Assessing and Addressing the Need for Cancer Patient Education in a Resource‐Limited Setting in Haiti

Abstract

Purpose

Misinformation and lack of information about cancer and its treatment pose significant challenges to delivering cancer care in resource‐limited settings and may undermine patient engagement in care. We aimed to investigate patients’ knowledge and attitudes toward cancer and its treatment and to adapt, implement, and evaluate a low‐literacy cancer patient education booklet at the Hôpital Universitaire de Mirebalais (HUM) in rural Haiti.

Materials and Methods

A low‐literacy cancer patient education booklet was adapted into Haitian Creole in collaboration with clinicians at HUM. Patients were recruited for structured interviews (n = 20) and two focus groups (n = 13) designed to explore patients’ attitudes toward cancer and its treatment and to assess whether the booklet increased patients’ knowledge via an investigator‐designed knowledge test.

Results

Participants reported a subjective lack of knowledge about cancer and its treatments and described views of cancer as deadly or incurable. Patients of varying education levels valued receiving written materials that set expectations about cancer treatment and expressed a desire to share the booklet with caregivers and others in their community. Participants across all levels of education significantly increased their performance on a knowledge test after counseling using the booklet (p < .001).

Conclusion

We found that an educational booklet about cancer developed in collaboration with local providers was well received by patients with variable literacy levels and improved their knowledge of cancer and its treatment in a resource‐limited setting. Such educational materials have the potential to serve as tools to engage patients with cancer and their families in care.

Implications for Practice

Misinformation and lack of information pose significant challenges to delivering cancer care in resource‐limited settings; however, there are often no culturally and literacy appropriate tools available to aid in patient education. This article shows that written educational materials are well received by patients of variable literacy levels and can be effective tools for increasing patients’ knowledge of cancer and its treatment in a limited‐resource setting. Furthermore, the authors have made their educational booklet, Cancer and You, freely available online and welcome the opportunity to connect with readers of The Oncologist interested in implementing this educational booklet in clinical care.

Short abstract

New efforts are being made to bring modern cancer medicine to patients in low‐ and middle‐income countries. This article describes an educational tool that could enhance patient–provider communication and promote adherence to treatment by helping patients understand cancer and its treatment.

Introduction

Cancer incidence is rising worldwide with a disproportionate increase in the burden of disease and disease‐related mortality in low‐ and middle‐income countries (LMICs) [1]. New efforts are being made to bring modern cancer medicine to patients for whom treatment was previously out of reach [2]. Global Oncology is a nonprofit organization whose mission is to foster the delivery of quality cancer care to underserved patients around the world. Global Oncology began collaborating with cancer clinicians in Malawi in 2012. During regular tumor board videoconferences, providers often noted that adherence to chemotherapy was challenging. They hypothesized that patients’ lack of knowledge about cancer and misunderstanding of chemotherapy's side effects might undermine adherence.

At that time, no cancer patient education materials available were culturally appropriate and understandable for low‐literacy patients in sub‐Saharan Africa. Global Oncology partnered with a design consultancy (The MEME Design), care providers at Queen Elizabeth Central Hospital in Malawi and Butaro District Hospital in Rwanda, and patient education experts at the Dana‐Farber Cancer Institute to create new materials designed specifically for patients in LMICs. Our goal was to create an educational tool that could enhance patient‐provider conversations and promote adherence to treatment by helping patients understand cancer and its treatment. The tool we created is an eight‐page booklet with culturally relevant images titled Cancer and You, which is available for free online [3, 4]. This project was the first attempt, to our knowledge, to create such materials collaboratively with providers caring for low‐literacy patients with cancer in resource‐limited settings.

The booklet (available in the online supplement) uses line drawings and accompanying text to present questions and answers about cancer and chemotherapy, including what cancer is and what types of treatment exist. Topics include common side effects of chemotherapy, when to seek care at the hospital following chemotherapy, advice on how to care for yourself and others receiving treatment for cancer, and reassurance that cancer is not contagious and that it is safe to be around others. The booklet also contains a side effect recorder for patients to track side effects during chemotherapy.

Cancer and You was developed collaboratively with providers and implemented in Rwanda and Malawi; however, no formal evaluation of the materials’ acceptability and efficacy among patients was performed. Questions remained around how best to integrate the booklet into clinical practice. Here we describe the partnership between Global Oncology and cancer care providers at the Hôpital Universitaire de Mirebalais (HUM) to adapt, evaluate, and implement the materials in Haiti.

Haiti is the poorest country in the Western hemisphere, with over 58% of the country's 11 million inhabitants living below the national poverty line [5]. Epidemiological data on cancer in Haiti are limited by the lack of a national cancer registry; however, Haiti is estimated to have the worst cancer survival in all Latin America and the Caribbean [6]. GLOBOCAN estimated that approximately 12,000 new cases of cancer and 9,000 cancer deaths would be expected in Haiti in 2018. The most prevalent cancers are estimated to be prostate (52%), breast (38%), stomach (10%), cervix (27%), and colon (11%) [7].

Haiti has few oncologists, and the nation's largest nongovernmental health care organization, Partners in Health, only began to formally provide cancer therapy in 2010. Partners in Health's cancer program is based at HUM, a teaching hospital and referral center serving an area with 3.4 million inhabitants [8]. Since HUM opened in 2013, the cancer program has treated over 3,000 patients. Most patients seen in the oncology clinic have breast cancer (86%), chronic myeloid leukemia (4%), gastrointestinal (3%), or gynecologic (2%) cancers (L.N. Shulman, personal communication). Similarly, a cancer program in Haiti's capital, Port‐au‐Prince, reported breast cancer as the most commonly treated cancer (46%), followed by gynecologic (22%), gastrointestinal (9%), and hematologic (5%) cancers [9]. The discrepancy between population prevalence and prevalence of cancers among treated patients reflects the limited treatment modalities available.

Our goals in bringing Cancer and You to Haiti were to assess the booklet as a tool for increasing patients’ factual knowledge about cancer and to explore patients’ attitudes toward cancer care to assess how the booklet can be used to engage newly diagnosed patients and promote adherence to treatment. In evaluating the booklet, we focused on patients’ reactions and learning as defined by the Kirkpatrick model for evaluating training programs [10].

Materials and Methods

Booklet Development and Adaptation

The steps of the design process to create Cancer and You have previously been described [3]. The booklet was professionally translated into Haitian Creole and presented to the HUM oncology team, including two doctors, three nurses, a psychologist, and a social worker, who provided input on both content and wording.

Providers noted that the booklet did not address prognosis or goals of care. Patients with cancer in Haiti and other LMICs often present with advanced disease and poor prognosis [11]. However, Cancer and You did not originally address the topic due to anticipated challenges of accommodating different cultural norms about death and end‐of‐life care.

At HUM, 44% of chemotherapy patients receive a regimen with palliative intent (L.N. Shulman, personal communication). When obtaining consent for chemotherapy, providers counsel patients on the intent of their treatment as “curative” or “palliative”—kiratif or palyatif in Haitian Creole. Defining these two terms is an important part of educating new patients and explaining the goals of care. To address this gap in the booklet, we consulted palliative care experts in the U.S. and incorporated local provider input to develop new text for the booklet (Table 1).

Table 1.

Booklet text explaining palliative and curative chemotherapy

What are the types of chemotherapy?
Chemotherapy when cure is possible:  Curative chemotherapy is a series of medications used alone or with other treatments to cure cancer. Chemotherapy when cure is not possible:  Palliative chemotherapy slows the course of cancer, relieves your symptoms and pain, and can make you live longer when there is no treatment that can cure your cancer.

Providers recommended other minor edits to ensure information was locally relevant, for example, advice on eating well and caring for chemotherapy‐associated mouth sores. Booklets were printed on‐site in black and white using local resources at minimal cost.

Selection of Participants and Data Collection

Participants were recruited at HUM by convenience sampling between June and July 2015. All patients receiving chemotherapy at HUM were eligible to participate in interviews. Participants were recruited from the earliest patients to register for chemotherapy in the morning. Participants’ level of education was collected as a proxy measure for literacy level. Individual interviews lasted 45 to 60 minutes, including questions about prior awareness of cancer and an 11‐item knowledge test developed by investigators based on booklet content. A study investigator (P.G.D.) read the booklet aloud to participants, who were encouraged to ask questions, which were answered and noted. Three participants elected to read the booklet themselves. Feedback was solicited about the booklet, and the knowledge test was repeated. Sample interview questions are presented in supplemental online Appendix A. All interview participants provided written informed consent prior to participation in the study. The consent form was read aloud by a study investigator (P.G.D.) to all but three patients, who elected to read the form themselves.

Focus groups lasting 60 minutes were designed and conducted after most interviews were complete. Participants were recruited from weekly support groups for female patients with breast cancer, representing a group of patients strongly engaged in cancer care. The goal was to explore patients’ attitudes toward cancer and experiences with treatment in further depth to understand how the booklet could be used as a tool to engage newly diagnosed patients in care. Sample focus group questions are presented in supplemental online Appendix B. All focus group participants provided verbal informed consent prior to participation in the study. No identifying information was collected.

Interviews and focus groups were conducted with only study investigators and patients present, except one interview in which a caregiver was present but remained silent and one focus group in which another caregiver was present and made one comment (not included in the analysis). Interview and focus group materials were translated professionally into Haitian Creole. All interviews and focus groups were conducted at HUM by L.E.S. and P.G.D. in Haitian Creole. Audio recordings were transcribed by P.G.D. and translated by P.G.D. and L.E.S. into English.

Human subjects research approval for all study components was granted by institutional review boards of Harvard Medical School, Boston, MA, and Zanmi Lasante, Mirebalais, Haiti.

Data Analysis and Reporting

We employed content analysis methodology to analyze focus group and interview qualitative data. The transcripts were coded by L.E.S., and themes were derived to generate a common coding tree, which was applied to both the focus groups and interviews. Representative quotes are attributed to participants by gender and diagnosis for focus group participants and by gender, diagnosis, age, and education level for interview participants.

We calculated means and analyzed performance on the 11‐question knowledge test using a paired Student's t test. To analyze individual test items, we used McNemar's exact test for matched pairs. For all statistical analyses we considered a value of p < .05 statistically significant.

Results

We recruited 20 patients presenting for chemotherapy at HUM for interviews and 13 patients participating in breast cancer support groups for two focus groups (Table 2). A majority of study participants were female patients with breast cancer (70% of interview participants; 100% of focus group participants). Other diagnoses included colon/rectal cancer (n = 2), lymphoma (n = 2) and spindle cell carcinoma (n = 1). Two thirds of participants (67%) attained only primary school or had no education (55% of interview participants; 85% of focus group participants). Data on cancer stage and date of diagnosis were not available. All participants had received some treatment at the time of the study. Participants in focus groups tended to have received more chemotherapy (median 8 cycles, range 3–27) than interview participants (median 1 cycle, range 0–11). All but one interview participants’ chemotherapy regimens were classified according to treatment intent as “curative” or “palliative.” Thirty‐two percent (n = 6) of interview participants were receiving palliative chemotherapy. Only a minority of participants (30%) had known someone with cancer prior to their diagnosis; all but one reported that this person had died from the disease.

Table 2.

Participant demographics and treatment details

Demographics and treatment details	Interviews (n = 20)	Focus groups (n = 13)
Demographics
Age, median (range)	49 (18–71)	50 (33–79)
Gender, n (%)
Male	5 (25)	0 (0)
Female	15 (75)	100 (100)
Education, n (%)
None at all	6 (30)	3 (23)
Primary	5 (25)	8 (62)
Secondary	6 (30)	2 (15)
University or technical school	3 (15)	0 (0)
Treatment details
Diagnosis, n (%)
Breast cancer	14 (70)	13 (100)
Colon cancer	2 (10)	0 (0)
Lymphoma	3 (15)	0 (0)
Other	1 (5)	0 (0)
Prior treatment received, n (%)
Surgery	3 (15)	0 (0)
Chemotherapy	14 (70)	4 (31)
Surgery and chemotherapy	3 (15)	9 (69)
Prior chemotherapy cycles, median (range)	1 (0–11)	8 (3–27)
Chemotherapy intent, a n (%)
Curative	13 (65)
Palliative	6 (30)
Not documented	1 (5)

^aNot collected for focus group participants.

Quotes are attributed by gender, age, cancer type, and level of education (only gender and cancer type for focus group participants).

Knowledge of Cancer

When assessing participants’ knowledge of cancer and its treatment, the most consistent theme that emerged was lack of knowledge about cancer. “Basically, I know that cancer is a disease […] I didn't know anything before. I still don't know anything now, just that it's a disease” (female patient with breast cancer, 50, secondary). Several participants reported learning for the first time that cancer could be treated when they sought care at HUM.

Participants described the progression of cancer and the association between earlier detection and opportunity for cure. “Cancer is a disease where if you don't catch it early you can die” (female patient with breast cancer, 61, none at all). “If you get early treatment it could be treated but if you seek treatment at an advanced stage it becomes harder to treat” (female patient with breast cancer, 41, university/technical school).

Participants expressed a variety of ideas about what causes cancer. The most prevalent response was the cause of cancer is unknown. Three interview participants, all of whom had secondary school or higher education, identified that cancer can be hereditary. Other themes included the ingestion of toxic foods, strong emotions, or physical trauma. Only one study participant reported hearing cancer was contagious, and one identified smoking as a risk factor.

Attitudes Toward Cancer and Cancer Treatment

Participants frequently expressed views of cancer as deadly or incurable, either as their own belief or a belief attributed to others. “I've heard people say you won't last. Once you get it, you're as good as dead. You can take medication to have a few more days, but after that, you should know that you won't last once you get cancer” (male patient with spindle cell carcinoma, 52, primary). Many described overcoming negative views held by others in order to seek treatment. “If I'd listened to what people say, I wouldn't have come to the doctor. Because they tell me that cancer can't be treated. Now, I tell them that cancer can be treated… Now I have hope. I learned that one day I'll get better” (female patient with breast cancer, 39, primary).

Participants’ descriptions of cancer reflect the advanced stage at which many patients present in Haiti, including open wounds, bleeding, infection, and in one case maggots. A few participants used metaphors of rotting fruit to articulate their views of cancer: “I view cancer as like a mango that rots. You remove the part that rots, the other side of the mango is already contaminated” (female patient with breast cancer).

Participants described stigma and social isolation resulting from the diagnosis perceived as deadly: “I never tell people near my house about my disease, because they always want to discourage you. When they hear you have cancer, they all think you're going to die. Then they put you in a faraway corner and isolate you, like old times when you had tuberculosis” (female patient with breast cancer).

When describing cancer treatment, participants viewed chemotherapy as toxic and poisonous but necessary. “Well, we say it best in Creole… Cancer is a poison in your body. You need another poison to destroy it. Chemo is a liquid poison is what it is” (female patient with breast cancer).

Participants valued seeking medical care for cancer and negatively characterized the attitudes of those who do not seek treatment or engage in medical care. “Be insistent with people, because there are people who don't want to take chemo because they don't want to lose their hair” (female patient with breast cancer, 33, secondary). “There's a woman who lives near my house… the doctor says she has a mass in her breast. Every time I tell her to come to the doctor, she doesn't want to… People are showing her remedies to do at home. They tell her she should rub oil around it, to wrap her breast with it, and all these things that are not good for it” (female patient with breast cancer).

Attitudes Toward Cancer and You

Reactions to written materials among participants with limited education were mixed. Some felt they could understand the booklet's content when presented by a study investigator. “There were things I couldn't understand because I can't read. But when you demonstrated it, I understood” (female patient with breast cancer, 49, none at all). Some felt incapable of understanding. “There are a bunch of things I didn't understand. When you can't read there are things you can't understand” (female patient with breast cancer, 48, none at all). Others noted that although they could not read it, a literate family member could read the booklet content to them at home. “I think everyone should have the booklet. I didn't think I would get everything, but even though I can't read, my son can have the booklet and give me information at home. When I don't understand, he can show me” (female patient with breast cancer, 49, none at all).

Participants valued the booklet for setting expectations about treatment and its side effects and for providing advice on self‐care. The importance of having knowledge about cancer and its treatment was a recurring theme. “I must study [the booklet]. For me to get better, I have to know” (male patient with lymphoma, 35, none at all).

Although the booklet was intended as a tool to facilitate discussion between patients and providers, a theme that emerged was the value of sharing the booklet to educate family, friends, and caregivers. “I would say that it's a form of encouragement… when we are sad, we have our friends or our family. We can give them the booklet, and they can understand the disease we have too” (female patient with breast cancer).

Participants also viewed the booklet as a tool to educate those with cancer not engaged in care or not yet diagnosed who are reluctant to seek care. “The booklet is good for me, for the people at home, and also for people who live near my house. […] There's a woman who lives near my house [with] a mass in her breast. Every time I tell her to come to the doctor, she doesn't want to […] if I already had the booklet, I would have given it to her, and she might go to the doctor” (female patient with breast cancer).

Participants expressed concerns around several topics not covered in the booklet, including cancer causes and prevention, specific dietary recommendations, and the impact of cancer and its treatment on fertility and pregnancy.

Performance on Knowledge Test

Participants significantly increased their score on the knowledge test after counseling with Cancer and You (49.2% ± 19.5% vs. 87.9% ± 8.9%; p < .001). When stratified by education, the increase in score was statistically significant at all educational levels (Table 3). Patients with primary school education or less had lower mean scores compared with patients who had secondary school education or higher both before (39.6% ± 20.3% vs. 60.9% ± 10.4%; p = .011) and after counseling (82.8% ± 7.5% vs. 94.0% ± 6.4%; p = .002); however, when comparing mean absolute improvement in score there was no statistically significant difference between patients with primary school education or less versus secondary school education or higher (43.0% ± 19.3% vs. 33.1% ± 13.0%; p = .21).

Table 3.

Interview participant performance on knowledge test by level of education

Level of education attained	n	Pre‐test mean (SD), %	Post‐test mean (SD), %	Difference, %	p value
None at all	6	39 (19)	81 (7)	+41	.001
Primary	6	40 (24)	86 (8)	+46	.015
Secondary	5	61 (13)	96 (8)	+35	.003
University/technical school	3	61 (5)	91 (0)	+30	.010
Overall	20	50 (20)	88 (9)	+38	<.001

Responses to individual knowledge test questions are summarized in Table 4. We found a statistically significant improvement from before to after counseling in patients’ understanding that cancer is not a contagious disease, that patients should continue to take medications for other conditions (e.g., HIV, diabetes, tuberculosis) while receiving chemotherapy, and that patients should seek care immediately if they develop fever, shortness of breath, chest pain, or syncope following chemotherapy.

Table 4.

Percentage of participants with correct response before and after counseling

Question	Answer	Correct response, n (%)		p value
		Pre	Post
1. Is cancer contagious? Can people with cancer give it to other people? (n = 20)	No	12 (60)	19 (95)	.016
2. If chemotherapy makes you feel sick, should you stop treatment? (n = 19) a	No	16 (84)	19 (100)	.25
3. Will most of the problems caused by chemotherapy go away after treatment? (n = 20)	Yes	13 (65)	18 (90)	.13
4. While you are receiving chemotherapy, do you have a higher risk of catching other diseases? For example: TB, malaria, colds, or the flu? (n = 20)	Yes	3 (15)	16 (80)	<.001
5. If you have other medical conditions, such as HIV, TB, or diabetes, should you stop taking your medications for those other conditions while you are receiving chemotherapy? (n = 20)	No	10 (50)	20 (100)	.002
6. After a chemotherapy session, should you go to the hospital right away if you have a fever? (n = 20)	Yes	7 (35)	20 (100)	<.001
7. After a chemotherapy session, should you go to the hospital right away if you have chest pain? (n = 20)	Yes	12 (60)	20 (100)	.008
8. After a chemotherapy session, should you go to the hospital right away if you have shortness of breath? (n = 20)	Yes	14 (70)	20 (100)	.031
9. After a chemotherapy session, should you go to the hospital right away if you faint? (n = 20)	Yes	13 (65)	20 (100)	.016
10. Patient can explain the difference between palliative and curative chemotherapy. (n = 20)	Yes	2 (10)	12 (60)	.002
11. Patient knows whether he or she is receiving palliative or curative chemotherapy. (n = 19) b	Yes	7 (37)	10 (53)	.45

^aOne participant was excluded as she had become ill and was instructed not to receive chemotherapy on the day of the interview.

^bOne participant was excluded due to unknown chemotherapy intent.

Abbreviation: TB, tuberculosis.

When asked about the difference between “palliative” and “curative” chemotherapy prior to counseling with the booklet, only 10% of participants could distinguish between these terms. Seven (37%) of 19 participants with documented treatment intent accurately reported whether their chemotherapy regimen was intended to cure or palliate.

After counseling with the booklet, there was a statistically significant increase in the number of participants who could define “palliative” and “curative” chemotherapy, from 10% to 60% (p = .002). Over half (53%) of participants accurately described the intention of their own treatment as “curative” or “palliative” after counseling; however, the increase was not statistically significant (p = .45).

Discussion

We formed a partnership with local clinicians at a hospital in rural Haiti to adapt, implement, and evaluate an existing cancer education booklet designed for low‐literacy patients in LMICs. We found that patients often express or encounter negative views of cancer as deadly or incurable and feel they lack knowledge about cancer even after initiating treatment. Counseling patients with the booklet effectively increased patients’ performance on a knowledge test based on booklet content, with statistically significant increases across all education levels. Patients valued receiving information about cancer in written form and wished to share information with others in their family and community. These results suggest that employing written materials designed for low literacy when counseling patients may be a successful approach to educating and engaging patients in cancer treatment in LMICs.

Although Cancer and You was designed to facilitate patient‐provider conversations, our results suggest that the booklet may also be a tool for patients to engage their families and support networks while undergoing treatment. Current practice at HUM is to counsel newly diagnosed patients using Cancer and You and provide patients with two copies of the booklet—one for the patient and one for their family. The support of family and caregivers is essential in cancer care, particularly for patients with advanced disease; thus it is equally important to recognize the need for caregiver education in LMICs.

Although a number of studies have examined patients’ views on cancer while investigating barriers to seeking treatment [12, 13, 14, 15], few studies in LMICs have explored patients’ attitudes toward having cancer and receiving treatment [16]. In resource‐limited settings like Haiti, most patients will have few or no sources of medical information apart from their providers. Giving patients and their families accurate, reliable information may mitigate negative or fatalistic attitudes toward having cancer and encourage patients and their families to adopt the attitude that treatment has value [16].

A strength of our study was the collaborative process of developing and adapting the materials and carrying out the evaluation study in partnership with local providers. We engaged Haitian providers in the process of customizing the materials to ensure they were suited to local needs and understandable by patients.

At our Haitian collaborators’ request, we developed new content to define the therapeutic intent of chemotherapy using the terms “palliative” and “curative.” Many patients in Haiti and other LMICs present with advanced disease and poor prognosis; at HUM, 44% of patients on chemotherapy are being treated with palliative intent (L.N. Shulman, personal communication). Discussing goals of care for patients with terminal cancer is challenging. Even in the U.S., patients receiving chemotherapy for metastatic cancer frequently have inaccurate expectations for cure [17]. We found that some patients were able to learn and articulate the difference between “palliative” and “curative” treatment when framed in this fashion; however, we did not specifically counsel participants on their prognoses. Further research is needed to assess whether using these terms helps patients in Haiti understand their prognosis and whether discussions incorporating these terms are culturally acceptable in other LMICs.

Participants also asked about topics not covered by the booklet, including cancer treatment and pregnancy, causes of cancer, cancer prevention, and nutritional advice. Developing a booklet that succinctly covers all aspects of cancer and its treatment is a challenge. Discussing pregnancy during cancer treatment is important yet relevant to only a subset of patients. Nutritional advice was of high interest to patients and addressed briefly under the section “Eating Well.” Causes of cancer and cancer prevention may be addressed in future versions of the booklet. Although they are not a comprehensive reference, the materials are designed as a tool for providers to teach and engage patients, opening a dialogue so that patients can ask questions that concern them most even if the content is not exhaustive.

There are several limitations of our study. All participants were already receiving cancer care; thus their views may not reflect attitudes that deter patients from seeking care. Recall bias may influence self‐reported knowledge of cancer prior to diagnosis. The test prompts before counseling were repeated on the test after counseling, so patients would likely be sensitized and therefore more likely to retain information relating to these questions. Our study population included predominantly female patients with breast cancer, consistent with the population of patients treated at HUM but not the population prevalence of cancers in Haiti (L.N. Shulman, personal communication) [7].

This study assessed the effectiveness of the booklet as a tool for providers to counsel patients. It is unclear whether participants’ performance on the knowledge assessment would improve similarly without counseling. Views expressed by patients with no schooling suggest that illiterate patients would be reluctant to use a written booklet on their own but are open to receiving written information as part of counseling by a provider or with assistance from a literate family member. This reinforces the value of the booklet as a tool to facilitate rather than replace provider‐patient conversations and to engage patients as well as their families in their care.

Conclusion

Successfully expanding cancer care to underserved areas worldwide will require effective tools to engage and educate patients who lack accurate knowledge about cancer and may be unaware that treatment for cancer even exists. We show that counseling patients with cancer using a simple, inexpensive booklet designed with local providers for patients with low literacy in a resource‐limited setting was well received by patients and effectively increased knowledge of cancer and its treatment across education levels. Written materials like Cancer and You can be used to facilitate conversations and disseminate accurate information about cancer to patients, their families, and others in the community. The process described here has served as a framework to create additional adaptations of the booklet as we seek to disseminate patient education materials to cancer programs in resource‐limited settings worldwide. The booklet is now available in five languages (English, Haitian Creole, Setswana, Kinyarwanda, and Spanish) online for download (www.globalonc.org). Further research is needed to elucidate whether implementing such materials can alter patients’ behavior and outcomes by increasing adherence to treatment and reducing dropout in LMICs.

Author Contributions

Conception/design: Lauren E. Schleimer, Peter‐Gens Desameau, Ruth Damuse, Maia Olsen, Veronica Manzo, Carlos Cardenas, Hedieh Mehrtash, Eric L. Krakauer, Leo Masamba, Ami S. Bhatt, Lawrence N. Shulman, Franklin W. Huang

Provision of study material or patients: Peter‐Gens Desameau, Ruth Damuse, Maia Olsen, Veronica Manzo, Carlos Cardenas, Hedieh Mehrtash, Ami S. Bhatt, Lawrence N. Shulman, Franklin W. Huang

Collection and/or assembly of data: Lauren E. Schleimer, Peter‐Gens Desameau

Data analysis and interpretation: Lauren E. Schleimer, Peter‐Gens Desameau, Ruth Damuse, Maia Olsen, Veronica Manzo, Carlos Cardenas, Hedieh Mehrtash, Eric L. Krakauer, Leo Masamba, Ami S. Bhatt, Lawrence N. Shulman, Franklin W. Huang

Manuscript writing: Lauren E. Schleimer, Peter‐Gens Desameau, Ruth Damuse, Maia Olsen, Veronica Manzo, Carlos Cardenas, Hedieh Mehrtash, Eric L. Krakauer, Leo Masamba, Ami S. Bhatt, Lawrence N. Shulman, Franklin W. Huang

Final approval of manuscript: Lauren E. Schleimer, Peter‐Gens Desameau, Ruth Damuse, Maia Olsen, Veronica Manzo, Carlos Cardenas, Hedieh Mehrtash, Eric L. Krakauer, Leo Masamba, Ami S. Bhatt, Lawrence N. Shulman, Franklin W. Huang

Disclosures

The authors indicated no financial relationships.

Supporting information

See http://www.TheOncologist.com for supplemental material available online.

Appendix S1: Supporting information