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 (Blödt 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 (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.

Table 1 - Differences in Information Needs, by Patient Characteristics (N = 130) Characteristic n % Information Needs M SD t or F p Significant Pair From Pairwise Comparison Age (years) 1.940 .148  ≤ 39 28 21.5 226.54 24.47  40–59 89 68.5 217.19 33.20  ≥ 60 13 10.0 205.54 42.39 Marital status 1.463 .146  Single 5 3.8 239.00 25.17  Married 125 96.2 217.20 32.88 Educational level 7.172 .001  ① Primary school 10 7.7 189.80 47.94 ③ > ①  ② Junior high school 45 34.6 211.69 34.44  ③ Senior high school or above 75 57.7 225.61 26.48 Occupation 1.673 .176  ① Employee/businesswoman 53 40.8 224.15 26.55  ② Farmer 27 20.8 212.30 32.56  ③ Retiree/housewife 38 29.2 218.11 32.98  ④ Laborer 12 9.2 203.75 51.42 Monthly income −2.567 .013  ① < Average monthly wage 38 29.2 204.37 43.39 ② > ①  ② ≥ Average monthly wage 92 70.8 223.68 25.50 Medical payment 0.672 .503  Insurance 38 29.2 221.05 34.13  Partial self-paid 92 70.8 216.79 32.36 Home location 0.535 .594  Province 72 55.4 216.65 34.29  Hanoi City 58 44.6 219.76 31.09 Family member with breast cancer 1.016 .311  Yes 6 4.6 231.33 30.83  No 124 95.4 217.40 32.88 Stage of breast cancer 0.261 .771  I 13 10.0 224.31 29.09  II 54 41.5 217.28 32.51  III 63 48.5 217.40 34.11 Time since diagnosis with breast cancer (months) 0.524 .593  < 6 59 45.4 219.19 38.88  6–12 22 16.9 211.50 19.18  > 12 49 37.7 219.59 29.70 Treatment therapy 0.126 .723  Neoadjuvant chemotherapy 27 20.8 216.04 47.40  Adjuvant chemotherapy 103 79.2 218.56 28.06  Surgery 103 79.2 3.267 .041   ① Modified radical mastectomy 87 84.5 215.11 28.12 ② > ①   ② Other 16 15.5 237.31 19.39

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.

Table 2 - Ranking of Information Needs Based on Toronto Information Needs Questionnaire Subscale Scores (N = 130) Subscale a No. of Items Range Mean SD % Rank Disease 9 15–45 39.54 5.46 87.9 1 Treatment 16 21–80 68.63 10.04 85.8 2 Investigative test 8 15–40 34.22 5.18 85.6 3 Physical 11 13–55 43.86 7.47 79.8 4 Psychosocial 8 10–40 31.79 6.35 79.5 5 Total score 52 74–260 218.04 32.81 83.9

a A high score is interpreted as a high need for information. A higher proportion indicates a higher need for information.

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.”

Table 3 - Ten Highest Information Needs of Women With Breast Cancer (N = 130) Item Rank Mean SD Subscale 42. How to know if the cancer has come back 1 4.72 0.59 Disease 19. What the results of blood tests mean 2 4.67 0.59 Investigative test 29. What side effects I should report to the doctor/nurse 3 4.59 0.64 Treatment 14. If it is known what causes breast cancer 4 4.58 0.70 Disease 43. Which foods I can or cannot eat 5 4.56 0.85 Physical 32. How long I will be receiving treatment 6 4.53 0.82 Treatment 9. If there are ways to prevent treatment side effects 7 4.51 0.76 Treatment 2. If the breast cancer will come back 7 4.51 0.77 Disease 50. If my illness is hereditary 9 4.50 0.80 Disease 10. How the illness may affect my life in the future 10 4.49 0.71 Disease
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.

Table 4 - Correlation Between Information Needs and Body Functions and Disease Symptoms (N = 130) EORTC QLQ-BR23 Scale/Item Range Median Mean SD Information Needs Pearson (r) p Functional scales a  Body image 0–100 41.67 46.99 28.04 −.159 .035  Sexual functioning 0–67 16.67 18.79 19.77 .033 .357  Sexual enjoyment 0–67 33.33 21.03 22.02 .008 .465  Future perspective 0–100 0.00 17.69 29.70 −.414 < .001 Symptom scales b  Systemic therapy side effects 0–86 47.62 45.93 18.37 .102 .124  Breast symptoms 0–100 25.00 23.33 15.95 .189 .016  Arm symptoms 0–100 22.22 23.76 16.99 .197 .012  Hair lost 0–100 66.67 62.31 32.25 .223 .005

Note. EORTC QLQ-BR23 = 23-item Breast Cancer Module of the European Organization for Research and Treatment of Cancer-specific quality-of-life questionnaire module.

a High functional scale score indicates good health condition. b High symptom scale score indicates a high level of symptom/problem.