knew each term and whether they could explain it to others correctly. The LCT score ranged from 0 to 115, which was calculated by weighting from 1 to 3 depending on the difficulty level of each term.
We used the Short Form of the Korean Functional Health Literacy Test (S-KHLT) to assess functional health literacy. S-KHLT is a valid and reliable 8-item measure that assesses “reading” (4 items) and “numeracy” (4 items) skills [20]. All items are open-ended questions. Those who score less than 6 out of 8 are considered to have a limited literacy level.
To assess empowerment, we used the empowerment scale developed by Shin and Park [21]. This consists of 30 items that include “intrapersonal factor” (14 items), “interactional factor” (8 items), and “behavioral factor” (8 items) [21]. Considering the original scale is designed for breast cancer patients, we changed some questions to be more gender-neutral. The response consisted of a 5-point Likert scale ranging from 5 “strongly agree” to 1 “strongly disagree.” The distribution of scores was from a minimum of 30 points to a maximum of 150 points and was calculated as a total score, with the higher the score, the higher the level of empowerment.
Lastly, we collected information on participants’ sex, age, educational level, monthly household income, residential area, marital status, occupation, and the number of comorbidities. We asked cancer patients their type of cancer, date of diagnosis, and treatment history. In addition, all participants were asked to answer whether they had sought cancer-related information before the survey.
3. Statistical analysis
Descriptive analysis was performed to examine which chemotherapy-related terms were most difficult for cancer patients and their caregivers. They were then divided into two groups depending on their LCT scores. We defined a cut-off value of 62 out of 100, which is the mean of their LCT scores rescaled to 100-point increments among those with adequate functional health literacy (Fig. 1). We compared demographic characteristics, patient empowerment, and health information seeking of participants with and without greater scores in LCT. In addition, we presented a graphical depiction to compare participants’ understanding of the terms included in the LCT questionnaire depending on their functional health literacy level. χ2-tests and t-tests were used to determine statistical significance.
Distribution of LCT scores (n=300).
We performed univariable and multivariable logistic regression analysis to identify factors associated with LCT level. In this analysis, the empowerment score was dichotomized (high vs. low) at their mean value. For the multivariable analysis, we adjusted for sex, participants group, age group, education level, income, residence, and experience of cancer-related information seeking. All statistical analyses were performed using R ver. 4.0.2 (R Foundation for Statistical Computing), and statistical significance was defined as a 95% confidence interval, two-sided, and p < 0.05.
Results
1. The characteristics of participants
The low-scoring (LS) group in LCT had a higher proportion of males, (41.4% vs. 23.9%, p=0.002), lower monthly income (< $4,000, 45.7% vs. 32.6%, p=0.048), and lived at the province (47.5% vs. 33.3%, p=0.037), compared to the high scoring (HS) group (Table 1). For cancer patients, the time since diagnosis was not significantly different (p=0.456) (S1 Table). History of chemotherapy was not associated with the score of LCT (p=0.999).
Characteristics of the study population (n=300)
2. The differences in patient empowerment, functional health literacy, and cancer-related information-seeking experience by level of LCT
Compared to the HS group, the LS group in LCT was more likely to have low mean scores of patient empowerment (113.4 vs. 119.5, p < 0.001), consistent among the intrapersonal (54.9 vs. 57.5, p=0.001), interactional (29.2 vs. 31.0, p=0.002), and behavioral factors (29.2 vs. 31.0, p=0.002) (Table 2). Additionally, the LS group was less likely to have cancer-related information seeking experiences (83.3% vs. 95.7%, p=0.001). Additionally, these statistical significances were consistent after adjusting for sex, participants group, age group, education level, income, residence, and cancer-related information seeking experience (all p-values were less than 0.05).
The differences in patient empowerment, functional health literacy, and cancer-related information-seeking experience by the level of LCT (n=300)
3. The differences in the understanding of each term in the LCT questionnaire according to the level of functional health literacy
Overall, the average rates of the participants who answered that they knew the teminologies in the LCT questionnaire tended to decrease (78% to 34%, data not shown) as the difficulty level increased (Fig. 2). Those with limited functional health literacy were less likely to know most terms (see the detail in S2 Table). In Level 1, those with limited health literacy were less likely to know the terms “Mucosa,” “Infection,” “Vaccine,” and “Immunity” than those with adequate health literacy (S2 Table). Less than half of both groups reported that they knew about “Pulmonary complications” (adjusted p=0.649). In Level 2, those with limited health literacy were less likely to know about “Intestinal obstruction,” “Nausea,” “Oral,” Abdominal cavity,” “Subcutaneous,” “Coloration,” “Bone marrow,” “Influenza,” “Red blood cell,” “Rash,” “Hypersensitivity reaction,” “White blood cell,” “Diuretic,” “Antidiarrheal drug,” “Stomatitis,” “Tinnitus,” and “Ambulatory treatment” than those with adequate health literacy (S2 Table). Regardless of health literacy level, 32% reported that they knew about the “Live vaccine” (adjusted p-value=0.923). Less than half of the participants answered that they knew the Level 3 terms except “Intravenous,” “Sepsis,” and “Platelet” (S2 Table). Less than 20% of them reported that they knew “Intrathecal” (5.3%), “Retention of body fluid” (10.3%), “Hickman catheter” (14%), and “Pruritus” (15.3%; all adjusted p > 0.05). The participants with limited health literacy were less likely to know “Peripherally inserted central catheters,” “Peripheral neuropathy,” “Pulmonary fibrosis,” “Electrolytes,” and “Platelets” (S2 Table). Terms that more than half of patients found difficult to understand, such as “Mucosa,” “Live vaccine,” “Intestinal obstruction,” “Nausea,” “Antiemetic drug,” Retention of body fluid,” and “Pruritus,” and “Electrolyte,” tended to be written mostly in Sino-Korean, Hangul expression based on Hanja (Chinese characters) (Fig. 2). Additonally, terms such as “Oral,” “Coloration,” “Bone marrow,” “Rash,” “Diuretic,” “Antidiarrheal drug,” “Stomatitis,” and “Tinnitus,” which have statistically significant differences in understanding depending on the health literacy level, were also based on Sino-Korean.
Differences in the understanding of each term by level of health literacy (n=300). Levels 1, 2, and 3 indicate the difficulty of terms reviewed and determined by advanced oncology practice nurses in charge of chemotherapy education. Higher levels indicate greater difficulty in understanding the terms.
4. Factors associated with low level of LCT
The multivariable logistic regression analysis showed that male participants (adjusted odds ratio [aOR], 2.59; 95% confidence interval [CI], 1.48 to 4.62), those with no cancer-related information-seeking experience (aOR, 4.32; 95% CI, 1.75 to 12.33), and those with low empowerment (aOR, 3.07; 95% CI, 1.83 to 5.23) were more likely to have a low level of LCT (Table 3).
Factors associated with being at a low level of LCT (n=300)
Discussion
This study investigated which CTx-related terms were the most difficult for cancer patients and their caregivers. Additionally, we identified the factors associated with low level of LCT. The participants tended to have difficulties in understanding terms related to blood count, risk of infection, and symptoms written in Sino-Korean. This was particularly evident for those with limited functional health literacy. In the multivariable analysis, male participants, those with lower empowerment, and those with no cancer-related information seeking experience were more likely to have a low level of LCT.
Our findings reinforce the notion that medical terms remain a significant learning barrier in cancer patients and their caregivers’ understanding of medical treatments such as CTx, irrespective of their functional health literacy levels. Our study also found that terms related to blood count and risk of infection were difficult for the participants, which is critical to both patients and oncologists for maintaining the continuity of chemotherapy treatment [14-16]. Terms such as “Intrathecal,” “Pruritus,” and “Retention of body fluid” posed challenges even for patients with good health literacy. This also had difficulties defining the terms “Mucosa” and “Pulmonary complications,” which were assumed by oncology nurses to be relatively straightforward and easy. Moreover, our study showed that neither the duration of chemotherapy treatment nor the time since diagnosis significantly affected patients’ understanding of chemotherapy-related terms. This indicates that prolonged exposure to treatment does not naturally improve a patient’s medical literacy, highlighting a crucial gap in the spontaneous acquisition of medical knowledge. Therefore, it is important to assess their understanding of medical terms and provide appropriate education before starting CTx.
The absence of a significant relationship between the history of chemotherapy, time since diagnosis, and literacy in chemotherapy-related terms suggest a persistent gap in public knowledge. This gap does not seem to be closing over time, highlighting a critical need for systematic assessment of patient’s understanding of medical terms and the provision of tailored educational interventions prior to initiating chemotherapy. This underscores the potential of targeted educational strategies to enhance patient literacy and, by extension, their engagement and outcomes in chemotherapy treatment.
Interestingly, our findings indicate that patients, especially those with mid-level health literacy, struggled with certain symptom-related terms such as “Oral,” “Rash,” “Coloration,” “Electrolyte,” “Peripheral neuropathy,” “Hypersensitivity reaction,” and “Antidiarrheal drugs.” This was more pronounced among those with limited functional health literacy. It may be because these terms are originally based on medical jargon and Sino-Korean. Korean medical jargon frequently intertwines the modern Korean language with Sino-Korean [22]. Using Sino-Korean can lead to difficulties in understanding and, thus, hinder the promotion of health information to the public. Individuals with lower literacy levels particularly struggle to understand medical terms originating from Sino-Korean. In a Korean translation and linguistic validation study of the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE), a reliable and valid measure for identifying symptomatic events in cancer patients, Korean patients reported difficulties in interpreting the Sino-Korean terms “Vagina” and “Bed sores” [23]. This issue mirrors the difficulties patients face in Western cultures, where medical terms are often derived from Greek and Latin origins, making it generally challenging for the public to comprehend [24]. This cross-cultural comparison highlights a common learning barrier in healthcare communication and strongly emphasizes the critical need for healthcare providers to adopt more inclusive communication strategies. To bridge this gap, a glossary of complex terms must be included in educational materials and clear, accessible explanations must be provided prior to education. Such initiatives could enhance patient and caregiver comprehension, engagement, and, ultimately, the effectiveness of healthcare outcomes.
In our study, participants who actively sought cancer-related information were more likely to have higher scores in LCT, highlighting the connection between active information-seeking and improved medical comprehension. This is similar to the results of the previous studies. Studies found that individual health literacy is associated with health information-seeking behavior [25,26]. Our results showed that femlae participants had better LCT than males. This is because women being more active in seeking health information than male [27,28]. Interestingly, our findings did not reveal significant geographic disparities in LCT levels, challenging the traditional view that geographic health inequalities serve as a primary barrier to health literacy [29,30]. This suggests that with the advent of online resources, the barriers to accessing health information have shifted, emphasizing the importance of information-seeking behaviors over geographic limitations. According to a cross-sectional study of 615 adults in the United States, those with poor health literacy were less likely to seek health information online [26]. Consequently, understanding the public’s awareness of and willingness to engage with available resources emerges as crucial, surpassing traditional considerations of geographic access.
Those less empowered in cancer treatment and management were more likely to have poor LCT. It is widely recognized that there is a complementary relationship between patient empowerment and health literacy [31]. Empowered participants, who were well-informed, motivated, and confident in their knowledge and health literacy skills, tended to be more actively involved in their care. They were also more likely to communicate their needs and concerns to health professionals [32]. Although the cross-sectional design of our study limits our ability to draw causal conclusions, the data suggest that individuals who feel empowered in their approach to cancer treatment and management tend to be more proactive in seeking health information. This observation underscores the importance of focusing on patients who are less empowered to engage in medical treatment, suggesting a critical area for intervention and support.
This study has several limitations. First, as this was a cross-sectional study, it is difficult to establish a temporal relationship between LCT and other covariates. Further prospective studies is necessary to confirm this association. Second, we conducted this study at the Cancer Education Center, which may have recruited a relatively large number of participants interested in cancer information. Although we tried to recruit the participants who have not yet started CTx, LCT scores may still be overestimated. The generalizability of our findings may be somewhat limited. Third, LCT was assessed based on self-evaluation without conducting debriefing interviews to confirm whether they correctly knew each term. Discordance between their perceived knowledge and actual knowledge may exist. To complement this, we assessed S-KHLT, a valid and reliable measure of functional health literacy, and utilized it as a criterion for determining LCT levels. Despite these challenges, the absence of prior research examining the understanding of chemotherapy-related terms and health literacy among cancer patients and their families lends significant clinical relevance to our findings.
In conclusion, our study sheds light on the linguistic health literacy challenges faced by cancer patients and their caregivers, specifically in understanding chemotherapy-related terms. To enhance comprehension and support, minimizing the use of medical jargon and Sino-Korean terms is necessary. Providing supplementary materials and channels that elucidate unfamiliar chemotherapy terms could also significantly improve patient and caregiver understanding. Digital platforms, including social media, chatbots, and online streaming services, emerge as valuable tools in this context. Beyond offering appropriate informational resources, it is crucial to assess the readiness and willingness of patients and their caregivers to engage with and apply this new knowledge to their treatment journey. This approach aims to improve linguistic health literacy and empower patients and caregivers in their engagement in cancer treatment management to improve health outcomes and quality of life.
Electronic Supplementary Material
Supplementary materials are available at Cancer Research and Treatment website (https://www.e-crt.org).
Notes
Ethical Statement
This study was approved by the Institutional Review Board of the Samsung Medical Center (SMC 2021-04-190). Informed consent was obtained from all individual participants included in the study.
Author Contributions
Conceived and designed the analysis: Lee M, Kim N, Kim HY, Lee A, Yoon J, Cho J.
Collected the data: Kim N, Kim HY, Lee A.
Contributed data or analysis tools: Lee M, Kim N, Kim HY, Lee A, Cho J.
Performed the analysis: Lee M.
Wrote the paper: Lee M, Kim N, Yoon J, Cho J.
Supervision: Cho J.
Funding acquisition: Cho J.
Conflicts of Interest
Conflict of interest relevant to this article was not reported.
Funding
This study was supported by the National Research Foundation of Korea (NRF) grant funded by the Korean government (NRF-2021R1A2C2011083 and RS-2023-00212647).