Background
Cancer ranks as the second leading cause of global mortality, with nearly 10 million deaths attributed to it in 2020. 1 , 2 In Saudi Arabia, the Global Cancer Observatory (GCO) reported 27,885 new cancer cases and 13,069 deaths in 2022. 3 With the increasing incidence of cancer, there has been a corresponding rise in the demand for chemotherapy. However, while chemotherapy is effective in treating cancer, it is often accompanied by adverse effects that can impact patients’ overall well-being, including mental health, sexual health, and work-life balance. 4 These side effects can significantly contribute to morbidity, reduced quality of life, and potential treatment non-adherence. 4 , 5 Patient education regarding chemotherapy regimens and their potential side effects is, therefore, crucial. Importantly, some adverse effects are manageable through patient education and the use of readily available supportive care medications at home. 6 Despite the recognized importance of patient education, limited evidence is available regarding oncology patients’ understanding of their chemotherapy regimens and treatment-related toxicities in Saudi Arabia, particularly in relation to healthcare utilization outcomes such as emergency department visits and hospital admissions.
While existing research in Saudi Arabia explores cancer patients’ awareness of chemotherapy side effects and their management, 7–10 there is a lack of studies specifically focused on patients’ knowledge regarding their chemotherapy regimens. One study revealed that a significant portion (84.7%) of patients could not recall their chemotherapy drug names. 7 Similarly, another study reported that only 13.7% of patients demonstrated full understanding of their treatment plans when compared to their physicians. 8 Regarding side effects, a study in Jeddah found that a mere 21.2% of patients accurately identified the three most significant side effects associated with their chemotherapy, while 22.4% were entirely unaware of any potential adverse effects. 8 Another study demonstrated that cancer patients scored an average of 45.8% on a knowledge test regarding chemotherapy side effects, with 11.1% demonstrating even lower understanding. 7 Furthermore, a separate study explored the impact of oral chemotherapy side effects, such as inflammation, ulcers, and dehydration, on patients’ psychological well-being, revealing that at least 60% of patients experienced at least one psychological symptom. 9 This aligns with other research highlighting the potential for patient education to mitigate these preventable adverse effects. 10
The relationship between patient awareness and healthcare utilization is complex and may operate in different directions. Greater awareness of chemotherapy regimens and adverse effects may reduce emergency department visits and hospital admissions by improving symptom recognition, encouraging appropriate self-management, and promoting timely use of supportive care measures at home. 11 Conversely, patients with greater awareness may be more vigilant regarding treatment-related symptoms and therefore seek medical attention more frequently. 12 , 13 Given these potentially competing mechanisms, the association between patient awareness and healthcare utilization remains uncertain and warrants further investigation.
Although several studies from Saudi Arabia have evaluated patients’ awareness of chemotherapy side effects, important gaps remain regarding patients’ knowledge of their specific chemotherapy regimens and the potential relationship between awareness and healthcare utilization. Therefore, further investigation is warranted. This cross-sectional descriptive study aimed to assess cancer patients’ awareness and knowledge regarding their chemotherapy regimens and potential adverse effects as a comprehensives cancer center in Saudi Arabia. In addition, the study explored the association between patients’ awareness levels and prior emergency department visits or hospital admissions related to chemotherapy within the preceding year.
Methods
Study Design
This was a single-center, cross-sectional descriptive study evaluating oncology patients’ awareness during chemotherapy. Data collection was conducted using an interview-based questionnaire. The questionnaire assessed patients’ demographics, level of awareness regarding their chemotherapy regimen, knowledge of the specific drugs used, and potential adverse events associated with the treatment. The primary objective of this study was to investigate the level of awareness and knowledge among oncology patients regarding their chemotherapy regimen and its potential adverse effects. Our secondary objective was to explore the association between the level of patient awareness and prior hospital admissions or emergency department (ED) visits reported during the study period.
Study Participants and Sample Size
This study included adult oncology patients undergoing chemotherapy at the outpatient infusion unit at a tertiary care center with a comprehensive cancer center in Riyadh, Saudi Arabia. The sample consisted of adults newly diagnosed with cancer who had at least received one cycle of treatment to ensure education was provided to them. Patients diagnosed with cancer who have not received chemotherapy or are under the age of 18 were excluded from participation. We aimed to recruit 261 participants to ensure sufficient statistical power for our analyses. The sample size calculation was based on the total number of newly diagnosed cancer patients who initiated a chemotherapy regimen for the first time at our cancer center in the previous year (N = 617). While the required number of participants was determined to be 261, we targeted to recruit about 300 subjects, since there is a possibility of non-compliance or missing responses. We applied simple random sampling technique from the list of all eligible subjects to prevent selection bias. All other eligible subjects were not recruited because the required number had already been attained. Assuming a 95% confidence level, a margin of error of ±5%, and an expected awareness proportion of 50%, the initial sample size was determined using the Cochran Formula. When adjusted for a finite population, the final sample size was 261 patients.
Data Collection
Data for this study were collected over a one-year period, from November 2022 to November 2023, from patients receiving chemotherapy infusions at the comprehensive cancer center’s outpatient infusion unit. We used an investigator-developed questionnaire, administered as an interview-based survey in the infusion unit. Item generation aligned with the study objectives, focusing on beliefs about the appropriateness of education and knowledge of chemotherapy regimens and adverse effects. Four subject-matter experts reviewed the draft for face and content validity, confirming clarity, relevance, and coverage. The final instrument consisted of two sections: a Beliefs section with four items and a Knowledge section with seven items. All items employed a 5-point Likert scale ranging from strongly disagree to strongly agree, with no reverse-coded items. This study was approved by the Institutional Review Board (IRB) of King Abdullah International Medical Research Center (KAIMRC), Riyadh, Saudi Arabia (IRB No: NRC22R/430/08). The study complies with the Declaration of Helsinki.
Patient Awareness Assessment
Patient awareness regarding cancer diagnosis and treatment was determined based on 6 awareness related questions from investigator-developed instrument, which was assessed through patient self-report and later validated against patient EMR records. The 6 items examined patient awareness related to: (1) cancer diagnosis, (2) year of diagnosis, (3) cancer stage, (4) current treatment, (5) treatment cycle number and (6) treatment goal (ie, cure versus palliation).
Each item was answered by the patient on a Likert scale or Yes, and No, reflecting patient’s level of knowledge and confidence in the recollection. Each patient answer was compared with corresponding EMR documentation and scored 1 if patient’s answer was within the pre-specified threshold range of concordance with EMR-recorded information; otherwise the answer was scored 0. A composite awareness score was obtained by summing the scores of 6 dichotomized items and could vary from 0 to 6. This score was then categorized into 3 categories of awareness (not aware – 0–1, low awareness – 2–3, high awareness – 4–6). This categorization was later combined not aware patients with low awareness patients as one group of patients and high group patients as second group of patients. The content of the items was reviewed by oncology pharmacists for clinical relevance, content and face validity before the beginning of data collection. Then, a pilot study with 28 participants evaluated feasibility, validity, comprehension, and timing of the developed questionnaire. The median completion time ranged from 7 to 12 minutes, and internal consistency was acceptable with Cronbach’s alpha above 0.71 for the overall scale. No items were added, removed, or reworded after the pilot. Psychometric evaluation was limited to an assessment of content validity and internal consistency reliability with Cronbach’s α of 0.71), which indicate an acceptable coherence.
Prior to commencing the interview process, informed consent was obtained from all participants, emphasizing the voluntary nature of their participation and ensuring the anonymity of their responses. The first section of the questionnaire assessed participants’ cancer treatment awareness. This section gathered information on their level of understanding of their diagnosis, chemotherapy regimen, potential treatment-related adverse events, available management strategies for these adverse events, and any prior emergency room visits or hospitalizations within the past year due to chemotherapy-related complications. The second section focused on collecting demographic data, including participants’ age, gender, nationality, marital status, educational level, smoking history, and healthcare professional status ( Appendix 1 and 2 ). After interviewing the patients, data collectors checked the electronic medical records (EMR), and verified the patients’ information in terms of cancer diagnosis and stage, chemotherapy regimens, emergency department (ED), and hospital admissions. Emergency department visits and hospital admissions were assessed as prior events occurring within the 12 months preceding questionnaire administration, based on patient report and EMR verification when available.
Statistical Analysis
Descriptive statistics were computed to summarize the demographics and other relevant characteristics of participating cancer patients. Means and standard deviations (SD) were reported for continuous variables, while frequencies and percentages were used for categorical variables. To compare self-reported beliefs and knowledge among cancer patients with the measured level of awareness in EMR, we conducted an independent t -test. Awareness classification was based on concordance between selected patient self-reported knowledge items and corresponding information verified in the electronic medical record (EMR). Participants were categorized into two groups for analysis: highly aware/aware and not aware/low awareness. Patients whose self-reported knowledge was concordant with the relevant EMR-documented information were categorized as highly aware/aware, whereas those with discordant responses were categorized as not aware/low awareness. For descriptive interpretation, overall awareness was operationalized using predefined cutoffs: scores of 0–1 indicated not aware, 2–3 indicated low awareness, and 4–6 indicated highly aware. These categories were used as an operational classification for comparison purposes within this study.
We tested the assumption of equal variances, which was met based on the p-value obtained from Levene’s test. Therefore, the data were homogeneous and had equal variance, and we reported the pooled t -test results. To assess patients’ self-reported understanding and knowledge, a structured questionnaire was administered using a 5-point Likert scale: 5 = Strongly Agree 4 = Agree 3 = Neutral 2 = Disagree 1 = Strongly Disagree. The mean responses for each item were compared between the Not Aware/Low Awareness group and the Highly Aware group. A t -test analysis was conducted to determine statistical differences, with significance levels set at p < 0.05 (*) and p < 0.01 (**). Higher scores indicate a greater self-reported understanding of cancer-related information. Statistically significant differences (p < 0.05) between groups were interpreted as indicating differences between self-reported understanding and awareness classification as operationalized using EMR-verified information.
We further conducted exploratory negative binomial regression models to examine associations between awareness level, selected demographic characteristics, and the counts of emergency department visits and hospital admissions in the prior year. Negative binomial regression was used because the count outcomes were overdispersed (Pearson chi-square/degrees-of-freedom ratio = 2.34 for ED visits and 2.21 for hospital admissions). Crude and adjusted incidence rate ratios (IRRs) with 95% confidence intervals were estimated, and a sensitivity analysis additionally adjusted for advanced (stage IV) disease. The regression analyses were intended as exploratory association analyses within a cross-sectional design and should not be interpreted as establishing temporal or causal relationships. Statistical significance was set at α = 0.05, and all tests were 2-tailed. Descriptive statistics and group comparisons were performed using SAS statistical software (version 9.4, SAS Institute, Cary, NC), and the negative binomial regression models were performed using IBM SPSS Statistics (version 27; IBM Corp., Armonk, NY).
Results
Baseline Characteristics
In our study, we screened 617 eligible patients, approached 306 patients, and interviewed 270 participants ( Figure 1 ). The average age of participants were 52 years. The gender distribution showed that 105 (38.9%) were male, while 165 (61.1%) were female. Regarding marital status, 178 (65.9%) were married, and 83 (30.7%) were categorized as single, widowed, or divorced. Regarding education, 94 (34.8%) had a high school diploma, and 77 (28.5%) had a bachelor’s degree or higher. The smoking status of the participants indicated that 220 (81.5%) were non-smokers, 30 (11.1%) were ex-smokers, and 20 (7.4%) were current smokers. The majority of participants were Saudi nationals (95.6%), while only 12 (4.4%) were residents of other nationalities. Among the participants, only 11 (4.1%) were healthcare professional employees.

In regard to English language fluency, half of the patients (56.7%) reported that they do not speak English, 51 (18.9%) were at beginner’s level, 37 (13.7%) at an intermediate level, and 28 (10.4%) at an advanced level. The distribution of cancer diagnoses included 38 (14.1%) participants with colon and rectal cancer, 91 (33.7%) with breast cancer, 9 (3.3%) with lung cancer, 38 (14.1%) with lymphoma, multiple myeloma, and leukemia, and 94 (34.8%) with other types of cancer. The distribution of cancer stages showed that 19 (7.0%) participants were at stage I, 15 (5.6%) at stage II, 53 (19.6%) at stage III, 130 (48.1%) at stage IV, and 20 (7.4%) had hematologic cancer ( Table 1 ). Demographic information was comparable between the high-aware and low/no-aware groups, including age, gender distribution, marital status, education, smoking status, nationality, employment in healthcare, English language fluency, cancer type, and stage of disease.
Table 1
Baseline Characteristics of Cancer Patients
| Characteristic, n (%) | No/Low Awareness, N = 83 (30.7%) | High Awareness, N=187 (69.3%) | Total, N=270 (100%) |
| Age, mean (SD) | 53.28 (15.11) | 52.07 (17.06) | 52 (16) |
| Gender | |||
| Male | 33 (40.2) | 72 (38.3) | 105 (38.9) |
| Female | 49 (59.8) | 116 (61.7) | 165 (61.1) |
| Marital Status | |||
| Married | 53 (64.6) | 125 (66.5) | 178 (65.9) |
| Single/Widowed/Divorced | 25 (30.5) | 58 (30.8) | 83 (30.7) |
| Prefer not to say | 4 (4.9) | 5 (2.7) | 9 (3.3) |
| Education | |||
| High School Diploma | 29 (35.4) | 65 (34.6) | 94 (34.8) |
| Bachelor’s Degree and Higher | 17 (20.7) | 60 (32.0) | 77 (28.5) |
| Prefer not to say | 36 (43.9) | 63 (33.5) | 99 (36.7) |
| Smoking Status | |||
| Non-smoker | 72 (87.8) | 148 (78.7) | 220 (81.5) |
| Ex-smoker | 6 (7.3) | 24 (12.8) | 30 (11.1) |
| Smoker | 4 (4.9) | 16 (8.5) | 20 (7.4) |
| Nationality | |||
| Saudi | 80 (97.6) | 178 (94.7) | 258 (95.6) |
| Resident | 2 (2.4) | 10 (5.3) | 12 (4.4) |
| Healthcare Professional Employee | |||
| No | 81 (98.8) | 178 (94.7) | 259 (95.9) |
| Yes | 1 (1.2) | 10 (5.3) | 11 (4.1) |
| English Language Fluency | |||
| Does not speak English | 52 (63.4) | 101 (53.7) | 153 (56.9) |
| Beginner | 13 (15.9) | 38 (20.2) | 51 (19.0) |
| Intermediate | 13 (15.9) | 24 (12.8) | 37 (13.7) |
| Advanced | 4 (4.9) | 24 (12.8) | 28 (10.4) |
| Cancer Diagnosis | |||
| Colon/Rectal | 12 (14.6) | 26 (13.8) | 38 (14.1) |
| Breast | 26 (31.7) | 65 (34.6) | 91 (33.7) |
| Lung | 1 (1.2) | 8 (4.3) | 9 (3.3) |
| Malignant Hematologic | 9 (11.0) | 29 (15.4) | 38 (14.1) |
| Others | 34 (41.5) | 60 (31.9) | 94 (34.8) |
| Cancer Stage | |||
| I | 6 (7.3) | 13 (7.1) | 19 (7.2) |
| II | 5 (6.1) | 10 (5.3) | 15 (5.7) |
| III | 12 (14.6) | 41 (21.8) | 53 (20.1) |
| IV | 43 (52.4) | 87 (46.3) | 130 (49.2) |
| I do not know | 9 (11.0) | 12 (6.9) | 20 (7.6) |
| Not available | 7 (8.5) | 24 (12.8) | 33 (12.2) |
The Comparison of Self-Reported Cancer Patients’ Beliefs and Knowledge with the Measured Level of Awareness in Electronic Medical Records
In Table 2 , we compared the self-reported beliefs and knowledge of cancer patients during the interview with their measured level of awareness as documented in electronic medical records. Patients were categorized into two groups: those with low awareness and those with high awareness. Of the 270 participants interviewed, 83 (30.7%) demonstrated Not Aware/Low Awareness levels, while 187 (69.3%) demonstrated Highly Aware/Aware levels. While no statistically significant differences were observed in beliefs regarding education about cancer diagnosis (p = 0.19) or the importance of follow-up with a doctor (p = 0.52), a significant difference was observed in education about the cancer treatment regimen (p = 0.04). Highly aware patients scored significantly higher (4.64) compared to low-awareness patients (4.37), indicating a stronger understanding of their treatment regimen among those with greater awareness.
Table 2
Comparison of Self-Reported Cancer Patients’ Understanding and Knowledge with the Measured Level of Awareness in Electronic Medical Records
Notes : *p < 0.05, **p < 0.01. Values are presented as item means, and the overall mean (standard deviation) is reported for each variable.
| Not Aware/Low Awareness Level (SD) | Highly Aware/Aware (SD) | t-Value | p-Value | |
| N = 83 (30.7%) | N=187 (69.3%) | |||
| Beliefs | ||||
| Item 1: I believe I was appropriately educated about my cancer diagnosis | 4.42 (1.24) | 4.61 (1.06) | −1.30 | 0.19 |
| Item 2: I believe I was appropriately educated about my cancer regimen | 4.37 (1.20) | 4.64 (0.95) | −1.98 | 0.04* |
| Item 3: I believe enough resources were provided to me by the hospital staff | 3.77 (1.65) | 4.13 (1.55) | −1.71 | 0.08 |
| Item 4: I believe it is important to follow up with my doctor even if I have improved or finished chemotherapy sessions | 4.89 (0.52) | 4.93 (0.36) | −0.64 | 0.52 |
| Knowledge | ||||
| Item 1: I know what is the goal of cancer treatment for my cancer diagnosis | 3.91 (1.64) | 4.54 (1.12) | −3.65 | <0.01** |
| Item 2: I know what cancer regimen I am currently receiving | 4.27 (1.47) | 4.85 (0.59) | −4.63 | <0.01** |
| Item 3: I am aware of the differences between traditional chemotherapy, biologic therapy, and radiation | 2.44 (1.79) | 2.80 (1.85) | −1.50 | 0.13 |
| Item 4: I can recall the number of chemotherapy cycles I have received, including this one | 4.60 (1.05) | 4.73 (0.88) | −1.06 | 0.29 |
| Item 5: I know how long I will need to continue my cancer treatment | 3.34 (1.88) | 3.67 (1.79) | −1.36 | 0.17 |
| Item 6: I am aware of most side effects from my cancer regimen | 4.56 (1.04) | 4.79 (0.77) | −2.02 | 0.04* |
| Item 7: I know which supportive care medications I have at home and how to use them for chemotherapy side effects | 4.76 (0.82) | 4.75 (0.87) | 0.05 | 0.95 |
Regarding knowledge, significant differences were observed in understanding the goal of cancer treatment (p < 0.01), knowledge of the current cancer regimen (p < 0.01), and awareness of side effects (p = 0.04). Highly aware patients scored consistently higher in these areas, demonstrating better understanding of treatment goals, specific cancer regimens, and potential side effects. However, no significant differences were observed in knowledge of treatment modalities (p = 0.13), recall of chemotherapy cycles (p = 0.29), knowledge of treatment duration (p = 0.17), or understanding of supportive care medications (p = 0.95), which indicates similar levels of understanding in these domains regardless of awareness levels.
Patients who believe they are not aware or have a low level of awareness regarding having appropriate education about their cancer diagnosis 4.42 (1.24), compared with patients who believe they are highly aware 4.61 (1.06), with a t-value of (−1.30) and p-value of (0.19). The comparison in levels of awareness in the education of the cancer regimen has revealed a significant difference between low levels of awareness 4.37 (1.20), and high levels of awareness 4.64 (0.95), as the t-value (−1.98) and p-value (0.04). Having enough resources provided by the hospital staff to the patients resulted in lower levels of awareness, 3.77 (1.65), and high levels of awareness, 4.13 (1.55), resulting in a t-value (−1.71) and p-value (0.08).
Believing in the importance of following up with the physician even after improvement or finishing chemotherapy sessions showed a low level of awareness, 4.89 (0.52), and a high level of awareness, 4.93 (0.36), showing a t-value of (−0.64) and a p-value (0.52). Knowing the goal of cancer treatment for their cancer diagnosis correlated with lower levels of awareness (3.91 [1.64]) and higher levels of awareness (4.54 [1.12]), with a significant p-value (<0.01) and t-value (−3.65). Cancer regimen being received at the time of interview displayed as low levels of awareness 4.27 (1.47), and high levels of awareness 4.85 (0.59) revealed a t-value of (−4.63) and significant p-value (<0.01). The knowledge of differences between traditional chemotherapy, biologic therapy, and radiation in low-level awareness patients, 2.44 (1.79), and high-level awareness patients, 2.80 (1.85), resulted in a t-value (1.50) and p-value (0.13). The ability to recall the number of chemotherapy cycles patients have received, including the cycle at the time of interview, had a low awareness level of 4.60 (1.05), and a high awareness level of 4.73 (0.88), revealing a t-value of 1.06 and a p-value of 0.29. Knowing how long patients need to continue their cancer treatment resulted in a low knowledge level of 3.34 (1.88), whereas a high knowledge level of 3.67 (1.79) displayed a t-value (1.36) and a p-value (0.17). In regard to patients’ awareness of most side effects from the cancer regimen they are receiving, patients with a lower knowledge level, 4.56 (1.04), and a higher knowledge level, 4.79 (0.77) exhibited a t-value (2.02) and a significant p-value (0.04). The knowledge of which supportive care medications patients have at home and how to use them for chemotherapy side effects was low in 4.76 (0.82) and high in 4.75 (0.87), presented by a t-value of 0.05 and a p-value of 0.95 ( Table 2 ).
The Relationship Between Self-Reported Awareness and the Rate of Emergency Department (ED) Visits
In the negative binomial models ( Table 3 ), awareness level was not associated with the rate of ED visits in either crude (IRR 1.03; 95% CI 0.68–1.57) or adjusted (IRR 1.08; 95% CI 0.79–1.47; p = 0.63) analyses. The only statistically significant predictor was English fluency: patients who did not speak English had a higher rate of ED visits than those with advanced fluency (adjusted IRR 2.50; 95% CI 1.20–5.21; p = 0.015), with a borderline elevation for intermediate fluency (adjusted IRR 1.97; 95% CI 0.99–3.95; p = 0.055). Female gender showed a non-significant trend (adjusted IRR 1.37; 95% CI 0.97–1.93; p = 0.07). Age, marital status, education, smoking status, nationality, and healthcare employment were not significantly associated with ED visits.
Table 3
Negative Binomial Regression: Awareness and Rate of Emergency Department Visits
Notes : Crude (unadjusted) awareness IRR = 1.03 (95% CI 0.68–1.57), p = 0.872. Negative binomial model. Overdispersion confirmed (Poisson Pearson χ 2 /df = 2.34). Abbreviations : IRR, incidence rate ratio; CI, confidence interval.
| Variable | Adjusted IRR (95% CI) | p-value |
| Level of awareness: Highly aware (vs Not/Low) | 1.08 (0.79–1.47) | 0.627 |
| Age (per year) | 1.00 (0.99–1.01) | 0.373 |
| Gender: Female (vs Male) | 1.37 (0.97–1.93) | 0.072 |
| Marital: Married (vs Single/Widowed/Divorced) | 1.24 (0.90–1.71) | 0.189 |
| Marital: Prefer not to say | 1.17 (0.51–2.69) | 0.716 |
| Education: High school (vs Prefer not) | 1.20 (0.84–1.72) | 0.326 |
| Education: Bachelor or higher | 1.53 (0.91–2.57) | 0.104 |
| Smoking: Non-smoker (vs Smoker) | 0.98 (0.51–1.90) | 0.961 |
| Smoking: Ex-smoker | 1.25 (0.61–2.57) | 0.549 |
| Nationality: Saudi (vs Resident) | 1.78 (0.59–5.39) | 0.306 |
| Healthcare professional: No (vs Yes) | 1.44 (0.56–3.71) | 0.444 |
| English: Does not speak (vs Advanced) | 2.50 (1.20–5.21) | 0.015 |
| English: Beginner | 0.86 (0.41–1.79) | 0.684 |
| English: Intermediate | 1.97 (0.99–3.95) | 0.055 |
The Relationship Between Self-Reported Awareness and Hospital Admission Rates
In the negative binomial models ( Table 4 ), awareness level was not associated with hospital admissions in either crude (IRR 1.23; 95% CI 0.60–2.53) or adjusted (IRR 1.16; 95% CI 0.53–2.52; p = 0.71) analyses. Female gender was the only significant independent predictor, with a markedly higher admission rate than males (adjusted IRR 6.37; 95% CI 2.35–17.29; p < 0.001). Inability to speak English was associated with admissions in the crude analysis (IRR 4.26; 95% CI 1.04–17.46) but attenuated to a non-significant trend after adjustment (adjusted IRR 4.81; 95% CI 0.75–30.75; p = 0.10). Age, marital status, education, smoking status, nationality, and healthcare employment were not significantly associated with admissions.
Table 4
Negative Binomial Regression: Awareness and Hospital Admission Rates
Notes : Negative binomial model; overdispersion confirmed (Poisson Pearson χ 2 /df = 2.21; NB dispersion α = 3.02, 95% CI 1.77–5.15). Abbreviations and reference categories as in Table 3 . Wide CIs in some strata reflect small event counts and are reported transparently.
| Variable | Crude IRR | 95% CI | p | Adj. IRR | 95% CI | p |
| Awareness: Highly aware (vs Not/Low) | 1.23 | 0.60–2.53 | 0.574 | 1.16 | 0.53–2.52 | 0.707 |
| Age (per year) | 1.01 | 0.98–1.03 | 0.654 | 0.99 | 0.96–1.01 | 0.235 |
| Gender: Female (vs Male) | 2.79 | 1.37–5.67 | 0.005 | 6.37 | 2.35–17.29 | <0.001 |
| Marital: Married (vs Single/Wid/Div) | 1.36 | 0.66–2.80 | 0.411 | 1.45 | 0.70–3.02 | 0.320 |
| Marital: Prefer not | 1.15 | 0.17–7.69 | 0.883 | 1.66 | 0.26–10.84 | 0.594 |
| Education: High school (vs Prefer not) | 0.85 | 0.40–1.79 | 0.666 | 1.26 | 0.55–2.91 | 0.582 |
| Education: Bachelor or higher | 0.54 | 0.23–1.25 | 0.149 | 0.66 | 0.22–2.03 | 0.471 |
| Smoking: Non-smoker (vs Smoker) | 1.49 | 0.39–5.64 | 0.561 | 0.35 | 0.08–1.53 | 0.164 |
| Smoking: Ex-smoker | 1.33 | 0.26–6.74 | 0.728 | 1.05 | 0.21–5.19 | 0.953 |
| Nationality: Saudi (vs Resident) | 4.45 | 0.44–45.38 | 0.207 | 1.96 | 0.14–27.22 | 0.617 |
| Healthcare prof.: No (vs Yes) | 0.98 | 0.19–5.07 | 0.985 | 0.43 | 0.06–2.97 | 0.395 |
| English: Does not speak (vs Advanced) | 4.26 | 1.04–17.46 | 0.044 | 4.81 | 0.75–30.75 | 0.097 |
| English: Beginner | 1.23 | 0.24–6.35 | 0.800 | 1.08 | 0.16–7.25 | 0.936 |
| English: Intermediate | 3.40 | 0.70–16.64 | 0.130 | 5.09 | 0.81–32.14 | 0.084 |
Absolute event rates are presented in Table 5 . Rates were similar across different awareness groups, with only modest differences observed in ED visits (0.98 vs 0.94) and hospital admissions (0.37 vs 0.31).
Table 5
Absolute Event Rates of ED Visits and Hospital Admission Based on Awareness Level
| Outcome | Awareness Level | Person-Years | Rate (per Person-Year) |
| ED Visits | Not Aware/Low Awareness | 83 | 0.94 |
| High Awareness | 187 | 0.98 | |
| Hospital Admissions | Not Aware/Low Awareness | 83 | 0.31 |
| High Awareness | 187 | 0.37 |
Discussion
In this cross-sectional study, we assessed oncology patients’ awareness and knowledge of chemotherapy regimens and adverse events and explored their association with prior emergency visits and hospital admissions. In our cohort, the majority of patients (~69%) were classified as having moderate to high awareness based on self-report and concordance with EMR-verified information. This awareness classification was associated with greater knowledge of treatment goals, regimens, and side effects. Awareness was not independently associated with ED visits or hospital admissions. Instead, higher utilization was associated with limited English fluency for ED visits and with female gender for hospital admissions.
Comparable studies in different settings have reported variable levels of patient knowledge. In a Saudi study, only 8% of patients achieved high knowledge scores regarding chemotherapy and its side effects. 7 Similarly, a descriptive study from Pakistan reported that although patients expressed positive attitudes toward chemotherapy, their actual knowledge and practices were limited. 14 In Japan, educational level significantly influenced comprehension of chemotherapy among outpatients. 15 In contrast, Patients in our study report a higher self-perceived knowledge; however, discrepancies with EMR data suggest overestimation of awareness. These findings reinforce the notion that, while patients may appear to self-report high awareness, objective measurement in the EMR often reveals discrepancies.
Language proficiency and health communication are critical determinants of the quality of oncology care. In our study, limited English proficiency was independently associated with higher ED visits, with a similar but non-significant trend for hospital admissions, indicating that communication barriers may contribute to reactive rather than preventive healthcare use. This finding aligns with multiple lines of evidence. In a statewide telephone survey of 1,200 Californians, limited-English-proficient respondents were significantly more likely to report difficulties understanding medical information and adverse medication reactions, even when treated by language-concordant physicians (adjusted OR 3.2 and 2.3, respectively), underscoring persistent comprehension gaps despite interpreter or bilingual support. 16 Likewise, a study by Diamond et al systematically reviewed 33 studies and found that language-concordant care improved at least one clinical or communication outcome in 76% of studies, highlighting the protective effect of shared language on comprehension and adherence. 17 At the systems level, Chen et al demonstrated that non-English-speaking callers were far less likely to be provided access to cancer care than English-speaking callers, revealing structural communication barriers from the very first point of contact. 18 Collectively, these studies illustrate how language discordance operates throughout the cancer-care continuum, from access and comprehension to adherence and unplanned utilization, emphasizing the need for multilingual educational materials, interpreter integration, and culturally adapted counseling to reduce disparities and improve patient outcomes. 16–19
In our cohort, awareness was not independently associated with ED visits once demographic factors were accounted for, indicating that knowledge alone did not drive unplanned care. The frequency of ED visits and admissions may also be influenced by the quality of outpatient and discharge education provided to patients. Hence, education without clear symptom-triage guidance may increase cautious healthcare-seeking behavior. 20–23 These findings suggest that awareness alone may not translate into lower unplanned care without concurrent improvements in access to outpatient triage and same-day oncology review pathways.
Female gender was the principal correlate of hospital admission in our cohort, a finding aligned with reports that women often report symptoms earlier and utilize emergency services more frequently than men. 22 Together with language-related disparities, these findings highlight the complex social, behavioral, and system-level factors shaping oncology care and unplanned hospital use. Organizations should provide clear, well-structured, comprehensible, and language-appropriate education on chemotherapy regimens and their potential adverse effects. One study found that almost half of oncology patients’ ED visits and admissions are preventable. 23 Hence, integrating oncology pharmacists and patient educators to deliver reinforcement using visual aids, simplified language, and teach-back techniques can improve retention and decrease the risk of ED visits. 24 , 25 Oncology educational programs should also emphasize appropriate healthcare-seeking behaviors, clarifying which symptoms require urgent attention versus those that can be managed routinely, to avoid unnecessary ED visits. Interventions such as 24/7 nurse or pharmacist telephone triage, multilingual discharge materials, and culturally tailored counseling may help shift utilization from unplanned emergency care toward proactive outpatient management. Hence, the value of integration of organized patient education, especially those faced with language barriers could help manage their symptoms along with the assistance of outpatient triaging.
This study has several limitations that should be considered when interpreting the findings. First, the cross-sectional design precludes establishing temporal or causal relationships between awareness and healthcare utilization. Because awareness showed no independent association with either outcome, reverse causation does not affect the study’s central findings, which instead identify female gender and limited English proficiency as the main correlates of higher utilization. Second, the study was conducted at a single center, which may limit generalizability to other settings within Saudi Arabia. Third, the questionnaire was investigator-developed and, although reviewed for face and content validity and pilot tested for clarity and feasibility, additional psychometric validation was not performed. Therefore, the awareness classification should be interpreted as an operational study-specific measure rather than a fully validated latent construct. Fourth, residual confounding by unmeasured clinical variables remains possible, including performance status, line of therapy, comorbidity burden, and regimen-specific toxicity risk. Fifth, self-reported responses are subject to recall and social desirability bias, and some participants may have overestimated their understanding of their diagnosis or treatment. Although EMR verification reduced some of this variability, discrepancies between self-report and documented information remained. Sixth, some ED visits or hospitalizations occurring outside the study institution may not have been fully captured. Finally, the heterogeneity of cancer types, treatment regimens, and disease stages in the sample may have influenced both awareness and healthcare utilization patterns.
Conclusion
Patient awareness of chemotherapy was generally high but uneven across domains, with gaps in identifying regimens and in defining treatment goals. Awareness was not independently associated with ED visits or hospital admissions; female gender and limited English proficiency were the principal correlates of higher utilization. Future studies should test whether integrating structured education with proactive symptom-management pathways can reduce unplanned care, particularly for patients with language barriers and those receiving high-toxicity regimens.
Funding Statement
This research received no internal nor external funding.
Abbreviations
CI, confidence interval; ED, emergency department; EMR, electronic medical records; GCO, Global Cancer Observatory; IRR, incidence rate ratio; OR, odds ratio; SD, standard deviation.
Data Sharing Statement
The analytic code will be deposited in a public repository upon publication. Due to institutional regulations governing patient data at KAIMRC, the de-identified dataset cannot be publicly released. Researchers may request access to the data through a formal application process, subject to data sharing agreement. A dataset is available upon request.
Ethics Statement
This study was approved by the Institutional Review Board (IRB) of King Abdullah International Medical Research Center (KAIMRC), Riyadh, Saudi Arabia (IRB No: NRC22R/430/08).
Disclosure
The views expressed in this paper are those of the author(s) and do not necessarily reflect those of the Saudi Food & Drug Authority or its stakeholders. Guaranteeing the accuracy and validity of the data is a sole responsibility of the research team. The authors report no conflicts of interest.
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Associated Data
Data Availability Statement
The analytic code will be deposited in a public repository upon publication. Due to institutional regulations governing patient data at KAIMRC, the de-identified dataset cannot be publicly released. Researchers may request access to the data through a formal application process, subject to data sharing agreement. A dataset is available upon request.