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Complex care systems in developing countries†
Breast cancer patient navigation in Ethiopia
Article first published online: 22 DEC 2009
Copyright © 2009 American Cancer Society
Volume 116, Issue 3, pages 577–585, 1 February 2010
How to Cite
Dye, T. D., Bogale, S., Hobden, C., Tilahun, Y., Hechter, V., Deressa, T., Bizé, M. and Reeler, A. (2010), Complex care systems in developing countries. Cancer, 116: 577–585. doi: 10.1002/cncr.24776
Presented in part at the Sixth European Breast Cancer Conference (EBCC-6), Berlin, Germany, April 15-19, 2008.
- Issue published online: 25 JAN 2010
- Article first published online: 22 DEC 2009
- Manuscript Accepted: 20 MAY 2009
- Manuscript Revised: 1 MAY 2009
- Manuscript Received: 3 FEB 2009
- breast cancer;
- care nodes;
- Ethiopia Breast Cancer Project;
- patient navigation;
- developing countries;
- chronic disease
As the global visibility and importance of breast cancer increases, especially in developing countries, ensuring that countries strengthen and develop health systems that support prevention, diagnosis, and treatment of a complex chronic disease is a priority. Understanding how breast cancer patients navigate health systems to reach appropriate levels of care is critical in assessing and improving the health system response in countries to an increasing breast cancer burden in their populations. Ethiopia has accelerated attention to breast cancer, expanding clinical and public health efforts at diagnosing and treating breast cancer earlier and more efficiently.
This project used a mixed-method approach to assessing patient navigation of the healthcare system that resulted in care at the cancer referral hospital for Ethiopia (Tikur Anbessa Hospital [TAH]). In total, 69 patients representative of the entire breast cancer clinical population at TAH were interviewed.
Navigation chains are widely divergent and typically involve 3 or more care nodes until they reach the referral hospital. Patients who consult traditional healers have significantly more care nodes to reach the referral hospital than others, and patients who have direct access to local and regional hospitals have the smallest number of care nodes. Patients report moving laterally from 1 health institution to another or regressing to lower levels of care, sometimes complicated by reinvolving traditional healers.
The care system can be streamlined for breast cancer patients in Ethiopia to facilitate patient access to available and clinically effective diagnostic and treatment services in the country, largely through improving local primary care and hospital capacity to provide basic breast cancer services and improve detection and referral. Cancer 2010. © 2009 American Cancer Society.
With increasing prominence and greater visibility in country-specific health profiles around the world,1 breast cancer and its prevention, detection, and treatment is and will continue to emerge as a major priority, and challenge, for health systems in the near future.2 Breast cancer, as an increasingly common3 but treatable disease,4 requires patients to traverse a variety of services, typically offered in various physical locations through the health system.5 Some specialized treatments (such as hormone-specific treatment) and specialized human resource capacities (such as oncologists or radiologists) may exist only in a single cancer referral center, if at all, in many countries and regions of the world.6 Accessing these resources is often the result of a process that involves numerous other health encounters and institutions,7 frequently across substantial distance and with considerable expense.8
The Breast Health Global Initiative recommends that minimal country capacity at a basic level should include the ability to detect and treat breast cancer, with increasingly more sophisticated services enabled incrementally as health systems strengthen.9 Throughout a health system, as some diagnostic and treatment resources are distributed (often unevenly), the typical patient suspected of having breast cancer usually needs to visit numerous facilities in different geographic areas for different services.10 Furthermore, patients for whom a breast cancer diagnosis is missed altogether but whose symptoms progress and worsen often may visit a range of facilities and practitioners in their search for help, and they often are misdiagnosed numerous times along the way.11, 12
How breast cancer patients navigate this typically unclear, varied, and often poorly distributed set of diagnostic and treatment services is of primary importance to health systems and program planners.13 Particularly in a context of inequity and differential access to health services, a better understanding of how patients navigate the health system to benefit from effective treatment guidelines, expanding capacity, and emerging available treatments for breast cancer is critical in developing countries.14 Early diagnosis and treatment increases survival from breast cancer,15 and critical time can be wasted through inefficient service navigation, which can delay the receipt of appropriate care for months or even years.16-18
In Ethiopia, where breast cancer is especially fatal given late presentation,19 limited resources,20 low awareness of breast cancer and its symptoms,21 and strong traditional beliefs that can delay biomedical care22 but where new and effective treatments are increasingly available and accessible to the population,23 understanding and smoothing breast cancer care navigation for patients throughout the healthcare system could significantly improve timely detection and treatment. Global guidelines promote the provision of basic services relating to breast healthcare at the local and regional levels, with increasingly complex services provided in centralized cancer centers.13 The expectation is that, especially for more advanced instances of breast cancer, patients will access more sophisticated treatments and therapies, including endocrine therapy, advanced imaging services, complex surgical procedures, and specialized clinical pathology, at tertiary, centralized cancer centers. In Ethiopia, the primary care system is not fully or equitably functional throughout the country,24, 25 such that essential breast health services are not fully available at the appropriate levels. In fact, the size and distribution of the health workforce in Ethiopia is among the most limited and constricted in the world.26 Realistically, given current resources, it would be reasonable to anticipate that a patient who presented with breast disease would traverse through the healthcare system in perhaps as many as 3 stages (eg, 3 care nodes), perhaps at the community (primary care) level, at the regional hospital level, and at the centralized cancer center, which has the largest set of diagnostic and treatment options.
MATERIALS AND METHODS
This project adopted a mixed-method, qualitative, and quantitative approach to better understanding the experience of breast cancer patients who receive care at the only cancer referral hospital in Ethiopia, Tikur Anbessa Hospital (TAH). Patients or their family proxies were interviewed using semistructured interview protocols that were developed after open-ended ethnographic interviews and observations to learn more about the participant's navigation through the health system that culminated in their treatment at TAH.
Data teams were managed by a physician and an anthropologist associated with the project and with the Ethiopian Cancer Association. The data teams consisted of 4 senior medical students who were fluent in written and spoken Amharic and English and who located and interviewed the respondents. Medical student team members were selected based on their interest in participating in a research project, their interest in working further in breast cancer, and their availability to conduct interviews during the 2008 project period. The data teams participated in a 1-day training session that included study overview, ethical conduct of research, role play, pilot test interviews, and review. The teams were debriefed each day with investigators for major points and discussion items for the group. Qualitative data were analyzed through theme analysis predominantly using ATLAS.ti software (version 5.5; Scientific Software Development GmbH, Berlin, Germany), and quantitative data were analyzed using JMP (Version 8; SAS Inc, Cary, NC).
Interviews were conducted in Amharic and were not tape recorded; rather, data collectors kept field notes (in English) regarding participant responses. Rarely and only when necessary, translated English grammar in direct quotes captured in field notes is corrected to ease readability, although the content remains unchanged. Also, where appropriate, notes are placed in the person-orientation of the participant (usually the first-person) context when presented. In this analysis, capturing participant stories, not necessarily orality, was the primary objective of the transcription.27
Ethiopia Breast Cancer Project
The Ethiopia Breast Cancer Project (EBCP) is funded by a grant from AstraZeneca to the Axios Foundation to improve breast cancer care through developing a center of excellence at TAH, which is a large referral hospital in Addis Ababa. The objectives of the EBCP are is to strengthen human resource capacity, technical competency, and advocacy and to improve access to treatment for breast cancer in Ethiopia, working closely with all related departments and services of TAH, the Ministry of Health, and the Ethiopian Cancer Association (see Upton 200728). The infrastructure and capacity supports that comprise the EBCP are fully integrated with existing care mechanisms at TAH, such that all patients who require breast cancer care receive services (screening, diagnosis, pathology, radiology, chemotherapy, etc) supported by the EBCP.
For this project, we adopted the notion of “patient navigation” as how patients traverse, or travel through, the various components of healthcare required for diagnosis and treatment of their breast cancer. We adopted the concept from Wells et al that the objective of patient navigation is to reduce delays in accessing the continuum of cancer care services, with emphasis on the timeliness of diagnosis and treatment and with a reduction in the number of patients who are lost to follow-up.29 Borrowing constructs and terms from the geographic concept of navigation,30 we define a “node” as a site or institution where a patient obtains a service, and we defined the “navigation chain” as the collection of nodes that comprise an individual's care experience. Furthermore, in Ethiopia, the primary nodes involved in the cancer care process, defined as facilities that are usually government-run, also include nonhospital primary care sites (for example, a local clinic or other primary care facility); local, regional, and military hospitals of various sizes and capacities that serve defined geographic areas; and the large tertiary center in Addis Ababa, TAH. There also are some private hospitals and clinics that are not government-run, although these were accessed far less frequently in the current study. By using global guidelines for the availability of various services for breast cancer screening and diagnosis,13 a patient could expect to traverse the entire range of institutions, culminating in care at TAH, which is the sole source of certain types of cancer care.
Patients who presented at TAH for breast cancer care were selected randomly over the span of 1 month and were asked to provide consent to participate in this study. In total, 55 patients participated in the study, and there were 14 proxies (adult children, spouses, others) representing other patients, for a total of 69 patients represented. The average interview lasted 41 minutes. Compared with the clinic treatment population for the first half of 2008 from EBCP programmatic data, the study sample did not differ significantly from the clinic treatment population on any of the following parameters: mean patient age (44.5 years in the study sample vs 43.1 years in the breast cancer clinical population), sex (98.1% women vs 98.7% women, respectively), and residence (67% reside in Addis Ababa vs 63.4%, respectively).
This project was reviewed and approved by the Addis Ababa University Faculty of Medicine Institutional Review Board. In addition, project team members were trained in research ethics using materials from the CitiProgram (available at: www.citiprogram.org accessed January 2008). Participant names were not collected as part of this project, and indirect identifying information was grouped and presented in general categories or in aggregate.
Table 1 shows that the most common node of entry into the healthcare system for patients with breast cancer in this study was a nonhospital primary care site (53.7%), typically a local clinic or an individual practitioner. The second most commonly accessed initial nodes of care were traditional healers and also local or regional hospitals (16.4% each). An additional 9% of patients with breast cancer accessed care first through a private hospital setting, and 4.5% accessed care directly at TAH, the tertiary referral center for cancer. The node of entry to care did not vary significantly by geography, religion, or age.
|Timing Into Care||No.a Accessing Care at That Level (Total %)||Care Node: No. of Patients (Total %)||Total No. Completing Navigation at Level, No. (Column %)|
|Traditional Healers||Primary Care Site||Local/ Regional Hospital||Private Hospital||Cancer Hospital (TAH)|
|First entry node of care||67 (100)||11 (16.4)||36 (53.7)||11 (16.4)||6 (9)||3 (4.5)||0 (0)|
|Second node of care||67 (100)||3 (4.5)||13 (19.4)||15 (22.4)||17 (25.4)||19 (28.4)||19 (28.4)|
|Third node of care||48 (71.6)||0 (0)||3 (4.5)||13 (19.4)||2 (3)||30 (44.8)||30 (44.8)|
|Fourth node of care||18 (26.9)||0 (0)||0 (0)||2 (3)||1 (1.5)||15 (22.4)||14 (20.9)|
|Fifth node of care||4 (6)||1 (1.5)||0 (0)||1 (1.5)||1 (1.5)||1 (1.5)||1 (1.5)|
|Sixth node of care||3 (4.5)||0 (0)||0 (0)||1 (1.5)||0 (0)||2 (3)||1 (1.5)|
|Seventh node of care||2 (3)||1 (1.5)||0 (0)||0 (0)||0 (0)||1 (1.5)||2 (3.0)|
|Mean± SEM no. of care nodes, based on entry site||3.8±0.26||3.3±0.18||2.3±0.19||2.8±0.48||2.7±0.67||—|
Recounting how they initially entered the care process, patients offered a wide range of factors and dynamics driven by their knowledge of the disease and its treatment options, by family pressure and preferences, and, notably, by the ability of their initial care site to accurately diagnose and refer that patient on for further assessment or care. Note that navigation chains are presented for respondents using the following abbreviations: PC indicates primary care site (eg, local clinic); LRH, local/regional hospital (eg, regional or local hospital); TRAD, traditional healer; TAH, Tikur Anbessa (Cancer Hospital).
Around 4 years back, I started noticing a small lump over the right breast, but I was not that much concerned. Then, after some time, by my family's effort I went to a private clinic, and there [fine-needle aspiration cytology] FNAC was done, and I was told that I have breast cancer (Participant 50; PC-TAH).
Two years back, I noticed a small nodule over my left breast, but I was not that much concerned about it. Then, when I got pregnant in that year, the mass started becoming very painful, which forced me to seek medical attention. Then I was told that it could be cancer and that I would get the treatment after giving birth. Then, after delivery of my baby, I went back to the clinic where a needle specimen was taken, and I was told that I have breast cancer (Participant 65; PC-TAH).
Before 2 years, I started feeling a sharp tingling type pain over my left breast associated with a little swelling. But I didn't do anything about it or tell anybody, because I was under the consideration that it will go away by itself. But, after about 4 months, I had to go to a nearby health center, because the mass was getting bigger, and the pain was getting worse. Then, I was referred to (local) hospital where FNAC was done, and I was told that I have breast cancer (Participant 49; PC-LRH-TAH).
I came with my sister-in-law. She had a lump starting a year back, at first it was painless. Around 6 months later, the lump became harder and painful. Then, she went to Tikur Anbessa Hospital directly (the sister-in-law of Participant 56, who directly went to TAH).
Often also complicating care decisions in Ethiopia are substantial beliefs that traditional therapies can offer relief or cures, as evidenced in the following accounts of initial access to care.
Around 3 years ago, I started to experience an itching sensation over my right breast, which later on worsened and became associated with a lump located around the nipple and with pricking type of pain. Then, I went to a local healer, where I took some medications for 30 days. After the herbal medications, my breast burst massively and prompted me to go to (a regional hospital). About 2 years back, I was told I had breast cancer, and an operation was done in (the same regional hospital). Then, I was referred to TAH… (Participant 44; TRAD-LRH-LRH-TAH).
My mother had noticed a mass on her breast some 3 years ago but did not do anything about it, as there was no one to take her to hospital. All of her children, including me, were away for work. Then, recently, the affected breast started to be painful more around the nipple; then, it formed a wound. It was infected, and pus was being discharged. For all of these, she did nothing but go to holy water and has applied some blessed soil. I came as I heard the bad news, I was really shocked, because I had heard that its very dangerous and it's the top killer where I live. I immediately took her to a private clinic and was told it was a cancerous condition. So, immediate surgery was recommended, and so surgery was done in (private hospital) and chemotherapy was started in TAH (daughter of Participant 31; TRAD-PC-LRH-TAH).
From that initial node of entry, breast cancer patients took a variety of routes to the final care node of the Cancer Unit at TAH, which offers the most comprehensive (and, in some cases, the only) access to new therapies, treatments, and diagnostic technologies. In total, 28.4% of patients reached the endpoint (ie, TAH) at the second node of care through direct referral to TAH from their primary entry node, an additional 44.8% reached the care endpoint through referral to TAH at the third node of care, and an additional 26.9% reached TAH at the fourth node of care, or later.
Patient-related factors (eg, disbelief, lack of awareness, distance, and expense) and institutional capacity and ability to accurately diagnose breast cancer complicate and, in some cases, expand the total number of nodes-of-care patients experience before they arrive at the cancer center.
A year back, I noticed a small lump on my right breast around the nipple while self-examining. And there was an associated mild pricking type of pain. While I was hesitating to go to hospital and also while my friends and family were advising me to go to local healers, the lump progressively enlarged. The massive enlargement of the lump prompted me to go to hospital. First, I went to (local) hospital, FNA biopsy was done, and I was told I had cancer of the breast. Because I didn't believe the result, I went to another clinic. In this clinic, investigations were done again and confirmed cancer of the breast. Then, the operation was done around 10 months ago in another hospital and I was sent back to the clinic for chemotherapy. I completed my chemotherapy at that clinic and was referred to TAH for radiotherapy… (Participant 39; LRH1-LRH2-LRH3-TAH).
I first noticed a very small hard swelling on my breast that, after 1 month, was associated with a sharp pain. For it, I was seen at a clinic where I work. They referred me to a health center for better treatment and from there to (a regional hospital), where surgery was done. For chemotherapy, I came to TAH and completed my 6 cycles (Participant 61; PC1-LRH-PC2-LRH-TAH).
Five years back, I started experiencing an itching sensation over my left breast. But later on, a lump associated with a burning type of pain appeared. Then, I went to the health center, and they referred me to (local) hospital. Again from (local) hospital, I was referred to TAH. Because I was not able to get a bed in TAH, I stopped going to hospital. Afterward, multiple lumps started to appear on the same breast. At this time, I went to a private hospital—this process took me a year. Four years back at that (private) hospital, I was told I had breast cancer, and an operation was performed. After the operation, they referred me to TAH, and I went through 8 cycles of chemotherapy (Participant 52; PC-LRH1-TAH-LRH2-TAH).
On average, patients whose first node of care was a traditional healer had the highest mean number (±standard error of the mean) of care nodes to reach TAH (3.8, ± 0.26 care nodes), followed by primary care (3.3, ± 1.8 care nodes), private hospitals (2.8; ± 0.48 care nodes), and local/regional hospitals (2.3; ± 0.19 care nodes). In total, patients whose first node of care was a local or regional hospital ultimately reached care at TAH with significantly fewer additional care sites compared with other first nodes of care.
Navigation chains are complex and varied and clearly do not represent a straight line from entry node to TAH. Table 2 indicates that the most commonly identified navigation chain—shared by 26.9% of the sample—was a 3-node chain from a primary care site (eg, local clinic or health center), to a local or regional hospital, and finally to TAH. The second most commonly noted navigation chain was directly from a local or regional hospital to TAH, and the third most commonly identified navigation chain was the same as the first (ie, primary care-local hospital-TAH), although it was prefaced with an initial entry node of care with a traditional healer.
|Navigation Chain||No.||% of Total|
Examples of common chains include the following:
(PC-LRH-TAH) I went to a nearby health center. They referred me to (regional) hospital. The physician examined me and told me the breast should be removed, because it was a cancer. I don't have any choice. I undergo mastectomy finally, and the sample is sent to Tikur Anbessa Hospital. I was also referred to Tikur Anbessa Hospital. From the sample taken from my breast, it was confirmed to be breast cancer (Participant 45).
(PC-LRH-TAH) I was diagnosed to have breast cancer a year back. It first started as a lump, but much thought was not given as I was perfectly healthy. Then, some time later, it started to have sharp pain and sometimes it keeps me from using my hand. That made me seek for help, as I went to a private clinic and was told to I had a potentially cancerous condition. So, I went to the missionary hospital, and diagnosis was confirmed, and surgery was immediately done. But, due to the absence of the physician that was following me in the first appointment, I was referred to come to Addis and follow my case, so I came to TAH (Participant 63, from Central Ethiopia).
(TRAD-LRH-TAH) My sister is the one suffering from breast cancer. She lives in (Northern Ethiopia). The disease started with a little lump over the breast, and she noticed it but never considered it could be something dangerous, and she neglected it…Then, for that, she was steam-bathed with herbal leaves. She never got better, so she was advised by a family member to go to (the local) hospital, and simple excision was to be done, but she was discouraged to do that. Rather, she was advised to come to TAH, where complete treatment is available… (sister of Participant 30).
Navigation chains for patients, however, vary significantly and are not homogenous. Slightly less than half of all patients in the study, for instance, followed 1 of these 3 navigation chains; the rest followed less predictable, more individualized pathways, reflecting the often confusing and inefficient process of diagnosing cancer. In addition, 13.4% of patients experienced a “reverse” navigation chain; that is, they reverted to a lower level of care unnecessarily at some point (for example, going from a regional hospital back to a primary care physician instead of on to TAH). Furthermore, 19.4% of patients repeated a node in the navigation chain; that is, they either sought care at another location at a similar level (for instance, from 1 primary care site to another primary care site before moving up the navigation chain to a higher level of care), or they returned to the same site for additional diagnosis or care before reaching a higher level of care.
The following accounts illustrate patients who reverse-navigated in the care process, essentially leaving an appropriate level of care for an unnecessarily lower level of care, delaying the process of treatment altogether.
Two years back, I noticed a small nodule over my left breast but didn't do anything about it. Then, the mass was getting larger, so I went to a nearby health center; and, after physical examination, they told me that I need surgery, but I refused and went back home. Then, I started using holy water, but the mass was getting bigger and was starting to ulcerate. Then, the wound was getting big, at which time I showed it to my son. He was shocked and took me to the health center, and there, they were cleaning the wound and dressing it for about 2 months, then subsequently referred to Tikur Anbessa (Participant 21; PC-TRAD-PC-TAH).
First, I saw a lump on my left breast it was painless. I notice it while I was washing my body. I went to the reproductive health clinic. They referred me to Tikur Anbessa Hospital. After fine-needle aspiration was done, it was found to be breast cancer. I couldn't believe that, and I immediately went home and disappeared from the hospital. After 6 months, a friend of mine came from abroad. I told him that I was told I had breast cancer; he was shocked and told me that it is main killer in western countries and it might kill if I am not treated. Then, I went to a private clinic. The physician there told me the lump can be excised and sent to the laboratory for detailed examination—so I went through the surgery. After the excised lump was sent to the laboratory, it was found to be breast cancer. Again, the physician told me to do a total mastectomy, though the decision was difficult. I final agreed with my physician to do mastectomy. Actually, it is the most difficult time for me on the treatment of breast cancer. Then, I was referred to Tikur Anbessa Hospital to start the chemotherapy (Participant 15; PC-TAH-PC2-TAH).
Similarly, valuable time can be wasted in the patient navigation process by moving from institution to institution at a similar level of care (ie, navigation with repeated nodes), and this can be complicated even further by lengthy wait times and expenses.
Five years ago, I had 2 surgeries on my breast because there were 2 lumps. The lumps were removed and sent for laboratory. They were noninvasive, and my physician told me not to worry. After 3 years, I got severe back pain, blurring of vision, and swelling in my neck. I went to a nearby clinic, and, with some physical examination, my physician found a lump in my breast. He referred me to another clinic. I underwent some investigation there, and it was found to be breast cancer…I started the chemotherapy at clinic and after completing this therapy I was referred to Tikur Anbessa Hospital to start medication (Participant 14; PC-PC2-TAH).
Three years back, I started feeling a sharp tingling kind of pain in my right breast. I went to a nearby clinic and was diagnosed with a cold, and I started oral medication. Then, after some time, I developed a pea-sized, hard nodule over the same breast, which was getting bigger as time passed. Then, I went to the same clinic; and, after breast examination, they told me to go to (regional) hospital. Then at (that) hospital, after a lot of time waiting for a bed, I finally was admitted, and they took a needle specimen, and I was told that I have breast cancer and that I needed surgery. Since I didn't have any other choice, I had to have the mastectomy done. Then, I started chemotherapy after being referred to Tikur Anbessa (Participant 23; PC-PC-LRH-TAH).
Two years back I had a mild, pricking type of pain over my left breast for which I went to private clinic and was told that it was associated with the breast milk. But, after a month the pain worsened, and the nipple started to produce a bad secretion when squeezed. Then, I went back to the clinic at which time they referred me to (a regional hospital). At that hospital, an operation was done, and they referred me to TAH for chemotherapy (Participant 16; PC-PC-LRH-TAH).
I saw a lump on my left breast. It was painless at that time, and I thought it will resolve by its own. Finally, the lump became harder and ulcerated—it became very painful within 2 years. I went to the health center, and the physician examined me and told me that it is breast cancer and I will not live more than 2 months. Then, she referred me to (regional hospital). From there, I was referred to TAH for laboratory. A sample was taken from the lump, and the result was breast cancer. I went with the result back to (the regional hospital). I waited for 6 months to get a bed and do mastectomy. It was the most difficulty for me I had in my life. The ulcer was constantly leaking blood and pus. I always come to the hospital, but no one is willing to help me. I cried. Finally, I did mastectomy there, and they referred me here (TAH) for chemotherapy (Participant 41; PC-LRH-TAH-LRH-TAH).
One year back, my sister noticed a small lump over her left breast. Then, we went to a nearby clinic, and needle aspiration was done, and she was told that she had cancer, but then a biopsy was taken and she was told that she didn't have cancer. But because we wanted to be certain, we went to another clinic, and FNA was done, and we were told that she did have cancer. Then, we were told that she needs surgery. But until the time of surgery, she was using holy water and blessed soil with hope that the lump will melt away. Then, she had the mastectomy, then she was taking chemotherapy. And once she finished chemotherapy at a private center, we were told to go to Tikur Anbessa for further treatments. When she was told that she have breast cancer clearly, nobody was happy. Since the chemotherapy was expensive and also sometimes not available, we had to buy it from Egypt, which made getting care difficult (Sister of Participant 35; PC-PC2-TRAD-LRH-TAH).
Individuals who experience symptoms of what ultimately is diagnosed as breast cancer often enter into a complex and nonlinear system of decisions and care, as perhaps would be expected in countries with severe health and health systems challenges such as Ethiopia. Access to basic services around breast cancer diagnosis and treatment are distributed incompletely at the appropriate levels of the health system in Ethiopia; sometimes, a local primary care site may have the staff and capacity to detect a potential cancer case and refer the patient on, and sometimes they do not, thereby introducing inefficiency in getting to necessary diagnosis and care. Some services (eg, radiation, adjuvant therapy, complex surgical intervention) are available only at the tertiary cancer center in Addis Ababa, which places a primacy on streamlining patients to that navigation chain endpoint (and perhaps back again to their more local healthcare facilities). Patients who have breast cancer or who are facing the prospect of having breast cancer sometimes are confused, unclear, scared, or otherwise unable to easily make the necessary decisions without well prepared health personnel and informed family to guide them. The analyses from the current study indicate that all of these interrelated factors may combine to make the care process more inefficient than it could be.
This study demonstrates the navigation complexities that face individuals with breast cancer as they pass through the health system in Ethiopia. This study purposefully focused on patients who ultimately received care at the cancer referral hospital to determine better how individuals successfully navigate the system to reach that care node. Indeed, many patients in Ethiopia likely remain undiagnosed or inadequately treated at facilities that are unfamiliar and/or are unprepared to diagnose and provide appropriate care. The individuals in this study ultimately reached care at a specialized cancer hospital where the full complement of breast cancer treatments were available; the pathways for those who did not are unknown, and it also is important to learn more about those pathways.
In many instances in Ethiopia, as elsewhere, many patients in developing countries are unaware of the signs and symptoms of breast cancer and, consequently, often present too late for effective treatment.31 Their delay in reaching effective diagnosis and care often is complicated by unclear and inefficient navigation of the health system.12, 32 Often, as reflected in the current study, in Ethiopia, patients will seek traditional healers and therapies for their symptoms before entering formal healthcare, either because they believe that the traditional system is the most effective choice for those symptoms and they are unaware that their symptoms may reflect breast cancer, or because they are aware that they may have cancer and may not consider it treatable. Similar findings have been observed elsewhere, indicating that women with breast cancer often first seek the help of a traditional healer, whose primary concern will be to address the presumed spiritual causes of cancer.33 In South Africa, in fact, women perceive that they often have little choice regarding where to seek help for the symptoms of breast cancer and commonly consult traditional healers first.34 Furthermore, studies have demonstrated that consulting a traditional practitioner delays progress toward appropriate medical care for patients with breast cancer,35 which we also observed in the current study. Additionally, it has been reported that considerable portions of breast cancer patients in other countries refuse standard oncology treatments altogether,34 as also observed in Ethiopia, with patients often opting to delay further care or seeking traditional therapies, thereby compromising their prognosis.
In addition to patient-specific beliefs and preferences regarding how and where to seek care first, diagnosis and treatment resources for breast cancer in Ethiopia are very limited.36 In the current study, symptomatic breast cancer patients often ricocheted from location to location undiagnosed or, once they were diagnosed, in search of treatment, which was reflected in the proportion of patients who continually sought help at the same level of the care system (19.4% of participants) and those who, mostly by personal choice, accessed different institutions but decided to go back to their local care sites to revisit their symptoms (13.4%). In several instances, families provided important guidance in this navigation through the system. Greater than 25% of the participants in this project involved at least 4 care sites in reaching the cancer hospital, and participants who sought traditional therapies first delayed care even longer and had higher average numbers of care nodes.
Studies have indicated that, because of poor distribution and limited access to services, patients in rural and urban areas often have quite different navigation chains.33 In Ethiopia, the paucity and maldistribution of health resources, especially the specialized physicians and nurses required for oncology and affiliated disciplines (eg, pathology), seriously complicate health service availability for everyone,26 especially those located outside of Addis Ababa.37 Furthermore, because the healthcare system in Ethiopia historically and necessarily has developed especially to respond to infectious disease, healthcare personnel will require training and support to effectively communicate and practice appropriately around chronic disease,25 including cancer. The current study demonstrates that, even among breast cancer patients who did ultimately gain access to care, health system navigation very often is indirect, unclear, and resource-intensive. The tertiary cancer facility in Addis Ababa perhaps could facilitate the strengthening of local healthcare systems around cancer by enhancing communications with local healthcare providers and through helping streamline access to their services by aligning more closely with local facilities. Efforts to join local, district, and regional institutions and resources into a more coordinated system to enhance access to breast cancer care that supports awareness, resource-appropriate detection, treatment, and follow-up for breast cancer patients in Ethiopia would maximize the efficiency of the emerging breast cancer focus, clinical capacity, and programs in the country.
CONFLICT OF INTEREST DISCLOSURES
The Ethiopia Breast Cancer Project is funded by a grant from AstraZeneca to the Axios Foundation.
- 1World Health Organization. World Health Statistics 2008. Geneva, Switzerland: World Health Organization Press; 2008.
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