Introduction

Cancer is becoming a major public health problem in most economically developing countries, including Ethiopia [1]. In Ethiopia, breast cancer is the most commonly diagnosed cancer and the leading cause of cancer death in women [2], accounting for about 32% of the total cases [3] and 19.4% of all cancer deaths [4]. Further, over two-thirds of breast cancers in Ethiopia are diagnosed at late stages of the disease [5]. In addition to the late stage at diagnosis, access to evidence-based treatment is limited in Ethiopia, resulting in poor survival [5, 6].

A previous systematic review conducted by Espina and his colleagues has summarized the reasons for delayed diagnosis of breast cancer patients in Africa. The main reasons noted by this study were low educational attainment, lack of awareness on breast cancer and its detection methods, type of initial symptoms, fear of the disease or its treatment, traditional medicine use, financial difficulties, lack of access to healthcare, number and type of health care providers contacted before diagnosis, delayed referrals or non-referrals, misdiagnosis, wrong advice or false reassurances, and delays in obtaining diagnostic confirmation [7]. This review was mainly based on quantitative studies, and it may not have captured information that could be elucidated from qualitative studies through probing of participants [8]. In addition, the studies included were all based on data obtained before 2014. Since then, various changes have occurred within Ethiopia and Africa such as more political attention to cancer care [9], but late stage disease presentation is still a major problem [10]. The Ethiopian National Cancer Control Plan was drafted in 2015 for the period of 2016–2020 aimed at improving early diagnosis of cervical and breast cancer. For cervical cancer, the government has purchased hundreds of cryotherapies to implement visual inspection with acetic acid in major hospitals in the country. For breast cancer, the government plans to promote early detection of symptomatic breast cancer patients and screening asymptomatic high risk women through promoting breast self-awareness, and clinical breast examination for all women coming to health institutions for other conditions [11]. In addition, the government is constructing five regional cancer treatment centers, subsidizing the procurement of lifesaving chemotherapy for all public facilities, training more health professionals (oncology specialists, nurses and pharmacists), and collaborating with different partners to build the capacity of the health care providers.

Understanding the recent specific barriers to early diagnosis that Ethiopian breast cancer patients are facing is important for planning targeted interventions that help to mitigate premature death of women from breast cancer [12]. Initial exploration using qualitative research methods were considered most appropriate because these methods allow for an in-depth understanding of opinions, thoughts and feelings of respondents, and obtaining more contextualized information on the barriers encountered by the respondents [13]. However, there are few qualitative studies which used first-hand patient narratives to explore the specific barriers to early detection of breast cancer among breast cancer patients in Ethiopia. Dye and his colleagues, using mixed methods, have investigated the experiences of initial symptoms and actions [14], patient navigation [15] and beliefs and practices [16] of breast cancer in Ethiopia. These studies have documented that a substantial proportion of women with breast cancer first seek care in the form of traditional medicine, waited for about one and half year before medical consultation, and face difficulties in navigating the healthcare system for timely diagnosis of their cancer. However, these results were based on data collected approximately 10 years ago and were limited to the beliefs and practices of patients. Hence, the evidence from these studies may not reflect the current causes of late diagnosis of breast cancer in the country in view of the rising burden of the disease and changing healthcare system.

In this study, we investigated both patient and health system-related reasons for late diagnosis of breast cancer from the patients’, family members’, and health care providers’ perspectives in Addis Ababa. The information obtained from this study will help identify gaps and barriers to early diagnosis. It also provides fact-based material to develop “stories” that illustrate the compelling need of improved care.

Methods

The study was conducted at Tikur Anbessa Specialized Hospital (TASH) Oncology Center. TASH is a teaching hospital of the College of Health Sciences of Addis Ababa University, and tertiary referral hospital for the country. The hospital has a separate building for cancer treatment (oncology clinic). This hospital was chosen because it is the referral hospital for cancer care and hosts the only radiotherapy machine in the country.

Results

A total of 23 in-depth interviews were conducted with breast cancer patients, family members, and health care providers of Tikur Anbessa Specialized Hospital Oncology clinic (Table 1).

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Table 1. Study participants’ characteristics and code, TASH, Oncology Clinic, Addis Ababa, Ethiopia, 2017.

https://doi.org/10.1371/journal.pone.0220769.t001

Based on thematic analysis, the responses of the participants revealed eight common reasons for late diagnosis, and three factors contributing to early diagnosis.

Discussion

This study explored both patient-related and healthcare system-related reasons for late diagnosis of breast cancer from patients’, family members’, and health care providers’ perspectives. Information on breast cancer risk factors, methods of early detection, initial symptoms, and its treatments are important for encouraging women to seek medical care immediately after recognition of the first symptoms [22, 23]. Our study, however, revealed a poor community awareness and common misperceptions about breast cancer, with little recognition of susceptibility or the benefits of early care seeking after symptom recognition. Because of poor knowledge about breast cancer, women are less likely to perceive the disease as severe and seek medical care if they are not acutely sick [24]. As a painless lump is the common initial presentation of breast cancer, many women disregarded the clinical importance of the first symptoms. Family responsibilities and inability to take time off from work increased the risk of disregarding the severity of the first symptoms. In accordance with these results, previous studies [25, 26] have demonstrated that women’s family engagements and job commitment are an important contributor to late/delayed medical consultation.

Moreover, it was rare to suspect cancer as a cause of the first symptoms of their breast illness. Most of the time the first symptoms of breast cancer were misinterpreted as resulting from non-cancer illnesses such as sun stroke, locally termed “mitch”. In Ethiopia, “mitch” is a local and common terminology used to explain a wide range of nonspecific illnesses in the community [27, 28]. Such beliefs triggered women to delay medical consultation while practicing different home remedies, spiritual acts and traditional medicines intended to treat the perceived cause of their illness, “mitch”. The misattribution of the symptoms is related to the women’s low perceived susceptibility to breast cancer, and poor awareness of the initial symptoms of breast cancer [29]. Similar to our findings, a previous quantitative study conducted in Addis Ababa found that more than half of women had poor knowledge about breast cancer [30]. Thus, increasing awareness of the signs and symptoms of breast cancer in the community could help to minimize such negligence and misattribution of the first symptoms of breast cancer.

Contrary to the misinterpretations of the symptoms, an initial suspicion of cancer deters women from seeking medical care immediately after they recognize the symptoms. This is mainly due to the view in the community that cancer is a deadly disease, and incurable with the existing conventional treatment in the country. Similar perceptions were noted in other studies from Ethiopia [16, 31], India [23], and Iran [26], and studies have reported women refraining from visiting health facility for fear of a confirmed cancer diagnosis [26, 31, 32]. This finding suggests that educating the community about the benefits of early diagnosis and treatment initiation could help to correct the misperceptions and improve health-seeking behavior of women with symptoms suggestive of cancer [33].

Previous studies in Ethiopia have documented that a significant number of people prefer visiting traditional healers before seeking medical care [24, 34]. Similarly, our study revealed that use of traditional medicine was common and the main cause of late diagnosis. For some of the breast cancer patients, seeking medical care was their second option, and only after traditional medicine failed to provide hope of a cure. Such practices have also been noted in other studies [34–36]. Together with late recognition of the first symptoms, the time elapsed on using traditional medicine could further advance stage of the disease and complicate its treatment outcomes. Therefore, involvement and working with traditional healers to create awareness about the symptoms of breast cancer and benefit of early diagnosis could benefit the women who visited the traditional healers for the complaint of breast abnormality.

The affordability of medical care [24] and quality of the health service [23, 37] determine the health care utilization of women who decide to seek care. Shortcomings in either of these could affect a woman’s decision to seek care from the health facilities or push them to seek care from traditional healers [31]. In our study, health system-related factors such as access to healthcare, physicians misunderstanding of the first symptoms, inappropriate reassurance of lump as a benign disease without biopsy, and poor counseling of patients presenting with signs and symptoms suggestive of breast cancer were noted as contributor to late diagnosis. Previous literatures have also revealed that health care providers’ failure to appraise the first symptoms of breast cancer appropriately, and misdiagnosis contributed to delayed diagnosis and disease advancement [26, 32, 38]. This may call the need for training primary health care providers [39, 40] to recognize the first symptoms of breast cancer, and increase the suspicion of breast cancer at first contact. Moreover, breast cancer patients need appropriate advice and discussion on their problem, its consequences and treatment decisions [41]. Most of the breast cancer patients were not ready to accept the diagnosis of their disease as cancer. Often, women became emotionally disturbed at the time of confirmation because of their low suspicion of being diagnosed with breast cancer, perceived fatality of cancer, uncertainty with the effectiveness of the conventional treatment, and fear of losing their breast through surgical treatment.

In contrast to the above barriers, the persuasion by family members and friends was found to be a facilitator for patients to seek medical consultations after they recognized breast cancer symptoms and to make the decision to undergo surgical treatment. This finding has also been documented in a previous study conducted among breast cancer patients and proxies in the same study area (Tikur Anbessa Specialized Hospital, Addis Ababa, Ethiopia) [14].

Early detection is the primary strategy for preventing premature death from breast cancer. Hence, interventions targeted at alleviating the above modifiable barriers [23] must be established in Ethiopia to diagnosis breast cancer at earlier stages. In settings, like Ethiopia, with no breast cancer screening service, early detection is mainly dependent on woman’s knowledge on breast cancer [12], performing regular breast self-examination and immediate medical consultations after recognition of breast abnormalities [42, 43], and immediate health care providers’ referral for confirmation [44]. Our study participants also emphasized the importance of breast self-examination, early medical care seeking, awareness creation and cancer pathology center expansion to improve early detection. Moreover, the study participants emphasized the importance of using breast cancer survivors as community educators to enhance community awareness of breast cancer. Though the effectiveness of this approach has not been investigated in our country, engaging breast cancer survivors as breast health educators [45–47] has led to significant improvement in the knowledge and prevention of breast cancer morbidity and mortality.

Our study included different groups of participants, which helped us to triangulate our findings and examine the reasons of late diagnosis from different perspectives. We attempted to interview recently diagnosed patients, however, recall of past events with a foresight of experience may unconsciously make the stories of these women biased and inaccurate in explaining their experience.

Conclusions

The reasons for the late diagnosis of breast cancer among women in Ethiopia are multi-factorial and include individual, cultural, and health system factors. Interventions targeting these factors could alleviate the misconceptions and knowledge gap about breast cancer in the community, and shorten waiting time between symptom recognition and diagnosis of breast cancer.

Supporting information

Acknowledgments

We would like to thank the staff of the Tikur Anbessa Specialized Hospital oncology clinic for their cooperation and support in arranging the eligible study participants. We would like to thank all of the study participants for their time and cooperation. We would also like to thank Mr. John M. Daniel of the American Cancer Society for editing the manuscript.