Practice, Effectiveness and Factors Affecting Self-care Behaviors in Managing Chemotherapy Side effects in Breast Cancer Patients

Abstract

Background and Rationale: Chemotherapy is one of the main treatment modalities for breast cancer, however, it has many side effects. Good patients’ self-care practice to manage and cope with chemotherapy side effects can help the patients to alleviate the severity of these side effects, and improve their quality of life. This study was conducted to assess the practice of self-care behaviors among breast cancer patients receiving chemotherapy at the National Cancer Institute (NCI), Cairo University (CU), and their effectiveness in alleviating the chemotherapy side effects, as well as detecting factors influencing self-care practice.

Patients and Methods: This is an observational cross sectional study that included adult females (> 18 years), who received at least 2 chemotherapy cycles, as outpatients at NCI. A convenience sample of 178 patients was recruited. Personal interviews and revising medical records were performed to collect the relevant data.

Results: The mean age of the patients was 47.76 ± 10.5 years. The majority of the study participants were married (88.8%) and residents of urban areas (61.2%). 32.6% of them were illiterate. The overall self-care practice was 48%. Age, stage of the disease and number of experienced side effects had significant effects on the self-care behavior.

Conclusion: Breast cancer patients show moderate level of self-care behavior in managing chemotherapy side effects. This highlights the need for engaging the patients into their own management by providing adequate education, and encouraging them to practice proper self-care behaviors.

Introduction

Breast cancer is the most common cancer among females worldwide ^[1]. Significant proportion of breast cancer patients receive chemotherapy ^[2].The chemotherapeutic agents have numerous side effects ^[2]. These side effects adversely affect the patients’ quality of life, and constitute a burden on the health care system ^{[3] [4]}.

Chemotherapy treatment is now mainly an outpatient procedure. Therefore, engaging patients in their own care and self-management of chemotherapy side effects at home is important issue for tolerating cancer treatment ^[5]. A shift has occurred in the perception of the role of health-care providers from one in which healthcare experts provide care to passive recipients (patients) to one in which providers support and empower patients as they take primary responsibility for their health ^[6].

Self-care is defined as “activities performed by individuals to achieve, maintain, or promote maximum health” ^[7]. It involves the ability to make decisions and perform actions, thus it is directed toward activities under the control of the individual. Self-care is situation specific and culturally influenced, and is affected by a variety of individual and environmental characteristics ^[6]. Maintaining proper and adequate self-care behaviors in cancer patients is associated with better quality of life ^[8].

The aim of this study is to assess the practice of self-care behaviors among Egyptian breast cancer patients for managing chemotherapy side effects, and to determine the effectiveness of these measures in alleviating the severity of the side effects.

Patients And Methods

• Study design and settings:

The present study is a cross sectional observational study. The study was conducted at the medical oncology outpatient clinic of National Cancer Institute (NCI), Cairo University (CU), Egypt. Recruitment of patients started from first of November 2019 to end of March 2020, it was done in unfixed three days per week through convenience sampling method.  

• Study population and eligibility criteria:

- Inclusion criteria:

Adult females (> 18 years old), diagnosed as breast cancer patients who received at least 2 cycles of chemotherapy in outpatient settings.

- Exclusion criteria:

Patients who received chemotherapy outside NCI or as inpatients.

• Compliance with Ethical Standards:

- IRB approval and consent:

The study protocol and a consent form were reviewed and approved by the Institutional Review Board (IRB) of the NCI, CU (IRB Approval Number: 201902007.4.). An informed consent was taken from each patient after explanation of the study details and the patients’ rights. 

- Privacy and confidentiality:

Throughout the study the privacy and confidentiality of the data were preserved, the results were presented anonymously without disclosure of patients’ personal identifying information.  

• Data Collection Tool:

A data collection sheet was developed by the researcher. The data was collected through personal interviews as well as revising the patients’ medical records. It included the following parts:

- First part: Socio-demographic and clinical characteristics of the patients

- Second part: Self-care behaviors and chemotherapy side effects: The experience of different chemotherapy side effects was assessed. Patients who experienced each side effect were asked whether they practiced the self-care behaviors to manage this side effect. Then among patients who applied each self-care behavior; its effectiveness was assessed. 

- The practice of self-care behaviors for managing each side effect is reported. It is a percentage value, and represents self-care behaviors practiced by patients for managing a given side effect out of the maximum expected self-care behaviors to be practiced by the patients for managing this side effect. 

- The content and face validity of the data collection tool was revised by experts.

• Pilot study and pretesting:

A pilot study was conducted on 15 patients to evaluate the feasibility of the data collection tool, it was aiming at assessing ability of the patients to easily understand and answer the questions, and estimating the appropriate sample size for the full scale study. The pilot study showed an overall self-care practice of 42 %.

• Sample size estimation: 

For the present study; the primary outcome is the practice of self-care behaviors, which was estimated to be 42% in the pilot study. By using EpiInfo7 software, setting an acceptable error of ± 0.08; the minimum required sample size for the full scale study is 146 patients.

• Compliance rate:

For a total of 190 patients who were approached to be involved in the study; 178 patients approved to participate in it, and completed the interview with a refusal rate of about 6.3%. Refusal to participate in the study was related to different causes. 5 patients (2.6%) did not have enough time to participate in the study. 7 patients (3.7%) were feeling tired and not able to undergo the interview. 

• Statistical methods:

All statistical calculations were done using SPSS (Statistical Package for the Social Science; SPSS Inc., Chicago, IL, USA) version 25. Data were statistically described in terms of mean and standard deviation, number and percentages when appropriate. For comparing categorical data, Chi square (χ²) test was performed. Practice of self-care behaviors for individual patients was classified into good and poor levels of self-care behavior. Univariate associations were performed between the level of self-care behavior and the different socio-demographic and clinical factors. Then Binary Logistic Regression analysis was applied, in which the outcome variable was the level of self-care practice. Explanatory variables were the variables that showed associations with the level of self-care practice in the univariate analysis with significance level < 0.1. The model was built by using Forward LR method. P-value was 2 tailed, and set significant at 0.05 level.

Results

The mean age of the patients was 47.8±10.5 years, and ranged from 22 to 74 years. Patients who were younger than 50 years were 61.2% of the patients. The majority of the patients were married, residents of urban area and housewives. One third of the patients were illiterate, and 74.7% were diagnosed within 1 year of the study interview. 7.9%, 55.7% and 36.4% of the patients had localized, locally advanced and metastatic disease respectively (Table 1). 

Table 1

Socio-demographic and clinical characteristics of the study participants (n=178).

*SD: Standard Deviation

**IQR: Interquartile Range

***The remaining number of cases (total cases=178) had missing data or not reported. 

Prevalence of chemotherapy side effects, practice and effectiveness of self-care behaviors:

The most commonly experienced side effects were hair loss, fatigue and mouth dryness followed by oral and gastro-intestinal side effects (Table 2).

Table (2)

 The prevalence of common chemotherapy side effects among breast cancer patients (n=178).

 The practice and effectiveness of self-care measures:

The practice of self-care behaviors ranged from moderate (64.4% for managing paraesthesia, 56.4% for managing mouth sores and 54.7% for managing taste alteration) to low level (23.3% for managing cognitive disorders and 26.9 for managing hair loss)    (Table 3).

Some self-care measures were observed to be practiced by small proportion of patient although they were reported to be effective by high proportion of patients who practiced them. An example is eating small frequent meals for managing anorexia was practiced by 33% of patients who experienced it, although it was reported to be effective by 75.6% of the patients who practiced it. Also adding lemon, orange or mint to drinking water for managing taste alteration was practiced by 32.0% of patients who had taste alteration, and it was considered an effective self-care measure by 82.5% of patients who practiced it (Table 3).

The overall practice of self-care behaviors for all side effects was 48%. It represents the total number of practiced self-care behaviors for managing all chemotherapy side effects by the patients out of the maximum expected number of self-care behaviors to be practiced by the patients (Table 3).  

Table (3)

The practice and effectiveness of self-care behaviors. 

* Practice was calculated from those who experienced each side effect.

** Effectiveness is calculated from those who practiced each self-care behavior. 

Associations and possible independent effects of different socio-demographic and clinical factors on the level of self-care behavior.

The practice of self-care behaviors for individual patients was categorized into good and poor levels. The overall self-care behaviors practice was 48%, patients who showed total self-care behaviors application below 48% were considered to have poor level, while patients who showed total self-care behaviors application equal or above 48% were considered to have good level.

On the univariate analysis level; being above 50 years was significantly associated with good level of self-care behavior (P value: 0.025). Patients who received any level of education showed significantly good level of self –care compared to illiterate patients (P value: 0.042). Having localized disease was significantly associated with good level of self-care behavior (P value: 0.010). Surprisingly, patients who experienced fewer side effects (≤ 6 side effects) showed significantly higher proportion of good level of self-care behavior compared to patients who experienced more than > 6 side effects (P value: 0.022). Getting information from media (Internet and Television) was found to be significantly associated with good level of self-care behavior (P value: 0.033). 

Binary logistic regression model was built, where the level of practice of self-care behavior was the dependent variable. The model contained 5 independent variables (age, educational level, tumor stage, number of side effect experienced and getting information from media sources). These factors had significant associations with the level of self-care practice at the univariate analysis. However, only three independent factors (age, tumor stage and number of experienced side effects) made unique statistically significant contribution to the model. The model showed that patients aged over 50 years were 2.3 times more likely to have good level of self-care practice compared to patients who were 50 years old or younger (OR: 2.41, P value: 0.007). Patients who had locally advanced disease were 88% less likely to have good level of self-care compared to patients who had localized disease (OR: 0.12, P value: 0.008). Patients who had metastatic disease were 81% less likely to have good level of self-care behavior compared to patients who had localized disease (OR: 0.19, P value: 0.044). Patients experiencing higher number of side effects (> 6 side effects) were 55 % less likely to have good level of self-care practice compared to patients experiencing fewer side effects (≤ 6 side effects) (OR: 0.45, P value: 0.042). 

Discussion

The results from the present study demonstrated that participants had experienced multiple side effects during chemotherapy; however, the practice of self-care strategies was found to be 48%. Zhang et al had slightly different results in their study. They assessed self-care behaviors in 97 breast cancer patients receiving chemotherapy in China and found a moderate to high self-care behavior level. This can be explained by the difference in the sociodemographic and clinical characteristics of patients in the two studies. The illiteracy represented 32.6% of the current study patients, meanwhile only 5.2% of patients in Zhang et al study were illiterate. Also they had 2.1% of the cases in stage IV compared to 36.4% of the cases in the present study classified as distant metastasis stage. An important point to consider is that Zhang et al used different tool which may have contributed to this difference ^[9].

Regarding fatigue, the present study showed moderate to low percent of self-care behavior for managing fatigue (43%). Receiving support from family and friends was the most used method, it was practiced by 64.4% of patients. 95.1% of the study participants who were practicing it reported it as an effective method in managing fatigue. An observational study was performed by O’Regan et al on 362 cancer patients receiving chemotherapy in Southern Ireland. The study aimed at assessing fatigue during chemotherapy period and evaluate the practice and perceived efficacy of self-care strategies. The most used and most effective self-care method was receiving support and help from family and friends (practiced by 66.6% of the patients). It was perceived as an effective method by 60.4% of the patients ^[10]. Similar practice level (64.45%) and higher perceived efficacy (95.1%) were detected in the present study. 

Anorexia, nausea and vomiting were experienced by about two thirds of the study participants, the self-care behavior performance was moderate (50%). Lou et al assessed the self-management of chemotherapy-related nausea and vomiting in a cross-sectional survey involving 255 cancer patients. A moderate to low level of self-care behaviors was reported. Most self-management behaviors were rated as moderately effective. However, they noted higher practice of dietary modification measures. Eating small frequent meals was practiced by 63.1% of the cases compared to 33.3% in the present study. 75.6% of the patients who used it in the current study considered it an effective method in managing these side effects. Avoiding strong smell of food through eating food at room temperature was practiced by 52% in Lou et al study compared to 28% in the current study ^[11]. The lower practice of dietary modification methods in the present study despite their good efficacy may be related to lack of knowledge about the proper behaviors to cope with anorexia, nausea and vomiting. Other possible factor is that Lou et al included both inpatient and out patients in their study, the inpatients may be under closer supervision of the physicians and nursing staff, providing them with information and enhancing them to practice proper behaviors ^[11].    

Regarding mood disturbances, despite the high prevalence and importance of this side effect, the self-care practice was low (32.8%). Receiving social support from family and friends and practicing relaxation activities were the most commonly reported measures (46.2% and 45.5% respectively), and they were perceived as effective methods by the majority of patients who practiced them (93.5% and 98.4% respectively). This high efficacy is supported by the findings of Pinar et al, who detected that social support is associated with low levels of anxiety and depression and higher scores of QOL in their study on 187 Turkish women with gynecologic cancer ^[12]. The low self-care in the current study may be related to lack of knowledge about the importance and potential effect of self-cafe behaviors on mood disturbance. Other possible explanation is that patients with psychological distress, especially severe clinical form of anxiety and depression, may be less able and less motivated to undertake self-care practices. Attending psychological counseling session was the least practiced method (5.3%), yet it was perceived as an effective method by all patients who practiced it. Lack of daily psychological counseling service to meet all patients’ needs as well as geographical inaccessibility may have contributed to the low utilization.

In the current study, older age (>50 years) had a statistically significant association with good level of self-care behavior compared to younger age (≤50 years) (p value= 0.025). By entering the age in a binomial logistic regression model, patients above 50 years were 2.4 times more likely to have good level of self-care behavior compared to patients who were 50 years old or younger. Zhang et al had almost similar findings. They analyzed the associations between different socio-demographic and clinical factors with the self-care behavior in breast cancer patients. They observed significant weak direct correlation between the age of participants and the self-care behavior (r = 0.232, p < 0.05) ^[9]. 

Study limitations:

The study participants were recruited through convenience sampling method. This non-probability sampling technique results in less representative sample of the population of women with breast cancer and make the study more liable for selection bias.

The study is a cross sectional survey measuring prevalence. It provides a “snap shot” picture of the current situation, it doesn’t take into consideration the possible fluctuations in the severity of side effects and in the frequency of practicing the self-care behaviors along the time line. Occurrence and severity of side effects, practice and efficacy of self-care activities depend largely on the patient’s perception and recall. Therefore information bias may affect these measures. 

Declarations

• Funding: The authors declare that no funds, grants, or other support were received during the preparation of this manuscript.
• Competing Interests: The authors have no relevant financial or non-financial interests to disclose.
• Author Contributions: All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Aya A. Amin, Dalia N. Aldin. Final results were revised by Heba M. El-Zawahry and Ghada M. Sherif. The first draft of the manuscript was written by Aya A. Amin and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
• Ethics approval: This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of Cairo University (Approval Number: 201902007.4.).
• Consent to participate: Informed consent was obtained from all individual participants included in the study.
• Consent to publish:The manuscript does not contain any personal identifying information in any form. 
• Acknowledge: Great thanks to all the staff and members of biostatistics and cancer epidemiology department and the working staff in the Breast Cancer Hospital of the National Cancer Institute for their help and support.

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