Introduction
Breast cancer is the most common type of cancer in women worldwide (World Health Organization, 2020). In Vietnam, the incidence rate of breast cancer has increased by more than 30% in the past two decades (Trieu et al., 2017). In 2020, the incidence rate per 100,000 population reached 34.2, and breast cancer is now the most common and most deadly type of cancer in Vietnamese women, accounting for 13.8% of all cancer-related deaths (International Agency for Research on Cancer, World Health Organization, 2021). Notably, breast cancer tends to be diagnosed at a relatively advanced stage in Vietnam compared with other countries (Nguyen et al., 2016; Thuan et al., 2016).
A breast cancer diagnosis and subsequent treatment are traumatic experiences for women (Tsaras et al., 2018). Voigt et al. (2017) reported that 82.5% of women diagnosed with Stage 0-III breast cancer have symptoms of posttraumatic stress disorder in the first year postdiagnosis. Moreover, Blumen et al. (2016) reported that treatment costs of breast cancer are generally higher at higher disease stages. Specifically, the average treatment cost in the first 12 months after diagnosis increased the most between patients who advanced from Stage I/II breast cancer to Stage III breast cancer. Notably, the cost increase in these patients was primarily driven by the expense involved in chemotherapy. Thus, the most difficult phase of the cancer experience is typically the first year after diagnosis, during which patients experience their initial cancer diagnosis, treatment course, financial burden, and distress from cancer symptoms.
Meeting the information needs of patients is an essential capability of institutions that provide patient-centered or patient-led caring services. Healthcare institutions must clearly understand the information needs of their patients to provide them with up-to-date and relevant information that addresses their healthcare concerns and helps them make informed decisions (Clarke et al., 2016). For patients, access to disease-specific information improves their understanding of their illness and induces a sense of control and confidence during the course of its treatment (Blodt et al., 2018). Researchers have identified several factors that influence information needs, including, age, marital status, educational level, and income level (Douma et al., 2012; Kimiafar et al., 2016; Sheehy et al., 2018). Moreover, Faller et al. (2017) reported emotional and physical functioning as independent correlates of information needs.
Several studies have investigated information needs specifically in women with breast cancer (Chow et al., 2020; Lai et al., 2019; Sheehy et al., 2018). In a study of information needs in Asian women with breast cancer, Chow et al. (2020) reported that prompt information about treatment and treatment options, including side effects, was one of the top three extremely important needs at the time of diagnosis. In a study performed in Ireland, Sheehy et al. (2018) reported that information needs were highest in first year after initial diagnosis and then decreased thereafter, although the decrease in information needs after the first year was statistically significant. For patients with breast cancer, access to health-related information and opportunities to communicate may help counteract feelings of helplessness, establish a sense of control over the illness, and empower their implementation of self-management strategies (Lai et al., 2019). Meanwhile, a study performed in a population of women in Vietnam undergoing breast cancer treatment revealed that the information received by patients about the illness and its treatment was perceived to be inadequate. In addition, communicating with healthcare providers was reported as usually short and not including social support or information provision (Jenkins et al., 2020). Because of the relatively advanced stage of cancer diagnosis and the culture in Vietnam, the information needs of Vietnamese patients with breast cancer may differ from those of breast cancer populations investigated in previous studies. Therefore, this study was designed to investigate the information needs of a population of women with breast cancer undergoing treatment in Vietnam and the determinants of these needs.
The findings are expected to clarify the information needs and related determinants of this patient group in Vietnam to assist healthcare professionals to more efficiently and adequately provide health-related information to their patients under treatment for breast cancer. On the basis of a review of the literature, age, marital status, educational level, income status, body functions, and disease symptoms were investigated in this study as potential determinants of informational need in Vietnamese patients with breast cancer undergoing treatment.
Methods
Design, Participants, and Settings
Data were collected using a cross-sectional survey conducted from July 2018 to January 2021. The inclusion criteria were older than 18 years old; diagnosed with breast cancer; referred to the oncology outpatient clinic of the National Cancer Hospital, Vietnam; and currently receiving chemotherapy treatment. This oncology outpatient clinic treats approximately 1,600 breast cancer cases per month.
Ethical Consideration
This cross-sectional study was approved by the ethics committee of a university hospital (IRB No. KMUH/IRB/AF/08E-03/000). The oncology physicians in the outpatient clinics identified eligible patients, who were then given information about the study and invited to complete the questionnaires. Consent to participate in the study was implied by completion of the questionnaires.
Measurements
The Vietnamese versions of the sociodemographic questionnaire, the Toronto Information Needs Questionnaire-Breast Cancer (TINQ-BC), and the European Organization for Research and Treatment of Cancer Breast Cancer-specific quality-of-life questionnaire module (EORTC QLQ-BR23) were used to collect data. The sociodemographic data collected included age, marital status, educational level, occupational status, home location, and monthly income level. The medical data collected included breast cancer stage and date of diagnosis.
Toronto Information Needs Questionnaire-Breast Cancer
The 52-item TINQ-BC was initially developed and tested by Galloway et al. (1997) to assess the specific information needs of patients with breast cancer. The five subscales of the TINQ-BC are "disease" (nine items), "treatment" (16 items), "investigative tests" (eight items), "psychosocial" (eight items), and "physical" (11 items). The importance of each item is scored using a 5-point Likert scale ranging from 1 (not important) to 5 (extremely important), and the total score range is 52-260, with higher scores indicating higher information need. The original author reported intercorrelation coefficients obtained for the subscales to the total scale as high (.78-.88) and the Cronbach's alpha coefficient for each subscale and total scale as ranging from .81 to .93 (Galloway et al., 1997).
After the author translated the instrument into Vietnamese, three Vietnamese experts (one breast oncologist, one nursing practitioner, and one clinical teacher) were invited to assess the scale in terms of relevance, correctness, and clarity. The content validity index was calculated, and the questionnaire was revised accordingly. After questionnaire revision, the preexisting tests were administered in five women undergoing breast cancer treatment at a hospital in Vietnam. The main purposes of this step were to test the clarity of the scale, revise the questionnaire as needed, identify problems likely to occur in the research process, and calculate the average time required to complete the questionnaire. The Cronbach's alpha value of the instrument used in this study was .83. Intercorrelation coefficients for individual subscales and the total scale all ranged between .82 and .98. Intraclass correlation coefficients for individual subscales and the total scale were found to range between .78 and .87 in this study.
EORTC QLQ-BR23 questionnaire
This questionnaire was designed to measure disease symptoms, side effects, body image, sexual functioning, and future perspective in patients with breast cancer. The 23-item breast cancer module was designed specifically for use with patients undergoing various treatment modalities during the different stages of breast cancer (Sprangers et al., 1996). The EORTC QLQ-BR23 includes functional subscales and symptom subscales. Two of the functional subscales (body image and sexual functioning) are multi-item, and two (sexual enjoyment and future perspective) are single-item. Three of the symptom subscales (systemic therapy side effects, breast symptoms, and arm symptoms) are multi-item, and one (upset caused by hair loss) is single-item. A 4-point Likert scale (1 = not at all to 4 = very much) is used to score each item. The time frame is "during the past week" for all items except for the sexual items, which is "during the past 4 weeks." The score for each scale or item is converted to a score range of 0-100. On the functional scale/items, a high score means a high or healthy level of functioning. In contrast, a high score on the symptom scale/items means a high level of symptomatology or problems. The Cronbach's alpha coefficients for each subscale were found to range from .70 to .91.
The Vietnamese version of this questionnaire is available on the EORTC website (http://qol.eortc.org), and the authors obtained permission to use the questionnaire from EORTC before beginning the study. Internal consistency was tested in each subscale. In this study, the Cronbach's alpha coefficients for individual subscales ranged from .62 to .95.
Data Collection
During the study period, the researchers met with the participants daily in the cancer ward. Potential participants were patients who met the inclusion criteria, volunteered to participate, and were in sufficiently good health to participate (as determined by their doctors). The researcher explained the purpose and methods of the study to potential participants. After giving consent, the participants were asked to complete the structured questionnaires, the basic demographic information sheet, the TINQ-BC, and the EORTC QLQ-BR23. For those patients unable to write, the researcher read each question out loud and recorded the answer on the questionnaire. The data collection process typically required 15-25 minutes.
Data Analysis
IBM SPSS Statistics Version 22.0 (IBM Inc., Armonk, NY, USA) software was used to manage and analyze the data in this study. Descriptive statistics were used to describe the demographic characteristics, information needs, and the functioning and disease symptoms of the participants. A t test was used to compare information needs by marital status, monthly income, medical payment, and family history of breast cancer. One-way analysis of variance and the Tukey post hoc test were performed to compare information needs by age group, educational level, occupation, disease stage, time since diagnosis group, and treatment type. Bivariate analysis of information needs was used to investigate correlations with body functioning and disease symptoms. Finally, multiple linear regression analysis was performed to identify the factors that affected information need. The independent factors considered included age, marital status, educational level, monthly income, occupational status, treatment type, and the functioning and symptoms subscales of the EORTC QLQ-BR23.
Results
General Characteristics of Participants
The general characteristics of the 130 participants in this study are presented in Table 1. The age range was 22-70 years (mean age = 47.06 +/- 9.40 years), with 68.5% between 40 and 59 years old; 96.2% were married; 40.8% were employed in the public or private sector, 29.2% were retirees and housewives, and 20.8% were farmers; 57.7% had completed senior high school; 29.2% had a below-average monthly income; and 29.2% received health insurance coverage for their hospital fees. Most of the participants had been diagnosed with Stage II (41.5%) or Stage III (48.5%) breast cancer, and 95.4% had no known family history of breast cancer.
Statistics from the t test and one-way analysis of variance showed that the mean scores for information needs significantly differed by educational level (p = .001), monthly income (p = .013), and surgery type (p = .041). Further comparisons using the Tukey post hoc test revealed information needs to be positively associated with having an educational level of senior high school or above, having a high monthly income, and having another surgery type than modified radical mastectomy (MRM). Other demographic characteristics and disease characteristics showed no significant differences in terms of information needs.
Ranking of Information Needs
As shown in Table 2, the mean total score for information needs was high (218.04/260.00, 83.9%). The highest score was for the "disease" subscale, followed in order by the "treatment," "investigative test," and "physical" subscales. The "psychosocial" subscale earned the lowest score of the five subscales.
Highest Information Needs in Vietnamese Women With Breast Cancer
The top 10 highest items in terms of information need included five items in the "disease" subscale, three items in the "treatment" subscale, one item in the "physical" subscale, and one item in the "investigative test" subscale. The highest ranked item was "how to know if the cancer has come back" in the "disease" subscale (Table 3). The top five highest ranked items included "what the results of blood tests mean," "what side effects I should report to the doctor/nurse," "if it is known what causes breast cancer," and "which foods I can or cannot eat."
The Relationship Between Body Functions and Disease Symptoms and Information Needs
The body functions score was low and the disease symptoms score was high among the participants (Table 4). For the functional scale/item, a high score indicates a high or healthy level of functioning. On a scale of 0-100, none of the functional scales earned average participant scores over 50, indicating that participants had, on average, low physical function. The highest score among functional scales was body image (41.67). Participants seemed unsatisfied with their sexual life (sexual enjoyment = 33.33, sexual functioning = 16.67). In addition, the score for "future perspectives" was extremely low (0.00), indicating a very poor future perspective. Among symptom scales, the most severe symptom problem was "upset caused by hair loss." Moreover, bivariate analysis revealed body image, future perspectives, breast symptoms, arm symptoms, and upset caused by hair loss all correlated significantly with level of information need with Pearson (r) scores of -.159 (p = .035), -.414 (p < .001), .189 (p = .016), .197 (p = .012), and .223 (p = .005), respectively.
Factors Influencing Information Needs in Vietnamese Women With Breast Cancer
Using stepwise multiple regression, the dependent variable was information needs, and the independent variables were age, marital status, educational level, monthly income, occupational status, treatment type, physical functioning subscales, and disease symptoms subscales. According to the statistical analysis results, factors that significantly affected information needs in this population were future perspective, educational level, and monthly income (Table 5). Specifically, after controlling for other variables, lower scores of future perspective (more negative future perspectives; [beta] = -.429, p < .001), a higher educational level ([beta] = .195, p = .025), and a higher income level ([beta] = .194, p = .026) were associated with higher information needs compared with their counterparts with a high level of future perspective, a lower educational level, and a lower monthly income. These factors explained 28.2% of the variance in the need for information about breast cancer in this population. Among these factors, negative future perspective was the best predictor of higher information needs (17.1%), followed by higher educational level (8.2%) and higher income level (2.9%).
Discussion
This study was the first to use a validated instrument to investigate the information needs of Vietnamese women with breast cancer. The analyses of relationships among sociodemographic factors, health characteristics, body functions, disease symptoms, and information needs in this population revealed information needs as high and information needs to be significantly associated with educational level, monthly income, and future perspective. The highest TINQ-BC subscale score was for the disease subscale, followed by the treatment, investigative test, physical, and psychosocial subscales. Future perspective, income level, and educational level were important determinants of information needs, explaining 28.2% of the variance in the need for information about breast cancer.
Information needs were found to be significantly associated with monthly income, educational level, and future perspective. Information needs revealed positive associations with monthly income and educational level and a negative association with future perspective. These findings are in line with previous studies conducted in Iran (Kimiafar et al., 2016) and the Netherlands (Douma et al., 2012). Kimiafar et al. reported that women with higher educational levels had a higher need for information about their disease and its treatment compared with those with lower educational levels. In another study, the information needs of women with breast cancer were found to be low when their income and educational levels were low (Douma et al., 2012). Similarly, Vietnamese women with lower monthly incomes usually have a relatively low level of education. Women with less education may lack the ability to discuss their disease and its treatment and may unquestioningly follow the instructions of healthcare professionals. This population of women is particularly vulnerable to the effects of breast cancer because they have less information and/or knowledge of the disease, lower financial means, and more uncertainty about the future compared with other women in better social conditions. Therefore, breast cancer care for women with low income and educational levels should also emphasize the proactive provision of health-related information.
The most important information needs category in this study was "cancer recurrence." "How to know if cancer has come back" and "If the breast cancer will come back" were the two major concerns related to "cancer recurrence" in this study. Because breast cancer is considered the most curable of all cancers (Kandola, 2018), some patients may not consider breast cancer a catastrophic illness. However, in Vietnam, women are rarely diagnosed with breast cancer until later disease stages (Nguyen et al., 2016; Thuan et al., 2016), at which time effective treatment is difficult and costly and the mortality rate is relatively high. Of the 21,555 new cases of breast cancer diagnosed in Vietnam in 2020, 9,345 were fatal, indicating a mortality rate of 43.35% (International Agency for Research on Cancer, World Health Organization, 2021). Some of the participants in this study addressed their concerns by actively preparing for their impending fight against breast cancer; one example of this is the aggressive search for information about breast cancer recurrence. Moreover, the fear of recurrence is an essential factor affecting postprimary therapy adjustment in breast cancer women, earning the highest factor loading when conducting confirmatory factor analysis of the stress scale, especially in younger women with breast cancer (Peng et al., 2021). Thus, implementing an effective self-care intervention for younger patients with breast cancer, which represents a majority of the breast cancer population in Vietnam, is necessary as soon as possible postdiagnosis.
Failure to provide palliative care, poor communication with healthcare professionals, and not providing information about the disease and current treatment have been shown in several studies (Jenkins et al., 2020; Pham et al., 2019) to result in psychological distress, including depression and concern about future health prospects. The healthcare system in Vietnam lacks sufficient resources to accommodate the large number of new cancer cases diagnosed each year. The insufficient number of healthcare professionals with training and expertise in cancer care negatively influences the patient-provider relationship. High caseloads in hospitals limit opportunities for patients to communicate with their doctors and nurses. Under these conditions, healthcare providers tend to focus on treatment-related activities only. Communication with healthcare providers is usually short and does not include support or information provision (Jenkins et al., 2020). For example, the extremely high regular caseload at the Vietnam National Cancer Hospital may result in up to four patients sharing a single hospital bed. Nurses spend most of their working hours attending to their professional responsibilities such as administering intravenous, preparing medication, and documenting treatment and tasks completed. Other care-related activities such as communicating, assessing, and educating are often deficient. The Vietnam Ministry of Health (Health Partnership Group, Vietnam Ministry of Health, 2015) reported that the national healthcare system lacks healthcare workers with sufficient knowledge and skills related to cancer treatment and can currently meet only 30%-40% of the demand for cancer services. The above factors (diagnosis at a late stage of disease, treatment difficulties, poor communication with healthcare professionals, insufficient palliative care, and insufficient disease-related information) also explain why patients with breast cancer in Vietnam adopt a negative perspective of the future, experience severe side effects of systemic therapy, and have high needs for information related to "disease," "treatment," and "investigative tests."
Information related to treatment was the second highest information need found in the sample, with three of the 10 highest information needs in this subscale. Most of the high-need items in the "treatment" subscale relate to side effects. A previous survey (Chow et al., 2020) of supportive needs in women with breast cancer in Singapore similarly reported a high need for information related to treatment side effects. Chow et al. reported that information about treatment and treatment options (including side effects) and information about treatment for side effects ranked among the top three needs of patients with breast cancer and their caregivers at the time of diagnosis. In this study, the "systemic therapy side effect" earned the second highest score among the symptom scales. The current treatment protocol for breast cancer in Vietnam is based on protocols designed for low- and middle-income countries, which include many of the medicines frequently used for breast cancer treatment in Vietnam in first-generation chemotherapeutic regimens, for example, Adriamycin and cyclophosphamide (Bazargani et al., 2015). These first-generation regimens present a high risk of side effects. Therefore, side effects of chemotherapy are common in low- and middle-income countries. In addition, most patients with breast cancer in Vietnam are diagnosed at an advanced stage. Accordingly, the most common treatments for breast cancer in Vietnam are MRM and chemotherapy, as the health equipment required for radiation therapy is extremely limited in Vietnam. The widespread use of MRM and chemotherapy in women with breast cancer in Vietnam also explains the high scores in "hair lost" and "systemic therapy side effect" subscales obtained in the study population and the high information needs related to treatment side effects.
The "investigative test" subscale score was the third highest of the subscales. This subscale includes the item "Meaning of blood test results," which ranked second among the 10 highest information needs. The results for this subscale differed from those reported for patients with breast cancer in Ethiopia (Legese et al., 2021) and Japan (Miyashita et al., 2015). No items in the "investigative test" subscale ranked among the 10 highest information needs of Ethiopian women. In addition, a survey of Japanese women with breast cancer (Miyashita et al., 2015) also indicated that healthcare workers had adequately informed them about the "results of diagnostic tests and follow-up tests." Possible explanations for this contrary finding include inadequacies in knowledge and an excessive workload borne by healthcare professionals, as mentioned above. Consequently, lack of well-trained healthcare professionals and human resources for cancer care services reduces the quality of care available to patients with cancer in Vietnam.
The score for the "physical" subscale was the fourth highest of the five subscales, and only one item, "Which foods I can or cannot eat," ranked among the 10 highest information needs. A survey of women with breast cancer in Japan (Miyashita et al., 2015) similarly revealed that only 57.1% of the women had received nutritional information from medical professionals. Another study performed in Iran, a developing country, investigated information needs and information-seeking behavior in patients with breast cancer. Again, "Nutritional options during treatment" was the information need cited most frequently by the participants (Berezowska et al., 2019; Kimiafar et al., 2016). Women with breast cancer seem to require information related to nutrition and diet regardless of whether they live in developed or developing countries. Although treatment guidelines and nutritional guidelines for patients with breast cancer do not substantially differ by country, cultural differences in terms of food preferences, food preparation and cooking methods, and other aspects may affect nutritional and dietary recommendations. For example, food preferences in Vietnam differ among northern, central, and southern regions of the country. The main sources of protein in the north are pork, chicken, and fish, whereas the diet in central and southern regions includes more seafood and tropical fruits. In addition, central and southern Vietnamese diets tend to be more oily, spicy, and salty than the diet in the north. Therefore, comprehensive and culturally suitable nutritional information and recommendations for patients with breast cancer should vary not only by country but also by region.
Health-related information targeting women with breast cancer in Vietnam should be provided in informational pamphlets rather than online, although useful health-related information may be obtained quickly and easily online using various devices (e.g., cellular phones, tablets, and laptops). For women with breast cancer in Vietnam, the Internet is not the best source of information about breast cancer. First, the quality of medical information available online in Vietnamese is highly inconsistent. Information is often provided by a third party rather than by healthcare organizations, facilities, or hospitals. Before accepting information as reliable, patients should consult healthcare professionals to confirm its accuracy. Second, because reliable medical information is usually in English, patients with a low educational level may have difficulty accessing reliable information. Finally, many patients with breast cancer are from families of farmers in rural provinces of Vietnam. Most patients are older adults who may have difficulty bearing the financial burden of cancer treatment. Thus, compared with patients who are younger and/or reside in urban areas, the typical patient with breast cancer is less likely to use smart devices to access breast cancer information via the Internet. Notably, women with breast cancer reportedly prefer information provided in writing or as take-home educational material (Kimiafar et al., 2016; Villarreal-Garza et al., 2019) from their doctors or nurses (Legese et al., 2021; Sakai et al., 2020). Moreover, because women with breast cancer undergoing chemotherapy usually require a full day to complete their infusion, healthcare professionals may use videos to provide information on monitors in treatment rooms or lounge/waiting areas. In addition, hospitals may operate hotlines to provide information to breast cancer outpatients, as these patients are expected to spend most of their time at home during treatment and follow-up periods.
Furthermore, as mentioned above, Vietnamese women with breast cancer face a higher risk of psychological distress because of the severe lack of palliative care availability (Pham et al., 2019) and poor communication with healthcare workers (Jenkins et al., 2020). Evidence suggests that successfully managing demoralization in breast cancer survivors reduces stressful feelings and death anxiety and improves psychological well-being (Peng et al., 2021). Demoralization includes an expression of existential distress, hopelessness, helplessness, and loss of meaning and purpose in life, comprehensively mediating the effect of stress on sleep disturbances and predicting the impact of sleep disturbances on psychological well-being.
Limitations
This study was affected by several limitations. First, this study applied a cross-sectional design in a convenience sample, which limits the generalizability of the results and limits the ability to infer causal relationships among study variables. Second, the sample was recruited from only one hospital located in northern Vietnam. Therefore, the findings may not fully explain the information needs of all women with breast cancer in the country. Finally, the questionnaire used to collect data in this study was originally developed for a study of women with breast cancer in North America. Despite the rigorous process used to translate the instrument, the resulting questionnaire may not account for important cultural differences between breast cancer populations in North America and Vietnam.
Conclusions and Implications
Several benefits of current cancer services for women with breast cancer in Vietnam and in other low- and middle-income countries were revealed in this study, which identified the self-perceived information needs of these patients and the determinants of these needs. Healthcare providers should note that, in women with breast cancer, information needs tend to be higher in women with a negative future perspective, a high educational level, and a high monthly income. The findings also showed that women with breast cancer desire more information about their disease, particular with regard to cancer recurrence, treatment side effects, investigative tests, and dietary guidelines. Finally, the findings suggest several effective methods of providing information, including informational pamphlets, videos that patients can watch on monitors situated in treatment rooms or lounge/waiting areas, and hospital-operated telephone hotlines.
Acknowledgments
This article is part of a project undertaken between Kaohsiung Medical University and Hanoi Medical University. This research was funded by the Ministry of Education (New Southbound Academic Medicine Field Alliance plans academic research collaboration), Taiwan (TB0357, TB0387); the Ministry of Science and Technology, Taiwan (MOST 108-2635-B-037-007-); and the Kaohsiung Medical University, Taiwan (Grant Number KMU-M110005). We thank our colleague Mrs. Nguyen Thi Thanh Huong from Hanoi Medical University who collaborated on this research. We also thank our colleagues Mr. Neil Bowman (Australia) and Ms. Christina M Clarke (Wake Forest School of Medicine, United States) for their valuable suggestions on the contents of this article.
Author Contributions
Study conception and design: NTS, HTH
Data collection: NTS, TQT
Data analysis and interpretation: NTS, HTH
Drafting of the article: NTS, PTTH
Critical revision of the article: NTS, HTH
References