Factors influencing chemotherapy knowledge in women with breast cancer

Abstract

Background:

Chemotherapy knowledge is linked to managing side effects, reducing exposure to potential infection, and adjusting lifestyle behaviors while going through treatment. However, no research exists regarding the influence of patients’ personal attributes on chemotherapy knowledge.

Aim:

The aim of this study was to describe the relationships of health literacy and demographics on chemotherapy knowledge among women with breast cancer undergoing treatment.

Method:

We used a descriptive, exploratory design with convenience sampling of women with breast cancer receiving intravenous chemotherapy who completed one mandatory education session. Participants completed a demographic questionnaire and three instruments: 1) Rapid Estimate of Adult Literacy – Short Form (REALM-SF); 2) Shortened Test of Functional Health Literacy in Adults (S-TOFHLA); and 3) Leuven Questionnaire on Patient Knowledge of Chemotherapy (L-PaKC). We used univariate linear regression and ANOVA to identify how health literacy and demographics influenced chemotherapy knowledge.

Results:

The REALM-SF (p = 0.022) and S-TOFHLA (p = 0.023) scores were significantly associated with chemotherapy knowledge. Chemotherapy knowledge scores were affected by marital status (p = 0.018) and income (p < 0.001) where married women had significantly higher chemotherapy knowledge scores (M = 92.6, SD = 6.6) than women who were divorced (M = 83.3, SD = 16.7) with a knowledge score difference of −9.3 between the groups (p = 0.02). Comparisons showed significant differences of chemotherapy knowledge between women with differing income levels.

Conclusions:

This study highlights the relevance of considering patients’ health literacy and personal attributes such as marital status and income when teaching about chemotherapy.

More than 72,000 women with breast cancer receive intravenous chemotherapy annually (National Cancer Database, 2018), and many women face difficulty in obtaining, retaining, and applying chemotherapy information necessary to mitigate treatment side effects (e.g., nausea, vomiting, diarrhea, constipation) and lifestyle changes (e.g. avoiding crowds). Nurses can help patients better understand and retain chemotherapy information. Additionally, nurses are instrumental in helping patients apply new chemotherapy information and/or clarify prior beliefs about chemotherapy treatment. Since most chemotherapy is administered on an outpatient basis, patients need to have a basic, fundamental knowledge of chemotherapy and self-efficacy to manage side effects and adjust for lifestyle changes (El-Nemer, El-Zafrani, El-Sayed, & Saadoon, 2015). Following Bandura’s Social Cognitive Theory (1986), one construct fundamental to any behavior change is knowledge (Bandura, 1986). Thus, in applying Bandura’s (1986) theory, chemotherapy knowledge is foundational to patients learning how to manage side effects and lifestyle adjustments necessary for safety while going through treatment (Dodd, 1982).

Chemotherapy knowledge is a concept broadly describing the information obtained by patients about the goals and duration of treatment, possible side effects, lifestyle adjustments, and pregnancy prevention rationale (Coolbrandt, Van den Heede, Jans, et al., 2013). Acquiring and applying chemotherapy information facilitates adherence to chemotherapy cycles (Busch, Martin, DeWalt, & Sandler, 2015; Griffiths & Pascoe, 2014) and increases a patient’s ability to quickly recognize symptom severity and to distinguish those requiring urgent provider care (Gonzalez & Stepan, 2006). While much research exists regarding the application of chemotherapy knowledge in self-care behaviors (Du et al., 2015; El-Nemer et al., 2015; Traeger et al., 2015; Zhang, Kwekkeboom, & Petrini, 2015), there is limited investigation of the facilitators and barriers to gaining chemotherapy knowledge – a rudimentary concept driving behavior change necessary for women applying possibly new skills to manage side effects and make lifestyle adjustments (Bandura, 1986; Coolbrandt, Van den Heede, Clemens, et al., 2013).

Several individual characteristics can affect a patient’s ability to gain chemotherapy knowledge, including a patient’s level of health literacy, demographic factors, and cancer characteristics (Coolbrandt, Van den Heede, Jans, et al., 2013; Dodd, 1982). Health literacy is “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Ratzan & Parker, 2000). Patients with limited health literacy skills may be unfamiliar with vocabulary terms used during cancer education sessions, such as metastasis (Davis et al., 2001), and in turn, may have limited chemotherapy knowledge. Patients with limited chemotherapy knowledge may experience greater hospital admissions (Krzyzanowska, Treacy, Maloney, Lavino, & Jacobson, 2005), increased morbidity (Krzyzanowska et al., 2005), and decreased quality of life (Huynh & Trovato, 2014; Krzyzanowska et al., 2005).

Other factors can also influence how women gain chemotherapy knowledge, including demographic factors such as age, income, education, and marital status (Jiang, Sereika, Bender, Brufsky, & Rosenzweig, 2016; Thomas, 2007). Older patients may have decreased functional and sensory abilities, thereby potentially reducing their capacity to gain chemotherapy knowledge (Gausman Benson & Forman, 2002; Thomas, 2007). Factors such as higher income and greater education levels have been shown to facilitate women’s knowledge and comprehension of their breast cancer and recommended treatment (Jiang et al., 2016). Lastly, marital status is often associated with social support – a protective factor in the cancer treatment experience (Kroenke, Kubzansky, Schernhammer, Holmes, & Kawachi, 2006; Osborne, Ostir, Du, Peek, & Goodwin, 2005). Social support can be instrumental in how women learn and process information about breast cancer treatment options like chemotherapy (Rubenstein, 2015). While research shows how such demographic factors influence knowledge (Oliver et al., 2018; Osazuwa-Peters et al., 2017), little has been done to document the role of demographics in gaining chemotherapy knowledge specifically.

Cancer and treatment characteristics (stage and number of completed chemotherapy cycles) often determine the scope and extent of chemotherapy knowledge a patient needs to learn. More advanced stages of breast cancer can lead to greater anxiety among patients (Villar et al., 2017) and possibly inhibit a patient’s capacity to understand educational information and consequently hinder gains in chemotherapy knowledge (S. Garcia, 2014). The number of completed chemotherapy cycles may influence the level of chemotherapy knowledge needed (American Cancer Society, 2017). Repeated informal chemotherapy education sessions from infusion nurses and treatment team members may increase chemotherapy knowledge attainment (Dodd & Mood, 1981; Rieger & Yarbro, 2003). However, no literature to date exists supporting how the intersection of these factors – health literacy levels, individual demographic factors, and cancer characteristics – affect chemotherapy knowledge acquisition.

Given this gap in the literature, the purpose of this study was to describe the relationships between patients’ health literacy, demographic factors, and cancer treatment characteristics with chemotherapy knowledge among women with breast cancer undergoing intravenous chemotherapy. We hypothesized the following elements would be associated with greater chemotherapy knowledge:

• (H1) individual’s higher level of health literacy;

• (H2) demographics such as increased age, higher income, marriage, and greater education levels;

• (H3) cancer and treatment characteristics (lower stage of breast cancer, more completed chemotherapy cycles).

Further, we surmised two main points: 1) women with lesser stage of breast cancer experience less stress which may indirectly allow her to gain greater chemotherapy knowledge; and 2) women who have undergone more chemotherapy cycles received more informal chemotherapy teachings thereby resulting in greater chemotherapy knowledge. Identifying how individual characteristics impact chemotherapy knowledge may illuminate ways in which nurse educators can positively affect the cancer treatment experience.

Conceptual Model

This study is influenced by Baker’s (2006) conceptual framework for understanding and measuring health literacy. Following Baker (2006), a patient’s individual health literacy determines her potential to understand printed materials containing disease-specific knowledge, such as chemotherapy (S. F. Garcia, Hahn, & Jacobs, 2010; Rieger & Yarbro, 2003). A patient’s ability to understand prose and numeracy will therefore impact his or her ability to gain chemotherapy knowledge. Patients may access numerous printed materials including self-care brochures, drug sheets, and home care information (S. F. Garcia et al., 2010; Smith, Clavarino, Long, & Steadman, 2015), but their comprehension of this material may be limited by their health literacy skills. If a patient cannot easily find, locate, or comprehend information in such documents, Baker’s (2006) framework suggests that she may not be as able to gain chemotherapy knowledge and consequently, not have the knowledge necessary to engage in self-care behaviors.

Method

Participants and Setting

Patients were recruited from a large, mixed-payer, multi-provider comprehensive outpatient oncology center (P. D. Parker, Heiney, Friedman, Adams, & Dawson, 2019). Every patient with cancer starting intravenous chemotherapy treatment at the large outpatient oncology center attended a mandatory one-hour chemotherapy education session. The mandatory chemotherapy education session was led by a chemotherapy nurse educator prior to the administration of any initial chemotherapy. During this time the nurse educator created a therapeutic environment by greeting patients with empathy and warmth. She also employed therapeutic communication skills such as using silence and actively listening to facilitate a nurturing educational environment (Street, Makoul, Arora, & Epstein, 2009). Once rapport was established between the nurse educator and patient, the nurse educator primarily used the chemotherapy teaching booklet as a guide in covering topics. Content of the booklet include drug side effects, nurses’ phone line, and ways to manage side effects (such as bone pain or hot flashes). Patients then had the option to choose from a variety of educational resources (brochures, books, fliers) pertaining to their specific cancers to supplement the chemotherapy teaching booklet if they wished. If an oncologist changed the chemotherapy regimen by adding an additional drug, the nurse educator held another education session specific to the new chemotherapy.

Once the patient attended the education session, the Electronic Medical Record (EMR) was updated immediately by clinical staff to reflect completion of the session. The primary author subsequently reviewed the EMR of all patients attending the outpatient clinic to determine potential participants by screening for gender, type of cancer, and date of chemotherapy education session. The primary author then identified a smaller sample of potential participants using the inclusion and exclusion criteria.

Inclusion and exclusion criteria.

The inclusion criteria for this study included women: (1) with a new diagnosis of breast cancer in the last four months; (2) who could speak English; and (3) were over the age of 18. Women were excluded from this study if they had: (1) a stage IV, metastatic breast cancer diagnosis; (2) breast cancer recurrence; or (3) cognitive impairments. Cognitive impairments were defined as any active psychosis or severe cognitive delays (Heiney et al., 2012). No formal cognitive assessment was completed; instead the primary author used her clinical judgment to determine cognitive ability (Pottie et al., 2016). If any participant showed evidence of cognitive impairments, then they were excluded. Potential participants were no longer eligible for enrollment after they completed their fourth chemotherapy cycle and the primary author ceased recruitment efforts. The primary author completed the data collection session before the fourth chemotherapy cycle to control for the frequency of nurse-initiated instruction.

Recruitment.

Chemotherapy nurse educators gave potential participants a study flier which detailed the purpose and incentives of the study. Then, two methods were used to recruit potential participants. First, participants were encouraged to contact (via e-mail or phone call) the primary author directly if they were interested in the study. Second, the primary author called potential participants and referenced the flier to ascertain interest in the pilot study.

Only one potential participant called the first author as a result of the flier. She met eligibility criteria and was enrolled. The second recruitment method of directly calling potential participants after they received the flier yielded more results. The primary author called potential participants about once a week to ascertain interest. She used the Heiney-Adams Recruitment Framework (HARF), which was designed for data collectors to focus on relationship building while maintaining empathy with participants and being sensitive to the participants’ time (Heiney, Adams, Wells, & Johnson, 2010; Heiney et al., 2012). Every time she spoke with participants or left voicemails, she expressed gratitude and thanked participants for their time using scripts designed by Heiney and others (2010).

If a woman did not answer the phone, the primary author left a voicemail if a messaging system allowed. The first author stopped calling once a woman became ineligible after finishing her fourth chemotherapy cycle, or if a woman declined participation. A woman was considered to be ineligible after she completed her fourth chemotherapy cycle, and the primary author ceased calling. Overall 110 women were contacted based on the screening of the EMR. Fifty-five women did not answer the phone or return the calls, and nine women (16.4%) declined to participate, resulting in a sample of 46 women.

Data Collection

Participants met with the primary author at a location of the woman’s preference to ensure confidentiality and comfort. Prior to collecting data, participants consented and completed a research authorization form. Participant characteristics were obtained using a demographic data form. The primary author then proceeded to administer the remaining three instruments. Word recognition was measured using the Rapid Estimate of Adult Literacy – Short Form (REALM-SF; Arozullah et al., 2007) and functional health literacy was determined using the Shortened Test of Functional Health Literacy in Adults (S-TOFHLA; Baker, Williams, Parker, Ganzmararian, & Nurss, 1999); using both measures gave a more complete description of the patient’s health literacy skills by testing how well patients could read, recognize words, and comprehend content (Jewitt et al., 2016; Kirk et al., 2012). Chemotherapy knowledge was assessed using a revised Leuven Questionnaire on Patient Knowledge of Chemotherapy (L-PaKC; Coolbrandt, Van den Heede, Jans, et al., 2013).

The primary author read the L-PaKC and S-TOFHLA aloud or along with the participant, and the participants completed the REALM-SF without assistance. Reading aloud or along with the participants was a way to help participants feel comfortable and reduce any potential literacy shame (Parikh, Parker, Nurss, Baker, & Williams, 1996; Wolf et al., 2007). Upon completion of data collection, the primary author gave each woman $20 in recognition of their time and contribution. The total time for data collection was approximately 45 minutes. The university’s Institutional Review Board approved this study.

Instruments

Patient demographics.

The 5-item scale, adapted from Heiney (Heiney et al., 2012), was used to collect information on education, marital status, income, and ethnicity.

REALM-SF.

The REALM-SF is a word recognition test designed to assess how well patients read and pronounce isolated words they commonly experience in a primary care setting (Arozullah et al., 2007). The REALM-SF instrument consists of seven words including two control words. Participants are asked to read aloud the list of words in descending order. One point is given to each correctly pronounced word. The range of the scores is 0 to 7 with 7 representing a literacy grade level of greater than 9^th grade. A score of 0 is equivalent to less than 3^rd grade literacy level; a score of 1-3 represents a 4^th-6^th grade literacy level; and a score of 4-6 represents a 7^th to 8^th grade literacy level (Arozullah et al., 2007).

The REALM-SF is a validated instrument with a high correlation (r = 0.83) with another word recognition test, the Wide Range Achievement Test - Revised (Arozullah et al., 2007). This instrument is validated for use in samples with women, African Americans, and participants with limited literacy (Arozullah et al., 2007). Additionally, the REALM-SF has been used in studies with patients with lung cancer (Jewitt et al., 2016) and prostate cancer (Izard et al., 2014; Mahal et al., 2015).

S-TOFHLA.

The S-TOFHLA is designed to measure functional health literacy, comprehension, and numeracy (Baker et al., 1999; R. M. Parker, Baker, Williams, & Nurss, 1995). The S-TOFHLA includes two subscales of four numeracy items and two prose passages to measure reading comprehension. Scores range from 0 to 100 with 0 – 53 representing inadequate functional health literacy, 54 – 66 as marginal functional literacy, and 67 – 100 as adequate functional literacy (Baker et al., 1999).

The two subscales of the S-TOFHLA demonstrated adequate reliability of the numeracy items (α = 0.68) and strong reliability for the prose passages (α = 0.97). The S-TOFHLA has been used in studies surrounding breast (Pagan et al., 2012; Todd, Harvey, & Hoffman-Goetz, 2011) and colorectal cancer (Guerra, Krumholz, & Shea, 2005). The instrument is highly correlated with the original, longer version (r = 0.91; Baker et al., 1999).

L-PaKC.

The L-PaKC is a 20-item instrument with 12 of the items pertaining to general chemotherapy characteristics, eight are related to chemotherapy knowledge, and three are optional (Coolbrandt, Van den Heede, Jans, et al., 2013). The first two authors made minor revisions to the L-PaKC questionnaire using plain language guidelines for an audience with limited literacy skills as agreed by the authors (Coolbrandt, 2016). Sample questions for the patients include understanding chemotherapy duration, the purpose of blood tests prior to infusion, and treatment side effects. The greater the score, the higher the patient’s chemotherapy knowledge.

The L-PaKC demonstrated acceptable reliability (Cronbach’s α = 0.67) and maintained excellent content validity (0.78 – 1.00). The exploratory factor analysis revealed four major domains: 1) general aspects of treatment; 2) negative treatment-related events (side effects, complications, and risks); 3) information resources; and 4) intake of oral chemotherapy. The L-PaKC was only used in the final psychometric validation study but included participants with breast cancer (Coolbrandt, Van den Heede, Jans, et al., 2013). Despite this measure being relatively new with minimal testing, this instrument was ideal because of the unique questions that reflect the material included in the chemotherapy teaching at the outpatient oncology center.

Analysis

Descriptive statistics of frequencies and means were calculated to determine the characteristics of the sample participants. Due to our small sample size, we ran univariate linear regression models with the health literacy scores as the independent variables and chemotherapy knowledge as the dependent variable. We ran one-way ANOVA models for demographic factors as the independent variables and chemotherapy knowledge as the dependent variable. We concluded our analysis with testing the association of cancer characteristics (stage and number of completed chemotherapy cycles) with the dependent variable chemotherapy knowledge. We used SPSS Statistics 23 for all analyses.

Results

Participant demographics are presented in Table 1. A summary of cancer stage and chemotherapy are described in Table 2. The average participants score on the REALM-SF was 6.9 representing a literacy grade level above 9^th grade. Further, the participants had a mean S-TOFHLA score of 95.6 which represented adequate functional literacy. Lastly, the women’s chemotherapy knowledge was rated as a 91 out of a possible 100 score (see Table 3).

Table 1.

Participant Demographics of the Sample (n = 46)

Variables	Total (n = 46)
	n	%
Ethnicity
White	22	47.8%
Black	23	50.0%
Other	1	2.2%
Marital Status
Married	27	58.7%
Single	7	15.2%
Widowed	7	15.2%
Separated/Divorced	5	10.9%
Education
Graduated high school	12	26.1%
Completed technical/trade/Associate’s degree	11	23.9%
Completed four-year degree	13	28.3%
Completed Master’s degree	9	19.6%
Completed Doctorate degree	1	2.2%
Income
< $19,999	5	10.9%
$20 - $29,999	2	4.3%
$30 - $39,999	5	10.9%
$40 - $49,999	4	8.7%
$50,000 and above	25	54.3%
Prefer not to answer	5	10.9%

Note. Reprinted from “The experience of chemotherapy teaching and readability of chemotherapy educational materials for women with breast cancer” by Parker, P. et al., 2019, Journal of Cancer Education, p. 4.

Table 2.

Summary of Cancer and Treatment Characteristics

Variable	n	Percentage
Breast Cancer Stagesa
1A	8	17.4%
2A	18	39.1%
2B	7	15.2%
3A	7	15.2%
3B	1	2.2%
3C	4	8.7%
Chemotherapy*
AC	15	32.6%
AC-T	6	13.0%
PT	1	2.2%
TC	19	41.3%
TCHP	5	10.9%
Completed Cyclesb
0c	2	4.3%
1	31	67.4%
2	5	10.9%
3	8	17.4%

Note.

^aNot yet staged at time of recruitment (n = 1).

^bCompleted cycles at time of data collection.

^cParticipants completed chemotherapy education, but had not yet had first infusion.

^*AC (doxorubicin and cyclophosphamide); AC-T (doxorubicin and cyclophosphamide and paclitaxel); PT (paclitaxel and trastuzumab); TC (docetaxel anhydrous and cyclophosphamide); TCHP (docetaxel anhydrous and carboplatin and trastuzumab and pertuzumab).

Table 3.

Mean Scores for Instruments for Sample (n = 46)

Instrument	Range		Mean	SD
	Min	Max
REALM-SF	5	7	6.9	0.5
S-TOFHLA	69.4	100	95.6	6.2
L-PaKC	58.8	100	91.0	8.4

Univariate regression modeling results for the health literacy instruments with chemotherapy knowledge as the outcome variable are described in Table 4. The REALM-SF (p = 0.022) and S-TOFHLA (p = 0.023) scores were significantly associated with chemotherapy knowledge. A one-unit increase in the REALM-SF word recognition test resulted in a significant 6.252 increase in the chemotherapy knowledge score. Further, a one-unit increase in the S-TOFHLA score resulted in an increase of 0.453 in the chemotherapy knowledge score. The ANOVA results showed chemotherapy knowledge was affected by marital status (p = 0.018) and income (p < 0.001). Comparisons revealed women who were married had significantly higher chemotherapy knowledge scores (M = 92.6, SD = 6.6; M_adj = 90.5, SE = 2.0) than women who were divorced/separated (M = 83.3, SD = 16.7; M_adj = 84.13; SE = 2.8) and had a mean chemotherapy knowledge score difference of −9.3 between the groups (p = 0.02). Additional exploration of the marital status of those without partners (windowed, single) did not reveal any significant differences. Further, chemotherapy knowledge scores were greatest for women with an income of $40-$49,999 (M = 94.4, SD = 6.9). Comparisons showed significant differences of chemotherapy knowledge between groups of women with a yearly income of less than $19,999 compared to those with an income of $30 – 39,999 (M = −12.4, p = 0.03), $40 – 49,999 (M = −14.7, p = 0.12), and greater than $50,000 (M = −14.2, p < 0.001). The remaining demographic variables of age, education, number of completed chemotherapy cycles, and cancer stage were not associated with chemotherapy knowledge. See Table 5.

Table 4.

Univariate Regression Models for Sample (n = 46) with Chemotherapy Knowledge as the Dependent Variable

Independent Variables	β	Significance
REALM-SF	6.252	0.022*
S-TOFHLA	0.453	0.023*

Note.

^*Denotes statistical significance at p < 0.05 level.

Table 5.

ANOVA for Sample (n = 46) with Chemotherapy Knowledge Score as the Dependent Variable

Independent Variables	Means	SD	Adjusted Means	SE
Marital Status
Married	92.59	6.61	90.56	2.04
Single	89.33	6.65	89.22	2.32
Widowed	92.17	6.37	90.73	2.41
Separated/Divorced	83.30	16.72	84.13	2.82
Income
<$19,999	79.74	12.65	77.74	2.82
$20-29,999	93.85	2.33	93.85	4.26
$30-$39,999	92.18	5.32	93.66	3.07
$40-$49,999	94.40	6.92	93.67	3.17
>$50,000	93.91	5.62	94.77	2.12

Note.

^*Denotes statistical significance at p < 0.05 level.

Discussion

The results of this study highlight how certain individual factors are significantly associated with a participant’s ability to assimilate chemotherapy information. An individual’s level of health literacy was significantly associated with chemotherapy knowledge, supporting our first hypothesis (H1). These results confirm previous research demonstrating the relationship of health literacy and cancer-related knowledge (Busch et al., 2015; Morris et al., 2013). While research supports the influence of health literacy on cancer knowledge (Oliver et al., 2018), our results were unique in that we demonstrated health literacy was associated with chemotherapy knowledge.

Our second hypothesis (H2) was partially supported. Results supported that higher levels of income and marriage were associated with greater chemotherapy knowledge scores. These results corroborate current literature documenting the influence of income on cancer knowledge (Jiang et al., 2016). Lower income is associated with reduced diagnostic and treatment delays for women with breast cancer (Maly et al., 2011) and increased depressive symptoms (Schlegel, Manning, Molix, Talley, & Bettencourt, 2012). Further, the stress related to having a lower income may be a limiting factor in generating and retaining chemotherapy knowledge (Langford et al., 2017). Additionally, being married was positively associated with greater chemotherapy knowledge with significant differences compared to women who were divorced. A potential reason for this is that marital status, particularly being married, is often associated with social support and social connection. Marital status is a type of social connection (Kroenke et al., 2006), a phenomenon in which a woman feels connected with individuals and with her community, thereby improving her cancer treatment experience (Heiney, Tavaloki, Millon Underwood, Wells, & Weinrich, 2013). However, women who are divorced or separated do not have similar social support compared to those who are married and may experience greater perceived stress (Dinh et al., 2018). The stress of a cancer diagnosis combined with the absence of a spouse may hinder patients in obtaining and retaining new chemotherapy knowledge. Future research may explore how various social support systems beyond marital status influences chemotherapy knowledge gain and retention.

Our results did not support the hypothesis (H3) that cancer and treatment characteristics would be associated with chemotherapy knowledge. The literature does offer limited evidence that the more advanced stage of breast cancer leads to greater anxiety (Villar et al., 2017), thus we viewed the stage of breast cancer as a potential proxy of anxiety to determine if learning and thereby chemotherapy knowledge was affected. However, our results did not reflect this. In the future, researchers should consider direct measurement of anxiety along with chemotherapy knowledge to test for any mediating effects.

This study highlights the relevance of considering patients’ personal qualities when educating about chemotherapy. The intersection of the level of health literacy with income and marital status create a unique set of patient attributes nurses can consider during chemotherapy education. The nurse can mold the extrinsic qualities of chemotherapy education (materials used, teaching style) to supplement a patient’s intrinsic qualities (such as her level of health literacy and income and marital status) in order to achieve more effective chemotherapy teaching (Valenti, 2014). Through tailored chemotherapy education patients can have better chances at increasing their body of chemotherapy knowledge, which could lead to increased initiation of self-care and enable patients in their decision-making processes throughout treatment (Coolbrandt, Van den Heede, Jans, et al., 2013; Dodd & Mood, 1981).

Limitations

The instruments used in this study had limitations. The S-TOFHLA content consists of questions before an upper gastrointestinal series, which was not relevant to the sample of participants in this study. Also, the primary author read along with or aloud the S-TOFHLA. This could have skewed the results since the instrument was designed to be read without assistance (Baker et al., 1999). REALM-SF is a word recognition and pronunciation test, which does not account for patients’ different cultural backgrounds or those for whom English may not their first language and who may mispronounce common English words. Additionally, the L-PaKC was revised but was not tested for validity. The revision may not accurately reflect the psychometrics of the original tool which demonstrated adequate reliability. Regardless, all of the instruments demonstrated acceptable (Coolbrandt, Van den Heede, Jans, et al., 2013) to exceptional reliability (Arozullah et al., 2007; Baker et al., 1999) and were used in several other populations with diverse populations including patients with breast (Coolbrandt, Van den Heede, Jans, et al., 2013; Pagan et al., 2012), lung (Jewitt et al., 2016), and prostate cancers (Izard et al., 2014; Mahal et al., 2015).

Additionally, the sample size was relatively small and the participants were well educated. The majority of women (50%) had a four-year college education, and 54.3% of participants had an income of more than $50,000 a year. This could be a reflection of the phenomenon that women who are more educated and have greater income are more likely to participate in research studies (Galea, Tracy, Galea, & Tracy, 2007). This could also explain the high levels of health literacy among the sample of women in this study. Our findings suggested that married women had significantly higher levels of chemotherapy knowledge than women who were divorced/separated. However, this study is limited in scope and the results should be interpreted with caution. We can only suspect that women who were divorced/separated may have had different levels of social support which affected their retention of chemotherapy education during stressful, life-changing events of treatment. Additionally, we did not find differences between the type of unpartnered status (widowed verses single) which leaves an unanswered question of whether divorce specifically or any types of unpartnered statuses can negatively impact the uptake and retention of chemotherapy knowledge. Continued investigation with purposeful sampling (women with lower income or less education) to recruit women with more diverse backgrounds and different types of partnered status and social support may reveal further insights into the role of demographic factors in affecting chemotherapy knowledge.

Despite the limitations of instrumentation and sample size, this study is unique. While health literacy and demographic factors have been explored in cancer knowledge, our study is the first to quantify the impact of these factors and heath literacy on chemotherapy knowledge.

Clinical Implications

Based on our findings, nurses should assess for health literacy prior to chemotherapy teaching using word recognition assessments such as the REALM-SF. A brief assessment that can be administered quickly will help nurse educators measure patients’ learning capacities for health-related information and adapt their teaching styles accordingly. Nurses should implement strategies such as the teach-back method to reinforce content during educational sessions to continually evaluate the effectiveness of the chemotherapy education (Caplin & Saunders, 2015; Kountz, 2009).

In addition to health literacy, this study highlights the possible role marital status can play in affecting chemotherapy knowledge. Thus, nurses may want to consider asking patients about their marital status and further explore their social support resources as this may affect how patients obtain and retain information. This assessment would further assist nurse educators in developing strategies that utilize and mobilize social support systems while educating women about breast cancer treatment. For example, nurses could develop educational sessions for family members, partners, and friends about managing side effects and knowing when to call the doctor.

Highlights.

• Education is essential for patients to obtain and retain chemotherapy knowledge.

• Health literacy skills are associated with chemotherapy knowledge.

• Marital status and income play a role in patients absorbing chemotherapy information.