Patients’ experiences undergoing breast evaluation in Rwanda’s Women’s Cancer Early Detection Program

Patients’ experiences undergoing breast evaluation in Rwanda’s Women’s Cancer Early Detection Program | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Patients’ experiences undergoing breast evaluation in Rwanda’s Women’s Cancer Early Detection Program Lydia Pace, Amanda Fata, Vincent K Cubaka, Theophile Nsemgiyumva, and 9 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-3043983/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 30 Aug, 2023 Read the published version in Breast Cancer Research and Treatment → Version 1 posted 5 You are reading this latest preprint version Abstract Purpose There is urgent need for interventions to facilitate earlier diagnosis of breast cancer in low- and middle-income countries where mammography screening is not widely available. Understanding patients’ experiences with early detection efforts, whether they are ultimately diagnosed with cancer or benign disease, is critical to optimize interventions and maximize community engagement. We sought to understand the experiences of patients undergoing breast evaluation in Rwanda’s Women’s Cancer Early Detection Program (WCEDP). Methods We conducted in-person semi-structured interviews with 30 patients in two districts of Rwanda participating in the WCEDP. Patients represented a range of ages and both benign and malignant diagnoses. Interviews were recorded, transcribed, translated, and thematically analyzed. Results Participants identified facilitators and barriers of timely care along the breast evaluation pathway. Community awareness initiatives were facilitators to care-seeking, while persistent myths and stigma about cancer were barriers. Participants valued clear clinician-patient communication and emotional support from clinicians and peers. Poverty was a major barrier for participants who described difficulty paying for transport, insurance premiums, and other direct and indirect costs of hospital referrals in particular. COVID-19 lockdowns caused delays for referred patients. Although false-positive clinical breast exams conferred financial and emotional burdens, participants nonetheless voiced appreciation for their experience and felt empowered to monitor their own breast health and share knowledge with others. Conclusion Rwandan women experienced both benefits and burdens as they underwent breast evaluation. Enthusiasm for participation was not reduced by the experience of a false positive result. Reducing financial, logistical and emotional burdens of the breast diagnostic pathway through patient navigation, peer support and decentralization of diagnostic services could improve patients’ experience. Figures Figure 1 Introduction Breast cancer is the most commonly diagnosed cancer worldwide. While incidence remains highest in high-income countries, low- and middle-income countries (LMICs) face a 17% higher breast cancer mortality rate, largely due to late-stage diagnoses.[ 1 , 2 ] In resource-constrained settings where mammography screening is not widely available, strategies to improve early detection of palpable and/or symptomatic breast cancer are urgently needed. The World Health Organization (WHO) has identified three essential steps to facilitate cancer early diagnosis: 1)Awareness of cancer symptoms and accessing care; 2)Clinical evaluation, diagnosis and staging; and 3)Access to treatment.[ 3 ] We previously developed a health worker curriculum and breast health clinics to build capacity for breast cancer early diagnosis in Rwanda, a country of 13 million characterized as low-income by the World Bank.[ 4 ] In a cluster randomized clinical trial (RCT) in one district, the program increased the number of individuals seeking care for breast symptoms and increased early-stage diagnoses.[ 5 ] To scaleup this initiative, Rwanda Biomedical Centre, the country’s agency in charge of health programs implementation, designed the Women’s Cancer Early Detection Program (WCEDP) combining breast cancer early detection with cervical cancer screening. Cancer early diagnosis programs in LMIC must address patient-level challenges including financial toxicity, travel distance, stigma, low breast cancer awareness, and limited trust in the health care system. [ 6 – 10 ] These challenges affect the experiences of patients even if they are not diagnosed with cancer. The majority of women with palpable breast masses on clinical breast exam (CBE) have a false positive finding that requires further evaluation but is ultimately determined not to be cancer. Suboptimal experiences for patients regardless of their final diagnosis could hinder success of early detection programs by undermining awareness messages, limiting adherence to follow-up, and decreasing community engagement.[ 11 , 12 ] Patients’ perspectives are critical to designing early detection programs and to evaluating their benefits (e.g. early treatment initiation) and harms (e.g. false positive results that burden patients and the health care system). However, few studies have explored patients’ experiences with breast cancer early detection initiatives in LMICs.[ 13 , 14 ] In addition, although extensive literature examines patients’ experiences of false-positive mammograms in high-income settings,[ 15 ] there are no studies to our knowledge that explore patients’ experiences with with false positive CBE. To address this gap and understand patients’ perceptions of barriers to and facilitators of timely breast health care in the WCEDP, we conducted semi-structured interviews with patients. Methods Women’s Cancer Early Detection Program The WCEDP launched in Rwamagana and Rubavu Districts in 2018, both largely rural districts where most individuals are involved in agriculture. Rwamagana District is located in the Eastern Province and has a population of 484,953.[ 16 ] Rubavu District is located in the Western Province and has a population of 546,683.[ 17 ] During the study period, the WCEDP provided CBE for all women aged 30–49 receiving cervical cancer screening and any patients requesting breast evaluation (for example, for breast symptoms) regardless of cervical cancer screening eligibility. Community health workers (CHWs) led awareness campaigns to encourage care-seeking and health center nurses and district hospital clinicians received training on CBE and cervical cancer screening. Weekly clinics were held at health centers and district hospitals. Women with abnormal CBE at the health center were referred to the district hospital. When necessary, women were then referred to the cancer referral hospital (most often, Butaro Cancer Center of Excellence, Rwanda’s highest-volume public cancer center) for ultrasound and biopsy. Study design and population Our sampling approach focused on attaining sufficient information-rich cases for analysis.[ 18 ] Based on similar studies[ 19 – 21 ] and available resources, we anticipated 30 interviews (stratifying by district, age, and diagnosis) would be sufficient to meet our study aims. Upon analyzing the initial 30 interviews, we confirmed data adequacy across all key domains of interest.[ 21 ] Data collection tools Interview guides (Appendix A) were based on the WHO early diagnosis framework, review of published surveys[ 22 , 23 ] and input from WCEDP stakeholders. Closed-ended questions gathered the time it took patients to travel to health facilities, time spent at health facilities, and financial costs of travel and medical care. Interviews Between November 24 and December 4, 2020 one investigator (TN) conducted in-person semi-structured interviews with women who had recently obtained care through the WCEDP and represented both districts as well as a distribution of ages, diagnoses, and referral experiences. Participants were selected from WCEDP registries and were invited via phone. Interviews were conducted at health facilities and lasted approximately 30 minutes. Interviews were conducted in Kinyarwanda, audio recorded, transcribed, and then translated into English. JU reviewed Kinyarwanda and English transcripts to ensure Kinyarwanda meaning was preserved. One interview was removed from analysis because the transcription was unusable. Analysis was conducted using an iterative thematic approach.[ 24 ] Three members of the team (LP, AF, JU) open-coded 16 transcripts in English to create a codebook with themes and subthemes. The team piloted the codebook on a subset of transcripts and collaboratively finalized the codebook. All interviews were coded by LP, AF, JU using MAXQDA software.[ 25 ] The coding team then reviewed coded excerpts over a series of meetings and explored thematic categories that emerged across all participants, organizing these according to the WHO early diagnosis steps. Themes were then specifically examined among those who experienced false positives. All participants gave verbal informed consent. This study was approved by the Rwanda National Ethics Committee and the Mass General Brigham Institutional Review Board. Results Patient characteristics We interviewed 15 women in Rubavu and 15 in Rwamagana. In each district, we interviewed three women 50 years old. In each district we included four women diagnosed with breast cancer, four with negative CBE, and seven with false positive CBE (i.e., required referral to higher levels of care following abnormal CBE but were not diagnosed with cancer). Steps of early diagnosis and associated facilitators and barriers We mapped participants’ responses to the 3 stages of cancer early diagnosis defined by the WHO,[ 3 ] characterizing facilitators and barriers of each step (Fig. 1). We compiled wait times at facilities, medical costs, and travel times and costs. Step 1. Awareness and accessing care at primary level facilities Patients described factors that facilitated or limited community awareness of breast cancer, care-seeking for breast concerns, and accessing care at health centers; Table 1 provides example quotations. Table 1 Facilitators and barriers related to Step 1 of early cancer diagnosis: awareness and accessing care at primary level facilities Facilitator or Barrier Example Quotations Facilitators Exposure to educational materials …I had been lucky to run into a handout on breast cancer which helped me to understand its symptoms at the beginning. That handout gave me an explanation about lumps within the armpit and the coming off of a nipple. So, I said to myself that I had to set off to attend our health center for consultation over my breast. - False positive, age 30–50 Learning from others’ experiences Because one of the women from our residential area whose breast was removed, many women, especially those who are too old to deliver children again, say that they would go for consultation to check whether their breasts are healthy. – Negative evaluation, age 30–50 Perceived quality of care and communication at health centers I saw that they gave me good service…So, when they give me that service, I would tell others that there are people out there at the health center who provide the best service and you can go there and check it out and see if you have a problem. – Negative evaluation, age > 50 Impact of participating in the WCEDP on awareness It was difficult for me to sit with someone and start telling her that I had suffered from the breast. However, I happened to overcome that fear and started engaging in such a discussion. Some of the people I talked to have engaged in the discussion with their colleagues. – False positive, age < 30 Before I went to the clinic to have a check-up, I was afraid of breast cancer because whenever I heard about its symptoms, I would feel in my mind that I had the same symptoms. Since I had the check-up, I have never been worried since I have a breast self-exam on regular basis. – Negative evaluation, age < 30 My little girl is starting to grow breasts too and I tell her to check and feel that there is nothing strange inside. If anything is felt, you should immediately go to the doctor. […] Only when a person is treated early, he or she does recover. - Diagnosed with cancer, age > 50 I have changed my mindset because I used to think that when one has cancer he is doomed to die. […] I later learned that, if cancer is detected and treated early, the patient’s chances to survive increase. – False positive, age > 50 Barriers Misunderstanding signs/ symptoms I had abscesses in this breast here in the armpit. First a small abscess appeared, and later another big one appeared inside the breast. I lived with them as they would not cause me any pain. I had no problem with them because they would not prevent me from carrying out my daily activities. -Diagnosed with cancer, age 30–50 Concerns about clinical breast exam I think they can look for equipment to diagnose cancer not just using fingers. We humans, nobody cannot only touch you with fingers and be felt healed. Even if he or she treats you, you do not feel like he or she healed. […] I feel like there is something they put on the part of the body where they think there is cancer, whether it is in it and it immediately shows you that there is cancer. -False positive, age 30–50 I talked with many neighbors. But all of them are cowards. They were afraid to go for a consultation….[one young woman] was ashamed and said: I cannot display my breast to a medical doctor... -Negative evaluation, age > 50 Communication He had not told me the outcome of the exam he had performed….I thought that he had found something which he wanted to keep as a professional secret. – Diagnosed with cancer, age < 30 Time and costs. Patients’ health center wait times ranged from 5 minutes to 7 hours; medical costs ranged from $ 0-1USD (0-1000RWF). Health center travel time and costs were minimal. Facilitators . Some participants learned about breast cancer symptoms and availability of services through WCEDP initiatives such as facility- and community-based educational sessions. Others heard about breast cancer from other sources such as the radio and family and community members. One participant was motivated to seek care after one of her neighbors died from breast cancer; the neighbor had seen a traditional healer rather than a health center nurse for breast symptoms. Some sought evaluation even if they did not exhibit any symptoms, as one participant explained: “It is said that one may have cancer and feel no pain which made me afraid that I might have it.” Most participants described trust in health center clinicians, geographic convenience, and minimal transport costs as facilitators of seeking health center care. Participants praised staff for making them feel “cared for,” and “very comfortable” during CBE and for educating them about screening. All interviewees felt that WCEDP participation increased their breast cancer knowledge and motivation to engage in breast health care and increase awareness in their communities. One participant diagnosed with cancer remarked: “I would advise [my family and friends] that whenever they feel a problem, however small it might be, they should immediately go for consultation.…Once you go for consultation early, you recover.” Another described the impact her successful treatment had on awareness in her community: “People used to flee from me because they thought that they could be infected with my disease….But some people have started changing their minds because they can see that I can walk….People…have changed their mindset about cancer.” Barriers. Stigma, myths, and misconceptions about breast cancer were major barriers to pursuing breast symptom evaluation at the primary level before the WCEDP. One participant had ignored a breast mass because it was small, painless and “did not…prevent [her] from carrying out daily activities.” Participants noted that some women in their communities experienced anxiety or shame related to receiving CBE. One young woman described: “I thought that anybody who would hear that I have checked for a breast problem would think that I have breast cancer…So I decided to keep quiet.” Participants faced barriers to WCEDP care at health centers. Some patients delayed seeking care because of a lack of insurance, or inability to take a day off from farming. Wait times of several hours and limited availability of WCEDP services (one day/ week) were challenging for some. One patient noted “Patients should be received at any time. Patients should not wait until Wednesday.” The COVID-19 pandemic also caused delays in care-seeking due to lockdowns. Although participants largely had positive health center experiences, some expressed skepticism about their care. Several patients expressed surprise at the low-technology nature of CBE and felt imaging would be more accurate. One patient who experienced a false positive noted “We humans, nobody can only touch you with fingers and be healed.” Step 2. Referral for clinical evaluation, diagnosis, and staging For participants requiring referral to the district hospital (n = 21) and/or referral hospital (n = 11), several factors served as facilitators of and barriers to hospital-level services (Table 2 ). Table 2 Facilitators and barriers related to referral for Step 2: clinical evaluation, diagnosis, and staging Facilitator, Barrier, or Reaction Example Quotations Facilitators Efficient linkages to hospital care To be frank, everything took place smoothly. Look, I attended a health center on Wednesday. Then, when I went back there the following Wednesday, I got a transfer to a referral hospital and normally, not many patients attend this service which is meant for breast conditions treatment. [The nurse] was working from maternity service; he was busy attending to a woman over delivery. Despite this, he managed to be available for my good. He ran consultation on me and he decided on efficient medications for me which made me very happy. – False positive, age 30–50 Barriers Long wait times, limited trust at district hospital I arrived there at 8:00 am and showed them the referral letter, but they told me that the specialist was not around. So I had to wait up to 3:00 pm I had been waiting when they went for lunch and I was still waiting when they came back from lunch! – False positive, age > 50 He only palpated and felt nothing wrong with my breasts even if I kept suffering from acute pains; I told this medical doctor that I was, myself, confused about it. – False positive, age 30–50 I did not believe in their words. Look, they told me that there was nothing wrong with my breast by the time when I was feeling unusual acute pains. - False positive, age 30–50 Poverty and financial barriers Transport costs would pose me a challenge in a way or another. After all, even if I had this money for transport, it could have been used to buy Irish potatoes for my children. – False positive, age > 50 [My sister-in-law] tells me that if I were able to get money before undergoing the scanner exam, I would have started the treatment when it was not yet complicated. This is due to poverty. -Diagnosed with cancer, age > 50 [My first concern about referral was] an unknown place and lack of money. We went to sell the farm we had, they gave us little money because it was me and the boy and the husband in the family and we were three and then I went and my husband sold the farm and they gave him a hundred thousand but they had greed two hundred thousand Rwandan francs. The buyer said that he had not the total amount paid what we needed to go to the hospital and the balance will be paid slowly. We accepted and he gave us a hundred and we looked for someone to go with us. We went to Butaro with my sister-in-law for whom we paid the ticket, but she was worried about her child who was going to stay home. We also bought bedding stuff because we thought none was provided to the hospital. - Diagnosed with cancer, age > 50 …my children were still very young. I was concerned about who would prepare their lunches each day … So I asked one of my closer neighbors to look after them on my behalf. I asked many people to do me that favor. – False positive, age > 50 Stigma and fear [ upon receiving her transfer to Butaro ] I was anxious. I was worried because I found no other person and whoever you heard, would tell you “There is no other way forward for patient cancer except dying.” People, simply they said, “cancer is not curable.” - Diagnosed with cancer, age 30–50 [ Upon receiving her transfer to the district hospital ] “When I heard it, I thought that it was the end of my life.” - Diagnosed with cancer, age 30–50 Time and costs. It was more time-consuming and expensive for patients to travel to district hospitals than health centers. Patients’ wait times at district hospitals varied greatly, from 20 minutes to 10 hours; medical costs ranged from $ 0-8USD (0-7700RWF). Among patients seen at the district hospital, the highest amount spent was $ 5USD (5000RWF) on round-trip travel, with most spending $ 0-2USD (0-2200RWF). Medical costs at referral facilities were comparable to district hospitals; among 11 patients seen at referral facilities, most paid < $ 5USD (5000RWF) for medical care. However, non-medical costs and time were consistently higher than health center and district hospital-level care. Three patients spent at least one overnight near the referral hospital while undergoing evaluation. Travel times were 6–9 times greater to referral hospitals compared with health centers. Patients travelling alone spent approximately $ 5USD (5000RWF) round-trip. Facilitators . Participants typically felt the referral process was smooth and appreciated communication between referring and referral hospital clinicians. One participant described “[The health center nurse] told me: ‘Mother, I am going to help you and call [the district] hospital. You cannot go there without knowing the day of testing.’...She did everything to help me.” Barriers. However, patients described many barriers to obtaining hospital-level services. In addition to struggling with transport and medical costs, some had trouble paying premiums for Rwanda’s community-based health insurance. One participant experienced an 8-month delay in completing her district hospital referral because she could not find money for insurance. COVID-19-related lockdowns increased transport costs and limited hospital appointment availability, one participant explaining, “When I was about to go to Butaro, the government declared the lockdown period…I wondered what I would do about my referral.” Some participants described having to choose between paying for transport or food for their children. These struggles were compounded by emotional stress. When patients received their referral, either to the district hospital or—especially—the cancer hospital, they felt alarm since this signaled they had a serious problem. Cancer hospital referrals were particularly anxiety-provoking because of the travel distance and unfamiliarity of the place. One participant explained: “I got worried and said, ‘I do not know the place where they have sent me…whatever the situation [of] the person they have sent to Butaro, it’s to die.’” Long delays at the referral hospital were logistically challenging and stressful and decreased trust. One participant attributed long waits to discrimination, noting “When we are referred to the hospital, it takes a long time to be received and we think that they neglect us because we are poor farmers.” Step 3. Accessing breast cancer treatment Patients diagnosed with breast cancer described positive factors and challenges associated with initiating treatment (Table 3 ). Table 3 Step 3: Facilitators and barriers related to accessing treatment for breast cancer Facilitator or Barrier Example Quotations Facilitators Support from providers and other patients It helped me [to go to the hospital] to some extent because there are whom we met there and would tell that it’s been now three years since I recovered from breast cancer. She would tell you I’ve just come here for checkup. That wipes away all the rumors from people who say that breast cancer is incurable. – Diagnosed with cancer, age 30–50 I was well welcomed from the reception and the medical professionals treated me in a professional way and they did everything in their power to care for me, so I can’t blame them of anything…. This is another reason why I am optimistic about the outcome of my treatment because people who are treating me have a very high-quality service. -Diagnosed with cancer, age 30–50 Barriers Fear of mastectomy I told someone about this problem and they told me that, when you have stage 1 cancer and undergo a surgical operation, it gets worse and kills you. -Diagnosed with cancer, age 30–50 Poverty and logistical delays I asked my father to look for this document [which states socioeconomic status and need for financial support], but initially he was reluctant to do it… My father eventually accepted to look for the document, but when I showed it at Butaro hospital they said that it was not written correctly. They said that they needed information confirming that I was classified as Ubudehe Category I and not [on] a list of my father’s children. I was therefore obliged to go back and, with the support of local government authorities (the latter told my father that he had either to find the document or give me the money I needed for my treatment), my father got an updated document, and I took it to Butaro hospital. Since then, Butaro hospital has been providing me with five thousand and two hundred Rwandan francs (Rfr 5,200) fare to travel back home from the hospital. The challenge I have now is to find fare to travel from home to the hospital. - Diagnosed with cancer, age 30–50 Long travel distance, multiple visits Butaro is far. That’s a whole day in the car… You go a day before meeting the doctor, spend the night, and see him the following day and you spend a second night again. – Diagnosed with cancer, age > 50 Stigma, misconceptions and fear about breast cancer Concerning my treatment process, I still feel ashamed because I have not accepted my condition yet. To tell you the truth, I am ashamed of having only one breast. Look at the layers of clothes I am wearing, even on a sunny day. I am worried that someone could notice that I have only one breast. It is still too much for me to bear. I have not accepted it yet. - Diagnosed with cancer, age 30–50 …I was wondering what would happen to my mother [when I was referred to the hospital] since no one else was ready to care for her due to the stigma we were facing in our household. […]I was already suffering from stigma of caring for a mother who had cancer. They were saying that I had got cancer from my mother because they thought that cancer is an infectious disease. - Diagnosed with cancer, age 30–50 [The doctor] told me: “ You are ill, you will start taking medicines.” He gave me a lot of examples. He told me: “My mother died of that cancer when she was your age. At that time, the country was underdeveloped, with no medicines. But now you are lucky, we have medicines. Why are going home?” I replied: “You are right doctor, let me interiorize it.” I had problems. When I got home, a long time passed by, I did not respect the promise to come after a week. I went and kept quiet at home. – Diagnosed with cancer, age > 50 Facilitators . Participants diagnosed with cancer often felt optimistic about their treatment because of the perceived expertise at Butaro. One participant explained “Going to Butaro alleviated my worries.” Meeting other patients with breast cancer at Butaro was especially comforting: one participant noted that “It has even made me be strong and accept myself” and another described the “courage and perseverance” other patients gave her. Some participants received emotional support from family and community members. Barriers. Participants also expressed fear and confusion around treatment, particularly mastectomy, largely due to prior misconceptions and uncertainty about treatment pans. One participant explained: “I got information from a woman who told me…‘Not being operated is better because you continue to be ill, but you survive for many years. You don’t die immediately….But when a scalpel has penetrated inside your breast, you die immediately.’” Costs associated with treatment were stressful. One participant who had to sell her farm to afford transport for treatment explained “…if I were able to get money…I would have started the treatment when it was not yet complicated.” Other costs such as insurance premiums and loss of work contributed to financial burdens. While some patients gained strength from their families and communities, others described feeling abandoned and struggled to educate those who believed cancer to be incurable or contagious. One participant described, “The most challenging thing for me is the stigma I am suffering from for having this disease…my family has never assisted me during my treatment, for example by providing me with fare. I am therefore obliged to beg neighbors to help me, and I take anything I get.” COVID-19 pandemic-related delays hindered treatment initiation for some. One participant described long delays in treatment initiation and, once the lockdown order was lifted, her struggles continued because her referral had expired and she needed to obtain a new one. Another participant described the moment her doctor told her that her cancer had metastasized and the lockdown had “deteriorated” her case. Experience of a false-positive CBE While some participants with false-positive CBE experienced joy and relief upon learning they did not have cancer, others were confused or skeptical, having been convinced that they had cancer, and wanted more clarity. One participant described being “certain” she had breast cancer and explained she “did not believe [clinicians’] words….that nothing was wrong with my breast.” However, while false positives financially and emotionally burdened patients by incurring cancer-related anxiety and the stress of referrals, most participants felt the experience demonstrated the importance of monitoring their breast health and were already advocating for breast health in their communities. One noted “if I happen to develop the same condition I will attend a health center or hospital at once….[After my experience] I strongly deterred [friends and family from traditional healers] and advised them to attend a health center or a hospital because doctors and other…staff are able to identify the problem with their breast….myself I have had that experience; now I am better.” Discussion Interviews with patients undergoing breast evaluation through Rwanda’s WCEDP illuminate barriers and facilitators that patients encounter during assessment for breast cancer and suggest opportunities for designing patient-centered programs that will be acceptable, feasible, and ultimately effective in facilitating timely cancer diagnoses and treatment initiation. Although our study only included Rwandan women, many factors contributing to late-stage diagnoses (including diagnostic delays, poverty, and stigma) are common across LMIC settings. Further, our study addresses an important gap in the literature; a recent systematic review of factors influencing women’s experiences of breast and cervical cancer screenings in LMICs included just one study on the experiences of women undergoing breast cancer screening.[ 14 ] Thus, we believe that, in addition to informing the WCEDP, our findings have value for guiding development and evaluation of breast cancer early detection programs in other resource-constrained settings[ 26 , 27 ] and can inform global efforts such as the WHO Global Breast Cancer Initiative.[ 28 ] Participants identified facilitators of initial breast evaluation which suggest opportunities to strengthen the WCEDP and other early detection programs. Patients received both beneficial and harmful information from community members, suggesting the importance of leveraging community networks, including cancer survivors, to disseminate accurate messages about cancer detection. Lay media and messaging by health workers were also impactful. Notably, patients interviewed in these WCEDP districts demonstrated strong understanding of and belief in the value of breast cancer early detection, in contrast to a mixed-methods study of Rwandan women in other districts that found that cancer prevention and screening remained a low priority.[ 29 ] Trusting relationships with clinicians, perceived high-quality care, and thorough communication increased patients’ own engagement as well as their desire to engage others in care,[ 7 , 30 ] and this should be emphasized in clinician education.[ 7 ] Participants valued the willingness of some clinicians to help them navigate the health care system, underscoring the potential role of professional or peer navigators. For patients diagnosed with cancer, support and education from other patients was critical, and this could also be leveraged in peer support programs.[ 31 ] Patients faced several barriers to timely diagnosis, highlighting gaps in the current program. Out-of-pocket direct and indirect costs were substantial, particularly for those who required hospital referral. All interviewed patients had Rwanda’s community-based health insurance, and described travel costs that were consistently higher than medical expenditures; this finding is consistent with other studies showing that non-medical costs pose barriers to care in LMICs even when medical costs are minimized.[ 32 – 34 ] Average monthly income in rural areas of Rwanda is about $ 27 USD; for farmers it is about $ 19 USD.[ 35 ] Repeated hospital visits consumed a significant portion of that income. The time associated with travel to and wait times at referral facilities demonstrates the indirect costs (i.e., time off from working) of the diagnostic pathway. Though financial support is available at Butaro Hospital for the lowest-income patients, burdensome administrative requirements for demonstrating eligibility often introduced further delays. Efforts to decentralize diagnostic services, enhance the efficiency of diagnostic workflows at all levels of care, and provide expanded financial support and navigation to patients could alleviate some of this burden. In addition, breast cancer-related stigma led to delays in care-seeking, stress associated with referrals, and substantial emotional distress—and isolation—following cancer diagnoses. Other work has highlighted how breast cancer stigma including concerns about mastectomy is mediated by gender identity and women’s reproductive roles.[ 36 ] In Rwanda, domestic responsibilities fall largely upon women, and these considerations impacted participants’ decisions about care.[ 37 , 38 ] Thus, gender-informed strategies to address stigma, engage caregivers, and support patients through breast evaluation, cancer diagnosis, and treatment, are critical components of early detection programs. As breast cancer early detection initiatives expand in Rwanda and other LMIC, a growing number of women will have false positive CBE findings. For example, in the RCT of the pilot early diagnosis intervention, the number of abnormal CBEs requiring further evaluation at the hospital level was much higher in intervention areas compared to control areas, and the rate of benign breast diagnoses was almost 6 times higher.[ 39 ] The current study suggests important downsides of false positive evaluations. For example, women who experienced a false positive CBE incurred the financial and psychosocial burdens of breast evaluation unnecessarily. However, women with false positive evaluations seemed to derive educational benefit and empowerment from the experience, were engaged in educating their communities about breast cancer early detection, and were interested in receiving breast cancer screening themselves in the future. Although this echoes the findings of some United States studies,[ 40 ] it contrasts with other studies in high-income countries that suggest false-positive mammograms may limit women’s engagement in future screening, for example by reducing trust in the test.[ 41 ] More research is needed to understand the impact of false positive CBE for individuals in sub-Saharan Africa, since this may have important implications for the effectiveness and relative benefits and harms of screening. Our study has limitations. First, the costs described by participants do not reflect all costs associated with breast diagnostic services. However, they provide important preliminary information about indirect and direct costs associated with breast evaluation in Rwanda and have informed development of a patient survey. Second, social desirability bias could have altered patients’ responses to interview questions and limited their willingness to discuss barriers to care, particularly since the interviewer was an employee of Partners In Health, an organization supporting the WCEDP. This bias may explain why themes such as distrust in the healthcare system and poor provider-patient communication, which are barriers in other studies,[ 29 , 30 , 42 ] did not arise as major themes in our analysis. Conclusions This study illuminates patients’ perspectives on a breast cancer early detection initiative in Rwanda. Although patients faced barriers to breast health services (including stigma and cost), they also described benefits. The experience of a false positive result did not diminish individuals’ willingness to engage in breast cancer early detection services in the future, or their interest in encouraging their communities to do so. Our findings can inform national and global efforts to provide patient-centered breast health care and timely cancer diagnoses. Declarations Funding: This work was funded by the Breast Cancer Research Foundation, Grant # BCRF-20-149. Dr. Pace additionally is supported by 1K07CA215819-01A1. Competing interests: The authors have no relevant financial or non-financial interests to disclose. Author contributions: Lydia E. Pace, MD, MPH: Concept and design, provision of study materials, data assembly, data analysis, manuscript writing, final approval of manuscript Amanda Fata, BA: Data analysis, manuscript writing, final approval of manuscript Vincent K. Cubaka, MD, Mmed, PhD: Conception/ design, data interpretation, final approval of manuscript Theophile Nsemgiyumva, BSPH: Collection and/or assembly of data, final approval of manuscript Jean de Dieu Uwihaye, AdvDip: Data analysis and interpretation, final approval of manuscript Catherine Stauber, BA: Collection and/or assembly of data, final approval of manuscript Jean-Marie Vianney Dusengimana, MPH: Provision of study materials and patients, collection and assembly of data, final approval of manuscript Kayleigh Bhangdia, MPH: Conception/ design, final approval of manuscript Lawrence N. Shulman, MD: Final approval of manuscript Anna Revette, PhD: Conception/ design, data interpretation, final approval of manuscript Marc Hagenimana, BSN, MPH: Provision of study material or patients, final approval of manuscript Francois Uwinkindi, MD: Provision of study material or patients, final approval of manuscript Enock Rwamuza, MGHD: Conception/design, provision of study materials, data collection and assembly, data analysis and interpretation, final approval of manuscript Data availability: The data analyzed during the current study are not publicly available, but are available from the corresponding author upon reasonable request. Ethics approval: This study was approved by the Rwanda National Ethics Committee and the Mass General Brigham Institutional Review Board. Consent to participate: All interview participants gave verbal consent. Consent to publish: N/A References Sung H, Ferlay J, Siegel RL, et al. Global Cancer Statistics 2020: GLOBOCAN Estimates of Incidence and Mortality Worldwide for 36 Cancers in 185 Countries. CA Cancer J Clin . May 2021;71(3):209-249. doi:10.3322/caac.21660 Jedy-Agba E, McCormack V, Adebamowo C, Dos-Santos-Silva I. Stage at diagnosis of breast cancer in sub-Saharan Africa: a systematic review and meta-analysis. Lancet Glob Health . Dec 2016;4(12):e923-e935. doi:10.1016/s2214-109x(16)30259-5 World Health Organization. Guide to Early Cancer Diagnosis . 2017. Accessed April 28, 2020. https://www.who.int/cancer/publications/cancer_early_diagnosis/en/ World Bank. Rwanda. 2022. Accessed August 9, 2022. https://data.worldbank.org/country/RW Pace LE, Dusengimana JMV, Shulman LN, et al. Cluster Randomized Trial to Facilitate Breast Cancer Early Diagnosis in a Rural District of Rwanda. Journal of global oncology . Nov 2019;5:1-13. doi:10.1200/jgo.19.00209 Al-Foheidi M, Al-Mansour MM, Ibrahim EM. Breast cancer screening: review of benefits and harms, and recommendations for developing and low-income countries. Med Oncol . Jun 2013;30(2):471. doi:10.1007/s12032-013-0471-5 [doi] Pierz AJ, Randall TC, Castle PE, et al. A scoping review: Facilitators and barriers of cervical cancer screening and early diagnosis of breast cancer in Sub-Saharan African health settings. Gynecol Oncol Rep . Aug 2020;33:100605. doi:10.1016/j.gore.2020.100605 Akuoko CP, Armah E, Sarpong T, Quansah DY, Amankwaa I, Boateng D. Barriers to early presentation and diagnosis of breast cancer among African women living in sub-Saharan Africa. PloS one . 2017;12(2):e0171024. doi:10.1371/journal.pone.0171024 Okoronkwo IL, Ejike-Okoye P, Chinweuba AU, Nwaneri AC. Financial barriers to utilization of screening and treatment services for breast cancer: an equity analysis in Nigeria. Niger J Clin Pract . Mar-Apr 2015;18(2):287-91. doi:NigerJClinPract_2015_18_2_287_151070 [pii] 10.4103/1119-3077.151070 [doi] Nambaziira R, Niteka LC, Dusengimana JMV, et al. Health system costs of a breast cancer early diagnosis programme in a rural district of Rwanda: a retrospective, cross-sectional economic analysis. BMJ Open . 2022;12(6):e062357. doi:10.1136/bmjopen-2022-062357 Román R, Sala M, De La Vega M, et al. Effect of false-positives and women's characteristics on long-term adherence to breast cancer screening. Breast Cancer Res Treat . Nov 2011;130(2):543-52. doi:10.1007/s10549-011-1581-4 Defrank JT, Brewer N. A model of the influence of false-positive mammography screening results on subsequent screening. Health Psychol Rev . 2010;4(2):112-127. doi:10.1080/17437199.2010.500482 Kohler RE, Miller AR, Gutnik L, Lee CN, Gopal S. Experiences and perceptions regarding clinical breast exam screening by trained laywomen in Malawi. Cancer Causes Control . Feb 2017;28(2):137-143. doi:10.1007/s10552-016-0844-0 Akoto EJ, Allsop MJ. Factors Influencing the Experience of Breast and Cervical Cancer Screening Among Women in Low- and Middle-Income Countries: A Systematic Review. JCO Global Oncology . 2023/05/01 2023;(9):e2200359. doi:10.1200/GO.22.00359 Pace LE, Keating NL. A systematic assessment of benefits and risks to guide breast cancer screening decisions. JAMA . Apr 2 2014;311(13):1327-35. doi:1853165 [pii]10.1001/jama.2014.1398 [doi] Akarere ka Rwamagana. Republic of Rwanda. 2023. Akarere ka Rubavu. Republic of Rwanda. 2023. Patton MQ. Qualitative evaluation and research methods . SAGE Publications, inc; 1990. Uwimana A, Dessalegn S, Dusengimana JMV, et al. Integrating breast cancer early detection into a resource-constrained primary health care system: health care workers’ experiences in Rwanda. JCO Global Oncology . 2022; Diala PC, Randa M, Odhiambo J, Ganda G, Cohen CR, Mungo C. Barriers and Facilitators to Integrating Clinical Breast Examinations With Cervical Cancer Screening Programs in Outpatient Clinics in Western Kenya. JCO Global Oncology . 2021;(7):1722-1729. doi:10.1200/go.21.00272 Vasileiou K, Barnett J, Thorpe S, Young T. Characterising and justifying sample size sufficiency in interview-based studies: systematic analysis of qualitative health research over a 15-year period. BMC medical research methodology . 2018;18(1):1-18. Agency for Healthcare Research and Quality. Consumer Assessment of Healthcare Providers and Systems (CAHPS®). Accessed 6/1/2020, https://www.ahrq.gov/cahps/about-cahps/index.html Sharp JW, Hippe DS, Nakigudde G, et al. Modifiable patient-related barriers and their association with breast cancer detection practices among Ugandan women without a diagnosis of breast cancer. PloS one . 2019;14(6):e0217938. doi:10.1371/journal.pone.0217938 Nowell LS, Norris JM, White DE, Moules NJ. Thematic analysis: Striving to meet the trustworthiness criteria. International journal of qualitative methods . 2017;16(1):1609406917733847. MaxQDA. Accessed June 8, 2020, 2020. https://www.maxqda.com/ Ginsburg O, Yip CH, Brooks A, et al. Breast cancer early detection: A phased approach to implementation. Cancer . May 15 2020;126 Suppl 10:2379-2393. doi:10.1002/cncr.32887 Unger-Saldana K. Challenges to the early diagnosis and treatment of breast cancer in developing countries. World J Clin Oncol . Aug 10 2014;5(3):465-77. doi:10.5306/wjco.v5.i3.465 [doi] World Health Organization. The Global Breast Cancer Initiative (GBCI) . 2022. June 30. https://www.who.int/publications/m/item/the-global-breast-cancer-initiative-gbci Adler AJ, Randall T, Schwartz LN, et al. What women want: A mixed-methods study of women's health priorities, preferences, and experiences in care in three Rwandan rural districts. Int J Gynaecol Obstet . Feb 23 2023;doi:10.1002/ijgo.14735 Cubaka VK, Schriver M, Kayitare JB, et al. 'He should feel your pain': Patient insights on patient-provider communication in Rwanda. Afr J Prim Health Care Fam Med . Apr 16 2018;10(1):e1-e11. doi:10.4102/phcfm.v10i1.1514 Hu J, Wang X, Guo S, et al. Peer support interventions for breast cancer patients: a systematic review. Breast Cancer Res Treat . Apr 2019;174(2):325-341. doi:10.1007/s10549-018-5033-2 O'Neill KM, Mandigo M, Pyda J, et al. Out-of-pocket expenses incurred by patients obtaining free breast cancer care in Haiti: A pilot study. Surgery . Sep 2015;158(3):747-55. doi:10.1016/j.surg.2015.04.040 Ngabo F, Mvundura M, Gazley L, et al. The Economic Burden Attributable to a Child's Inpatient Admission for Diarrheal Disease in Rwanda. PloS one . 2016;11(2):e0149805. doi:10.1371/journal.pone.0149805 Niyigena A, Alayande B, Bikorimana L, et al. The true costs of cesarean delivery for patients in rural Rwanda: Accounting for post-discharge expenses in estimated health expenditures. Int J Equity Health . May 8 2022;21(1):62. doi:10.1186/s12939-022-01664-x National Institute of Statistics of Rwanda. Integrated Household Living Conditions Survey 5 (EICV 5). National Institute of Statistics of Rwanda Rwanda; 2018. Martei YM, Vanderpuye V, Jones BA. Fear of Mastectomy Associated with Delayed Breast Cancer Presentation Among Ghanaian Women. The oncologist (Dayton, Ohio) . 2018;23(12):1446-1452. doi:10.1634/theoncologist.2017-0409 Slegh H, Barker G, Kimonyo A, Ndolimana P, Bannerman M. ‘I can do women's work’: reflections on engaging men as allies in women's economic empowerment in Rwanda. Gender & Development . 2013;21(1):15-30. National Institute of Statistics Rwanda. EICV3 Thematic Report: Gender . 2012. Pace LE, Dusengimana JMV, Shulman LN, et al. Cluster Randomized Trial to Facilitate Breast Cancer Early Diagnosis in a Rural District of Rwanda. Journal of global oncology . 2019;5(5):1-13. doi:10.1200/JGO.19.00209 Systematic Review: The Long-Term Effects of False-Positive Mammograms. Annals of Internal Medicine . 2007;146(7):502-510. doi:10.7326/0003-4819-146-7-200704030-00006 %m 17404352 DeFrank JT, Rimer BK, Bowling JM, Earp JA, Breslau ES, Brewer NT. Influence of false-positive mammography results on subsequent screening: do physician recommendations buffer negative effects? Journal of Medical Screening . 2012;19(1):35-41. doi:10.1258/jms.2012.011123 Cubaka VK, Schriver M, Cotton P, Nyirazinyoye L, Kallestrup P. Providers’ perceptions of communication with patients in primary healthcare in Rwanda. PloS one . Apr 2018 2020-01-03 2018;13(4)doi:https://doi.org/10.1371/journal.pone.0195269 Supplementary Files InterviewGuideAppendixA.docx Cite Share Download PDF Status: Published Journal Publication published 30 Aug, 2023 Read the published version in Breast Cancer Research and Treatment → Version 1 posted Editorial decision: Minor Revisions Needed 13 Jul, 2023 Reviewers agreed at journal 28 Jun, 2023 Reviewers invited by journal 25 Jun, 2023 Editor assigned by journal 12 Jun, 2023 First submitted to journal 12 Jun, 2023 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-3043983","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":213050073,"identity":"c39b1e33-81ae-466b-a18e-a620ed7aab7b","order_by":0,"name":"Lydia Pace","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA40lEQVRIiWNgGAWjYBACPjBZcYDBgIEHKnSAgUECnxY2MHmGZC2MbSRpkW5++OHjvDuJ2xl4D36ubLPL5zvAfPA2Dz4tMseMJWdue5a4s4EvWfJsW7LlzANsydZ4tUgkmDHzbjucu+EAj4FkwxlmA4MDPGbS+LWkf2P+Owesxfhnw5l6oBb+bwS05JgxMzaAtZhJNlQcBtnChl+LzJliyZ5jz+o3HOYxs2yoOG4geZjN2HIOHi380u0bP/youWNscLzH+GaDQbUB3/Hmhzfe4NGCiAJmDAZBLaNgFIyCUTAKcAEAASJNT+wOt8cAAAAASUVORK5CYII=","orcid":"https://orcid.org/0000-0002-5378-0296","institution":"Brigham and Women's Hospital","correspondingAuthor":true,"prefix":"","firstName":"Lydia","middleName":"","lastName":"Pace","suffix":""},{"id":213050074,"identity":"629d4128-214a-4c18-bdf2-6b3e870d246a","order_by":1,"name":"Amanda Fata","email":"","orcid":"","institution":"Brigham and Women's Hospital","correspondingAuthor":false,"prefix":"","firstName":"Amanda","middleName":"","lastName":"Fata","suffix":""},{"id":213050075,"identity":"ec424272-8303-4d13-8cf4-476e17d77380","order_by":2,"name":"Vincent K Cubaka","email":"","orcid":"","institution":"Partners In Health","correspondingAuthor":false,"prefix":"","firstName":"Vincent","middleName":"K","lastName":"Cubaka","suffix":""},{"id":213050076,"identity":"3e412a7e-8e36-4ac3-9fb4-061efb29f282","order_by":3,"name":"Theophile Nsemgiyumva","email":"","orcid":"","institution":"USAID Rwanda Integrated Health System Activity","correspondingAuthor":false,"prefix":"","firstName":"Theophile","middleName":"","lastName":"Nsemgiyumva","suffix":""},{"id":213050077,"identity":"f8f2f7cd-32e9-46da-b7bb-2e601601803f","order_by":4,"name":"Jean de Dieu Uwihaye","email":"","orcid":"","institution":"Partners In Health","correspondingAuthor":false,"prefix":"","firstName":"Jean","middleName":"de Dieu","lastName":"Uwihaye","suffix":""},{"id":213050078,"identity":"a1318cf3-4e02-4339-abba-c888d043db06","order_by":5,"name":"Catherine Stauber","email":"","orcid":"","institution":"Dell Medical School, University of Texas","correspondingAuthor":false,"prefix":"","firstName":"Catherine","middleName":"","lastName":"Stauber","suffix":""},{"id":213050079,"identity":"2ccfad1c-fdc5-4709-b252-5e4439698c1a","order_by":6,"name":"Jean-Marie Vianney Dusengimana","email":"","orcid":"","institution":"Partners In Health","correspondingAuthor":false,"prefix":"","firstName":"Jean-Marie","middleName":"Vianney","lastName":"Dusengimana","suffix":""},{"id":213050080,"identity":"0fa07f91-069a-47f7-a9c2-a570dfe8e856","order_by":7,"name":"Kayleigh Bhangdia","email":"","orcid":"","institution":"Institute for Health Metrics and Evaluation","correspondingAuthor":false,"prefix":"","firstName":"Kayleigh","middleName":"","lastName":"Bhangdia","suffix":""},{"id":213050081,"identity":"b1f79862-b8c0-4355-b26b-29377db9c633","order_by":8,"name":"Lawrence N. 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While incidence remains highest in high-income countries, low- and middle-income countries (LMICs) face a 17% higher breast cancer mortality rate, largely due to late-stage diagnoses.[\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e] In resource-constrained settings where mammography screening is not widely available, strategies to improve early detection of palpable and/or symptomatic breast cancer are urgently needed. The World Health Organization (WHO) has identified three essential steps to facilitate cancer early diagnosis: 1)Awareness of cancer symptoms and accessing care; 2)Clinical evaluation, diagnosis and staging; and 3)Access to treatment.[\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]\u003c/p\u003e \u003cp\u003eWe previously developed a health worker curriculum and breast health clinics to build capacity for breast cancer early diagnosis in Rwanda, a country of 13\u0026nbsp;million characterized as low-income by the World Bank.[\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e] In a cluster randomized clinical trial (RCT) in one district, the program increased the number of individuals seeking care for breast symptoms and increased early-stage diagnoses.[\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e] To scaleup this initiative, Rwanda Biomedical Centre, the country\u0026rsquo;s agency in charge of health programs implementation, designed the Women\u0026rsquo;s Cancer Early Detection Program (WCEDP) combining breast cancer early detection with cervical cancer screening.\u003c/p\u003e \u003cp\u003eCancer early diagnosis programs in LMIC must address patient-level challenges including financial toxicity, travel distance, stigma, low breast cancer awareness, and limited trust in the health care system. [\u003cspan additionalcitationids=\"CR7 CR8 CR9\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e] These challenges affect the experiences of patients even if they are not diagnosed with cancer. The majority of women with palpable breast masses on clinical breast exam (CBE) have a false positive finding that requires further evaluation but is ultimately determined not to be cancer. Suboptimal experiences for patients regardless of their final diagnosis could hinder success of early detection programs by undermining awareness messages, limiting adherence to follow-up, and decreasing community engagement.[\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]\u003c/p\u003e \u003cp\u003ePatients\u0026rsquo; perspectives are critical to designing early detection programs and to evaluating their benefits (e.g. early treatment initiation) and harms (e.g. false positive results that burden patients and the health care system). However, few studies have explored patients\u0026rsquo; experiences with breast cancer early detection initiatives in LMICs.[\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e] In addition, although extensive literature examines patients\u0026rsquo; experiences of false-positive mammograms in high-income settings,[\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e] there are no studies to our knowledge that explore patients\u0026rsquo; experiences with with false positive CBE. To address this gap and understand patients\u0026rsquo; perceptions of barriers to and facilitators of timely breast health care in the WCEDP, we conducted semi-structured interviews with patients.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eWomen\u0026rsquo;s Cancer Early Detection Program\u003c/h2\u003e \u003cp\u003eThe WCEDP launched in Rwamagana and Rubavu Districts in 2018, both largely rural districts where most individuals are involved in agriculture. Rwamagana District is located in the Eastern Province and has a population of 484,953.[\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e16\u003c/span\u003e] Rubavu District is located in the Western Province and has a population of 546,683.[\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e17\u003c/span\u003e]\u003c/p\u003e \u003cp\u003eDuring the study period, the WCEDP provided CBE for all women aged 30\u0026ndash;49 receiving cervical cancer screening and any patients requesting breast evaluation (for example, for breast symptoms) regardless of cervical cancer screening eligibility. Community health workers (CHWs) led awareness campaigns to encourage care-seeking and health center nurses and district hospital clinicians received training on CBE and cervical cancer screening. Weekly clinics were held at health centers and district hospitals. Women with abnormal CBE at the health center were referred to the district hospital. When necessary, women were then referred to the cancer referral hospital (most often, Butaro Cancer Center of Excellence, Rwanda\u0026rsquo;s highest-volume public cancer center) for ultrasound and biopsy.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eStudy design and population\u003c/h2\u003e \u003cp\u003eOur sampling approach focused on attaining sufficient information-rich cases for analysis.[\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e18\u003c/span\u003e] Based on similar studies[\u003cspan additionalcitationids=\"CR20\" citationid=\"CR20\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e21\u003c/span\u003e] and available resources, we anticipated 30 interviews (stratifying by district, age, and diagnosis) would be sufficient to meet our study aims. Upon analyzing the initial 30 interviews, we confirmed data adequacy across all key domains of interest.[\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e21\u003c/span\u003e]\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eData collection tools\u003c/h2\u003e \u003cp\u003eInterview guides (Appendix A) were based on the WHO early diagnosis framework, review of published surveys[\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e23\u003c/span\u003e] and input from WCEDP stakeholders. Closed-ended questions gathered the time it took patients to travel to health facilities, time spent at health facilities, and financial costs of travel and medical care.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eInterviews\u003c/h2\u003e \u003cp\u003eBetween November 24 and December 4, 2020 one investigator (TN) conducted in-person semi-structured interviews with women who had recently obtained care through the WCEDP and represented both districts as well as a distribution of ages, diagnoses, and referral experiences. Participants were selected from WCEDP registries and were invited via phone. Interviews were conducted at health facilities and lasted approximately 30 minutes. Interviews were conducted in Kinyarwanda, audio recorded, transcribed, and then translated into English. JU reviewed Kinyarwanda and English transcripts to ensure Kinyarwanda meaning was preserved. One interview was removed from analysis because the transcription was unusable.\u003c/p\u003e \u003cp\u003eAnalysis was conducted using an iterative thematic approach.[\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e24\u003c/span\u003e] Three members of the team (LP, AF, JU) open-coded 16 transcripts in English to create a codebook with themes and subthemes. The team piloted the codebook on a subset of transcripts and collaboratively finalized the codebook. All interviews were coded by LP, AF, JU using MAXQDA software.[\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e25\u003c/span\u003e] The coding team then reviewed coded excerpts over a series of meetings and explored thematic categories that emerged across all participants, organizing these according to the WHO early diagnosis steps. Themes were then specifically examined among those who experienced false positives.\u003c/p\u003e \u003cp\u003e All participants gave verbal informed consent. This study was approved by the Rwanda National Ethics Committee and the Mass General Brigham Institutional Review Board.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003ePatient characteristics\u003c/h2\u003e \u003cp\u003eWe interviewed 15 women in Rubavu and 15 in Rwamagana. In each district, we interviewed three women\u0026thinsp;\u0026lt;\u0026thinsp;30 years old, five 30\u0026ndash;50 years old, and seven\u0026thinsp;\u0026gt;\u0026thinsp;50 years old. In each district we included four women diagnosed with breast cancer, four with negative CBE, and seven with false positive CBE (i.e., required referral to higher levels of care following abnormal CBE but were not diagnosed with cancer).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eSteps of early diagnosis and associated facilitators and barriers\u003c/h2\u003e \u003cp\u003eWe mapped participants\u0026rsquo; responses to the 3 stages of cancer early diagnosis defined by the WHO,[\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e] characterizing facilitators and barriers of each step (Fig.\u0026nbsp;1). We compiled wait times at facilities, medical costs, and travel times and costs.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eStep 1. Awareness and accessing care at primary level facilities\u003c/h2\u003e \u003cp\u003ePatients described factors that facilitated or limited community awareness of breast cancer, care-seeking for breast concerns, and accessing care at health centers; Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e provides example quotations.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eFacilitators and barriers related to Step 1 of early cancer diagnosis: awareness and accessing care at primary level facilities\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFacilitator or Barrier\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eExample Quotations\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFacilitators\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003eExposure to educational materials\u003c/em\u003e\u003c/p\u003e \u003cp\u003e\u0026hellip;I had been lucky to run into a handout on breast cancer which helped me to understand its symptoms at the beginning. That handout gave me an explanation about lumps within the armpit and the coming off of a nipple. So, I said to myself that I had to set off to attend our health center for consultation over my breast. - False positive, age 30\u0026ndash;50\u003c/p\u003e \u003cp\u003e\u003cem\u003eLearning from others\u0026rsquo; experiences\u003c/em\u003e\u003c/p\u003e \u003cp\u003eBecause one of the women from our residential area whose breast was removed, many women, especially those who are too old to deliver children again, say that they would go for consultation to check whether their breasts are healthy. \u0026ndash; Negative evaluation, age 30\u0026ndash;50\u003c/p\u003e \u003cp\u003e\u003cem\u003ePerceived quality of care and communication at health centers\u003c/em\u003e\u003c/p\u003e \u003cp\u003eI saw that they gave me good service\u0026hellip;So, when they give me that service, I would tell others that there are people out there at the health center who provide the best service and you can go there and check it out and see if you have a problem. \u0026ndash; Negative evaluation, age\u0026thinsp;\u0026gt;\u0026thinsp;50\u003c/p\u003e \u003cp\u003e\u003cem\u003eImpact of participating in the WCEDP on awareness\u003c/em\u003e\u003c/p\u003e \u003cp\u003eIt was difficult for me to sit with someone and start telling her that I had suffered from the breast. However, I happened to overcome that fear and started engaging in such a discussion. Some of the people I talked to have engaged in the discussion with their colleagues. \u0026ndash; False positive, age\u0026thinsp;\u0026lt;\u0026thinsp;30\u003c/p\u003e \u003cp\u003eBefore I went to the clinic to have a check-up, I was afraid of breast cancer because whenever I heard about its symptoms, I would feel in my mind that I had the same symptoms. Since I had the check-up, I have never been worried since I have a breast self-exam on regular basis. \u0026ndash; Negative evaluation, age\u0026thinsp;\u0026lt;\u0026thinsp;30\u003c/p\u003e \u003cp\u003eMy little girl is starting to grow breasts too and I tell her to check and feel that there is nothing strange inside. If anything is felt, you should immediately go to the doctor. [\u0026hellip;] Only when a person is treated early, he or she does recover. - Diagnosed with cancer, age\u0026thinsp;\u0026gt;\u0026thinsp;50\u003c/p\u003e \u003cp\u003eI have changed my mindset because I used to think that when one has cancer he is doomed to die. [\u0026hellip;] I later learned that, if cancer is detected and treated early, the patient\u0026rsquo;s chances to survive increase. \u0026ndash; False positive, age\u0026thinsp;\u0026gt;\u0026thinsp;50\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBarriers\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003eMisunderstanding signs/ symptoms\u003c/em\u003e\u003c/p\u003e \u003cp\u003eI had abscesses in this breast here in the armpit. First a small abscess appeared, and later another big one appeared inside the breast. I lived with them as they would not cause me any pain. I had no problem with them because they would not prevent me from carrying out my daily activities. -Diagnosed with cancer, age 30\u0026ndash;50\u003c/p\u003e \u003cp\u003e\u003cem\u003eConcerns about clinical breast exam\u003c/em\u003e\u003c/p\u003e \u003cp\u003eI think they can look for equipment to diagnose cancer not just using fingers. We humans, nobody cannot only touch you with fingers and be felt healed. Even if he or she treats you, you do not feel like he or she healed. [\u0026hellip;] I feel like there is something they put on the part of the body where they think there is cancer, whether it is in it and it immediately shows you that there is cancer. -False positive, age 30\u0026ndash;50\u003c/p\u003e \u003cp\u003eI talked with many neighbors. But all of them are cowards. They were afraid to go for a consultation\u0026hellip;.[one young woman] was ashamed and said: I cannot display my breast to a medical doctor... -Negative evaluation, age\u0026thinsp;\u0026gt;\u0026thinsp;50\u003c/p\u003e \u003cp\u003e\u003cem\u003eCommunication\u003c/em\u003e\u003c/p\u003e \u003cp\u003eHe had not told me the outcome of the exam he had performed\u0026hellip;.I thought that he had found something which he wanted to keep as a professional secret. \u0026ndash; Diagnosed with cancer, age\u0026thinsp;\u0026lt;\u0026thinsp;30\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003eTime and costs.\u003c/em\u003e Patients\u0026rsquo; health center wait times ranged from 5 minutes to 7 hours; medical costs ranged from \u003cspan\u003e$\u003c/span\u003e0-1USD (0-1000RWF). Health center travel time and costs were minimal.\u003c/p\u003e \u003cp\u003e \u003cem\u003eFacilitators\u003c/em\u003e. Some participants learned about breast cancer symptoms and availability of services through WCEDP initiatives such as facility- and community-based educational sessions. Others heard about breast cancer from other sources such as the radio and family and community members. One participant was motivated to seek care after one of her neighbors died from breast cancer; the neighbor had seen a traditional healer rather than a health center nurse for breast symptoms. Some sought evaluation even if they did not exhibit any symptoms, as one participant explained: \u0026ldquo;It is said that one may have cancer and feel no pain which made me afraid that I might have it.\u0026rdquo;\u003c/p\u003e \u003cp\u003eMost participants described trust in health center clinicians, geographic convenience, and minimal transport costs as facilitators of seeking health center care. Participants praised staff for making them feel \u0026ldquo;cared for,\u0026rdquo; and \u0026ldquo;very comfortable\u0026rdquo; during CBE and for educating them about screening.\u003c/p\u003e \u003cp\u003eAll interviewees felt that WCEDP participation increased their breast cancer knowledge and motivation to engage in breast health care and increase awareness in their communities. One participant diagnosed with cancer remarked: \u0026ldquo;I would advise [my family and friends] that whenever they feel a problem, however small it might be, they should immediately go for consultation.\u0026hellip;Once you go for consultation early, you recover.\u0026rdquo; Another described the impact her successful treatment had on awareness in her community: \u0026ldquo;People used to flee from me because they thought that they could be infected with my disease\u0026hellip;.But some people have started changing their minds because they can see that I can walk\u0026hellip;.People\u0026hellip;have changed their mindset about cancer.\u0026rdquo;\u003c/p\u003e \u003cp\u003e \u003cem\u003eBarriers.\u003c/em\u003e Stigma, myths, and misconceptions about breast cancer were major barriers to pursuing breast symptom evaluation at the primary level before the WCEDP. One participant had ignored a breast mass because it was small, painless and \u0026ldquo;did not\u0026hellip;prevent [her] from carrying out daily activities.\u0026rdquo; Participants noted that some women in their communities experienced anxiety or shame related to receiving CBE. One young woman described: \u0026ldquo;I thought that anybody who would hear that I have checked for a breast problem would think that I have breast cancer\u0026hellip;So I decided to keep quiet.\u0026rdquo;\u003c/p\u003e \u003cp\u003eParticipants faced barriers to WCEDP care at health centers. Some patients delayed seeking care because of a lack of insurance, or inability to take a day off from farming. Wait times of several hours and limited availability of WCEDP services (one day/ week) were challenging for some. One patient noted \u0026ldquo;Patients should be received at any time. Patients should not wait until Wednesday.\u0026rdquo; The COVID-19 pandemic also caused delays in care-seeking due to lockdowns.\u003c/p\u003e \u003cp\u003eAlthough participants largely had positive health center experiences, some expressed skepticism about their care. Several patients expressed surprise at the low-technology nature of CBE and felt imaging would be more accurate. One patient who experienced a false positive noted \u0026ldquo;We humans, nobody can only touch you with fingers and be healed.\u0026rdquo;\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eStep 2. Referral for clinical evaluation, diagnosis, and staging\u003c/h2\u003e \u003cp\u003eFor participants requiring referral to the district hospital (n\u0026thinsp;=\u0026thinsp;21) and/or referral hospital (n\u0026thinsp;=\u0026thinsp;11), several factors served as facilitators of and barriers to hospital-level services (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eFacilitators and barriers related to referral for Step 2: clinical evaluation, diagnosis, and staging\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFacilitator, Barrier, or Reaction\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eExample Quotations\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFacilitators\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003eEfficient linkages to hospital care\u003c/em\u003e\u003c/p\u003e \u003cp\u003eTo be frank, everything took place smoothly. Look, I attended a health center on Wednesday. Then, when I went back there the following Wednesday, I got a transfer to a referral hospital and normally, not many patients attend this service which is meant for breast conditions treatment. [The nurse] was working from maternity service; he was busy attending to a woman over delivery. Despite this, he managed to be available for my good. He ran consultation on me and he decided on efficient medications for me which made me very happy. \u0026ndash; False positive, age 30\u0026ndash;50\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBarriers\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003eLong wait times, limited trust at district hospital\u003c/em\u003e\u003c/p\u003e \u003cp\u003eI arrived there at 8:00 am and showed them the referral letter, but they told me that the specialist was not around. So I had to wait up to 3:00 pm I had been waiting when they went for lunch and I was still waiting when they came back from lunch! \u0026ndash; False positive, age\u0026thinsp;\u0026gt;\u0026thinsp;50\u003c/p\u003e \u003cp\u003eHe only palpated and felt nothing wrong with my breasts even if I kept suffering from acute pains; I told this medical doctor that I was, myself, confused about it. \u0026ndash; False positive, age 30\u0026ndash;50\u003c/p\u003e \u003cp\u003eI did not believe in their words. Look, they told me that there was nothing wrong with my breast by the time when I was feeling unusual acute pains. - False positive, age 30\u0026ndash;50\u003c/p\u003e \u003cp\u003e\u003cem\u003ePoverty and financial barriers\u003c/em\u003e\u003c/p\u003e \u003cp\u003eTransport costs would pose me a challenge in a way or another. After all, even if I had this money for transport, it could have been used to buy Irish potatoes for my children. \u0026ndash; False positive, age\u0026thinsp;\u0026gt;\u0026thinsp;50\u003c/p\u003e \u003cp\u003e[My sister-in-law] tells me that if I were able to get money before undergoing the scanner exam, I would have started the treatment when it was not yet complicated. This is due to poverty. -Diagnosed with cancer, age\u0026thinsp;\u0026gt;\u0026thinsp;50\u003c/p\u003e \u003cp\u003e[My first concern about referral was] an unknown place and lack of money. We went to sell the farm we had, they gave us little money because it was me and the boy and the husband in the family and we were three and then I went and my husband sold the farm and they gave him a hundred thousand but they had greed two hundred thousand Rwandan francs. The buyer said that he had not the total amount paid what we needed to go to the hospital and the balance will be paid slowly. We accepted and he gave us a hundred and we looked for someone to go with us. We went to Butaro with my sister-in-law for whom we paid the ticket, but she was worried about her child who was going to stay home. We also bought bedding stuff because we thought none was provided to the hospital. - Diagnosed with cancer, age\u0026thinsp;\u0026gt;\u0026thinsp;50\u003c/p\u003e \u003cp\u003e\u0026hellip;my children were still very young. I was concerned about who would prepare their lunches each day \u0026hellip; So I asked one of my closer neighbors to look after them on my behalf. I asked many people to do me that favor. \u0026ndash; False positive, age\u0026thinsp;\u0026gt;\u0026thinsp;50\u003c/p\u003e \u003cp\u003e\u003cem\u003eStigma and fear\u003c/em\u003e\u003c/p\u003e \u003cp\u003e[\u003cem\u003eupon receiving her transfer to Butaro\u003c/em\u003e] I was anxious. I was worried because I found no other person and whoever you heard, would tell you \u0026ldquo;There is no other way forward for patient cancer except dying.\u0026rdquo; People, simply they said, \u0026ldquo;cancer is not curable.\u0026rdquo; - Diagnosed with cancer, age 30\u0026ndash;50\u003c/p\u003e \u003cp\u003e[\u003cem\u003eUpon receiving her transfer to the district hospital\u003c/em\u003e] \u0026ldquo;When I heard it, I thought that it was the end of my life.\u0026rdquo; - Diagnosed with cancer, age 30\u0026ndash;50\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003eTime and costs.\u003c/em\u003e It was more time-consuming and expensive for patients to travel to district hospitals than health centers. Patients\u0026rsquo; wait times at district hospitals varied greatly, from 20 minutes to 10 hours; medical costs ranged from \u003cspan\u003e$\u003c/span\u003e0-8USD (0-7700RWF). Among patients seen at the district hospital, the highest amount spent was \u003cspan\u003e$\u003c/span\u003e5USD (5000RWF) on round-trip travel, with most spending \u003cspan\u003e$\u003c/span\u003e0-2USD (0-2200RWF).\u003c/p\u003e \u003cp\u003eMedical costs at referral facilities were comparable to district hospitals; among 11 patients seen at referral facilities, most paid \u0026lt;\u003cspan\u003e$\u003c/span\u003e5USD (5000RWF) for medical care. However, non-medical costs and time were consistently higher than health center and district hospital-level care. Three patients spent at least one overnight near the referral hospital while undergoing evaluation. Travel times were 6\u0026ndash;9 times greater to referral hospitals compared with health centers. Patients travelling alone spent approximately \u003cspan\u003e$\u003c/span\u003e5USD (5000RWF) round-trip.\u003c/p\u003e \u003cp\u003e\u003cem\u003eFacilitators\u003c/em\u003e. Participants typically felt the referral process was smooth and appreciated communication between referring and referral hospital clinicians. One participant described \u0026ldquo;[The health center nurse] told me: \u0026lsquo;Mother, I am going to help you and call [the district] hospital. You cannot go there without knowing the day of testing.\u0026rsquo;...She did everything to help me.\u0026rdquo;\u003c/p\u003e \u003cp\u003e \u003cem\u003eBarriers.\u003c/em\u003e However, patients described many barriers to obtaining hospital-level services. In addition to struggling with transport and medical costs, some had trouble paying premiums for Rwanda\u0026rsquo;s community-based health insurance. One participant experienced an 8-month delay in completing her district hospital referral because she could not find money for insurance. COVID-19-related lockdowns increased transport costs and limited hospital appointment availability, one participant explaining, \u0026ldquo;When I was about to go to Butaro, the government declared the lockdown period\u0026hellip;I wondered what I would do about my referral.\u0026rdquo; Some participants described having to choose between paying for transport or food for their children.\u003c/p\u003e \u003cp\u003eThese struggles were compounded by emotional stress. When patients received their referral, either to the district hospital or\u0026mdash;especially\u0026mdash;the cancer hospital, they felt alarm since this signaled they had a serious problem. Cancer hospital referrals were particularly anxiety-provoking because of the travel distance and unfamiliarity of the place. One participant explained: \u0026ldquo;I got worried and said, \u0026lsquo;I do not know the place where they have sent me\u0026hellip;whatever the situation [of] the person they have sent to Butaro, it\u0026rsquo;s to die.\u0026rsquo;\u0026rdquo;\u003c/p\u003e \u003cp\u003eLong delays at the referral hospital were logistically challenging and stressful and decreased trust. One participant attributed long waits to discrimination, noting \u0026ldquo;When we are referred to the hospital, it takes a long time to be received and we think that they neglect us because we are poor farmers.\u0026rdquo;\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eStep 3. Accessing breast cancer treatment\u003c/h2\u003e \u003cp\u003ePatients diagnosed with breast cancer described positive factors and challenges associated with initiating treatment (Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eStep 3: Facilitators and barriers related to accessing treatment for breast cancer\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFacilitator or Barrier\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eExample Quotations\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFacilitators\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003eSupport from providers and other patients\u003c/em\u003e\u003c/p\u003e \u003cp\u003eIt helped me [to go to the hospital] to some extent because there are whom we met there and would tell that it\u0026rsquo;s been now three years since I recovered from breast cancer. She would tell you I\u0026rsquo;ve just come here for checkup. That wipes away all the rumors from people who say that breast cancer is incurable. \u0026ndash; Diagnosed with cancer, age 30\u0026ndash;50\u003c/p\u003e \u003cp\u003eI was well welcomed from the reception and the medical professionals treated me in a professional way and they did everything in their power to care for me, so I can\u0026rsquo;t blame them of anything\u0026hellip;. This is another reason why I am optimistic about the outcome of my treatment because people who are treating me have a very high-quality service. -Diagnosed with cancer, age 30\u0026ndash;50\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBarriers\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cem\u003eFear of mastectomy\u003c/em\u003e\u003c/p\u003e \u003cp\u003eI told someone about this problem and they told me that, when you have stage 1 cancer and undergo a surgical operation, it gets worse and kills you. -Diagnosed with cancer, age 30\u0026ndash;50\u003c/p\u003e \u003cp\u003e\u003cem\u003ePoverty and logistical delays\u003c/em\u003e\u003c/p\u003e \u003cp\u003eI asked my father to look for this document [which states socioeconomic status and need for financial support], but initially he was reluctant to do it\u0026hellip; My father eventually accepted to look for the document, but when I showed it at Butaro hospital they said that it was not written correctly. They said that they needed information confirming that I was classified as Ubudehe Category I and not [on] a list of my father\u0026rsquo;s children. I was therefore obliged to go back and, with the support of local government authorities (the latter told my father that he had either to find the document or give me the money I needed for my treatment), my father got an updated document, and I took it to Butaro hospital. Since then, Butaro hospital has been providing me with five thousand and two hundred Rwandan francs (Rfr 5,200) fare to travel back home from the hospital. The challenge I have now is to find fare to travel from home to the hospital. - Diagnosed with cancer, age 30\u0026ndash;50\u003c/p\u003e \u003cp\u003e\u003cem\u003eLong travel distance, multiple visits\u003c/em\u003e\u003c/p\u003e \u003cp\u003eButaro is far. That\u0026rsquo;s a whole day in the car\u0026hellip; You go a day before meeting the doctor, spend the night, and see him the following day and you spend a second night again. \u0026ndash; Diagnosed with cancer, age\u0026thinsp;\u0026gt;\u0026thinsp;50\u003c/p\u003e \u003cp\u003e\u003cem\u003eStigma, misconceptions and fear about breast cancer\u003c/em\u003e\u003c/p\u003e \u003cp\u003eConcerning my treatment process, I still feel ashamed because I have not accepted my condition yet. To tell you the truth, I am ashamed of having only one breast. Look at the layers of clothes I am wearing, even on a sunny day. I am worried that someone could notice that I have only one breast. It is still too much for me to bear. I have not accepted it yet. - Diagnosed with cancer, age 30\u0026ndash;50\u003c/p\u003e \u003cp\u003e\u0026hellip;I was wondering what would happen to my mother [when I was referred to the hospital] since no one else was ready to care for her due to the stigma we were facing in our household. [\u0026hellip;]I was already suffering from stigma of caring for a mother who had cancer. They were saying that I had got cancer from my mother because they thought that cancer is an infectious disease. - Diagnosed with cancer, age 30\u0026ndash;50\u003c/p\u003e \u003cp\u003e[The doctor] told me: \u0026ldquo; You are ill, you will start taking medicines.\u0026rdquo; He gave me a lot of examples. He told me: \u0026ldquo;My mother died of that cancer when she was your age. At that time, the country was underdeveloped, with no medicines. But now you are lucky, we have medicines. Why are going home?\u0026rdquo; I replied: \u0026ldquo;You are right doctor, let me interiorize it.\u0026rdquo; I had problems. When I got home, a long time passed by, I did not respect the promise to come after a week. I went and kept quiet at home. \u0026ndash; Diagnosed with cancer, age\u0026thinsp;\u0026gt;\u0026thinsp;50\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e\u003cem\u003eFacilitators\u003c/em\u003e. Participants diagnosed with cancer often felt optimistic about their treatment because of the perceived expertise at Butaro. One participant explained \u0026ldquo;Going to Butaro alleviated my worries.\u0026rdquo; Meeting other patients with breast cancer at Butaro was especially comforting: one participant noted that \u0026ldquo;It has even made me be strong and accept myself\u0026rdquo; and another described the \u0026ldquo;courage and perseverance\u0026rdquo; other patients gave her. Some participants received emotional support from family and community members.\u003c/p\u003e \u003cp\u003e \u003cem\u003eBarriers.\u003c/em\u003e Participants also expressed fear and confusion around treatment, particularly mastectomy, largely due to prior misconceptions and uncertainty about treatment pans. One participant explained: \u0026ldquo;I got information from a woman who told me\u0026hellip;\u0026lsquo;Not being operated is better because you continue to be ill, but you survive for many years. You don\u0026rsquo;t die immediately\u0026hellip;.But when a scalpel has penetrated inside your breast, you die immediately.\u0026rsquo;\u0026rdquo;\u003c/p\u003e \u003cp\u003eCosts associated with treatment were stressful. One participant who had to sell her farm to afford transport for treatment explained \u0026ldquo;\u0026hellip;if I were able to get money\u0026hellip;I would have started the treatment when it was not yet complicated.\u0026rdquo; Other costs such as insurance premiums and loss of work contributed to financial burdens.\u003c/p\u003e \u003cp\u003eWhile some patients gained strength from their families and communities, others described feeling abandoned and struggled to educate those who believed cancer to be incurable or contagious. One participant described, \u0026ldquo;The most challenging thing for me is the stigma I am suffering from for having this disease\u0026hellip;my family has never assisted me during my treatment, for example by providing me with fare. I am therefore obliged to beg neighbors to help me, and I take anything I get.\u0026rdquo;\u003c/p\u003e \u003cp\u003eCOVID-19 pandemic-related delays hindered treatment initiation for some. One participant described long delays in treatment initiation and, once the lockdown order was lifted, her struggles continued because her referral had expired and she needed to obtain a new one. Another participant described the moment her doctor told her that her cancer had metastasized and the lockdown had \u0026ldquo;deteriorated\u0026rdquo; her case.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eExperience of a false-positive CBE\u003c/h2\u003e \u003cp\u003eWhile some participants with false-positive CBE experienced joy and relief upon learning they did not have cancer, others were confused or skeptical, having been convinced that they had cancer, and wanted more clarity. One participant described being \u0026ldquo;certain\u0026rdquo; she had breast cancer and explained she \u0026ldquo;did not believe [clinicians\u0026rsquo;] words\u0026hellip;.that nothing was wrong with my breast.\u0026rdquo; However, while false positives financially and emotionally burdened patients by incurring cancer-related anxiety and the stress of referrals, most participants felt the experience demonstrated the importance of monitoring their breast health and were already advocating for breast health in their communities. One noted \u0026ldquo;if I happen to develop the same condition I will attend a health center or hospital at once\u0026hellip;.[After my experience] I strongly deterred [friends and family from traditional healers] and advised them to attend a health center or a hospital because doctors and other\u0026hellip;staff are able to identify the problem with their breast\u0026hellip;.myself I have had that experience; now I am better.\u0026rdquo;\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eInterviews with patients undergoing breast evaluation through Rwanda\u0026rsquo;s WCEDP illuminate barriers and facilitators that patients encounter during assessment for breast cancer and suggest opportunities for designing patient-centered programs that will be acceptable, feasible, and ultimately effective in facilitating timely cancer diagnoses and treatment initiation. Although our study only included Rwandan women, many factors contributing to late-stage diagnoses (including diagnostic delays, poverty, and stigma) are common across LMIC settings. Further, our study addresses an important gap in the literature; a recent systematic review of factors influencing women\u0026rsquo;s experiences of breast and cervical cancer screenings in LMICs included just one study on the experiences of women undergoing breast cancer screening.[\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e] Thus, we believe that, in addition to informing the WCEDP, our findings have value for guiding development and evaluation of breast cancer early detection programs in other resource-constrained settings[\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e27\u003c/span\u003e] and can inform global efforts such as the WHO Global Breast Cancer Initiative.[\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e28\u003c/span\u003e]\u003c/p\u003e \u003cp\u003eParticipants identified facilitators of initial breast evaluation which suggest opportunities to strengthen the WCEDP and other early detection programs. Patients received both beneficial and harmful information from community members, suggesting the importance of leveraging community networks, including cancer survivors, to disseminate accurate messages about cancer detection. Lay media and messaging by health workers were also impactful. Notably, patients interviewed in these WCEDP districts demonstrated strong understanding of and belief in the value of breast cancer early detection, in contrast to a mixed-methods study of Rwandan women in other districts that found that cancer prevention and screening remained a low priority.[\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e29\u003c/span\u003e] Trusting relationships with clinicians, perceived high-quality care, and thorough communication increased patients\u0026rsquo; own engagement as well as their desire to engage others in care,[\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e30\u003c/span\u003e] and this should be emphasized in clinician education.[\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e] Participants valued the willingness of some clinicians to help them navigate the health care system, underscoring the potential role of professional or peer navigators. For patients diagnosed with cancer, support and education from other patients was critical, and this could also be leveraged in peer support programs.[\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e31\u003c/span\u003e]\u003c/p\u003e \u003cp\u003ePatients faced several barriers to timely diagnosis, highlighting gaps in the current program. Out-of-pocket direct and indirect costs were substantial, particularly for those who required hospital referral. All interviewed patients had Rwanda\u0026rsquo;s community-based health insurance, and described travel costs that were consistently higher than medical expenditures; this finding is consistent with other studies showing that non-medical costs pose barriers to care in LMICs even when medical costs are minimized.[\u003cspan additionalcitationids=\"CR33\" citationid=\"CR33\" class=\"CitationRef\"\u003e32\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e34\u003c/span\u003e] Average monthly income in rural areas of Rwanda is about \u003cspan\u003e$\u003c/span\u003e27 USD; for farmers it is about \u003cspan\u003e$\u003c/span\u003e19 USD.[\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e35\u003c/span\u003e] Repeated hospital visits consumed a significant portion of that income. The time associated with travel to and wait times at referral facilities demonstrates the indirect costs (i.e., time off from working) of the diagnostic pathway. Though financial support is available at Butaro Hospital for the lowest-income patients, burdensome administrative requirements for demonstrating eligibility often introduced further delays. Efforts to decentralize diagnostic services, enhance the efficiency of diagnostic workflows at all levels of care, and provide expanded financial support and navigation to patients could alleviate some of this burden.\u003c/p\u003e \u003cp\u003eIn addition, breast cancer-related stigma led to delays in care-seeking, stress associated with referrals, and substantial emotional distress\u0026mdash;and isolation\u0026mdash;following cancer diagnoses. Other work has highlighted how breast cancer stigma including concerns about mastectomy is mediated by gender identity and women\u0026rsquo;s reproductive roles.[\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e36\u003c/span\u003e] In Rwanda, domestic responsibilities fall largely upon women, and these considerations impacted participants\u0026rsquo; decisions about care.[\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e37\u003c/span\u003e, \u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e38\u003c/span\u003e] Thus, gender-informed strategies to address stigma, engage caregivers, and support patients through breast evaluation, cancer diagnosis, and treatment, are critical components of early detection programs.\u003c/p\u003e \u003cp\u003eAs breast cancer early detection initiatives expand in Rwanda and other LMIC, a growing number of women will have false positive CBE findings. For example, in the RCT of the pilot early diagnosis intervention, the number of abnormal CBEs requiring further evaluation at the hospital level was much higher in intervention areas compared to control areas, and the rate of benign breast diagnoses was almost 6 times higher.[\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e39\u003c/span\u003e] The current study suggests important downsides of false positive evaluations. For example, women who experienced a false positive CBE incurred the financial and psychosocial burdens of breast evaluation unnecessarily. However, women with false positive evaluations seemed to derive educational benefit and empowerment from the experience, were engaged in educating their communities about breast cancer early detection, and were interested in receiving breast cancer screening themselves in the future. Although this echoes the findings of some United States studies,[\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e40\u003c/span\u003e] it contrasts with other studies in high-income countries that suggest false-positive mammograms may limit women\u0026rsquo;s engagement in future screening, for example by reducing trust in the test.[\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e41\u003c/span\u003e] More research is needed to understand the impact of false positive CBE for individuals in sub-Saharan Africa, since this may have important implications for the effectiveness and relative benefits and harms of screening.\u003c/p\u003e \u003cp\u003eOur study has limitations. First, the costs described by participants do not reflect all costs associated with breast diagnostic services. However, they provide important preliminary information about indirect and direct costs associated with breast evaluation in Rwanda and have informed development of a patient survey. Second, social desirability bias could have altered patients\u0026rsquo; responses to interview questions and limited their willingness to discuss barriers to care, particularly since the interviewer was an employee of Partners In Health, an organization supporting the WCEDP. This bias may explain why themes such as distrust in the healthcare system and poor provider-patient communication, which are barriers in other studies,[\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e29\u003c/span\u003e, \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e30\u003c/span\u003e, \u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e42\u003c/span\u003e] did not arise as major themes in our analysis.\u003c/p\u003e"},{"header":"Conclusions","content":"\u003cp\u003eThis study illuminates patients\u0026rsquo; perspectives on a breast cancer early detection initiative in Rwanda. Although patients faced barriers to breast health services (including stigma and cost), they also described benefits. The experience of a false positive result did not diminish individuals\u0026rsquo; willingness to engage in breast cancer early detection services in the future, or their interest in encouraging their communities to do so. Our findings can inform national and global efforts to provide patient-centered breast health care and timely cancer diagnoses.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eFunding:\u003c/strong\u003e This work was funded by the Breast Cancer Research Foundation, Grant # BCRF-20-149. Dr. Pace additionally is supported by 1K07CA215819-01A1.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests:\u0026nbsp;\u003c/strong\u003eThe authors have no relevant financial or non-financial interests to disclose.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor contributions:\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eLydia E. Pace, MD, MPH: Concept and design, provision of study materials, data assembly, data analysis, manuscript writing, final approval of manuscript\u003c/p\u003e\n\u003cp\u003eAmanda Fata, BA: Data analysis, manuscript writing, final approval of manuscript\u003c/p\u003e\n\u003cp\u003eVincent K. Cubaka, MD, Mmed, PhD: Conception/ design, data interpretation, final approval of manuscript\u003c/p\u003e\n\u003cp\u003eTheophile Nsemgiyumva, BSPH: Collection and/or assembly of data, final approval of manuscript\u003c/p\u003e\n\u003cp\u003eJean de Dieu Uwihaye, AdvDip: Data analysis and interpretation, final approval of manuscript\u003c/p\u003e\n\u003cp\u003eCatherine Stauber, BA: Collection and/or assembly of data, final approval of manuscript\u003c/p\u003e\n\u003cp\u003eJean-Marie Vianney Dusengimana, MPH: Provision of study materials and patients, collection and assembly of data, final approval of manuscript\u003c/p\u003e\n\u003cp\u003eKayleigh Bhangdia, MPH: Conception/ design, final approval of manuscript\u003c/p\u003e\n\u003cp\u003eLawrence N. Shulman, MD: Final approval of manuscript\u003c/p\u003e\n\u003cp\u003eAnna Revette, PhD: Conception/ design, data interpretation, final approval of manuscript\u003c/p\u003e\n\u003cp\u003eMarc Hagenimana, BSN, MPH: Provision of study material or patients, final approval of manuscript\u003c/p\u003e\n\u003cp\u003eFrancois Uwinkindi, MD: Provision of study material or patients, final approval of manuscript\u003c/p\u003e\n\u003cp\u003eEnock Rwamuza, MGHD: Conception/design, provision of study materials, data collection and assembly, data analysis and interpretation, final approval of manuscript\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData availability:\u0026nbsp;\u003c/strong\u003eThe data analyzed during the current study are not publicly available, but are available from the corresponding author upon reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval:\u0026nbsp;\u003c/strong\u003eThis study was approved by the Rwanda National Ethics Committee and the Mass General Brigham Institutional Review Board.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent to participate:\u0026nbsp;\u003c/strong\u003eAll interview participants gave verbal consent.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent to publish:\u0026nbsp;\u003c/strong\u003eN/A\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eSung H, Ferlay J, Siegel RL, et al. 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The Economic Burden Attributable to a Child\u0026apos;s Inpatient Admission for Diarrheal Disease in Rwanda. \u003cem\u003ePloS one\u003c/em\u003e. 2016;11(2):e0149805. doi:10.1371/journal.pone.0149805\u003c/li\u003e\n\u003cli\u003eNiyigena A, Alayande B, Bikorimana L, et al. The true costs of cesarean delivery for patients in rural Rwanda: Accounting for post-discharge expenses in estimated health expenditures. \u003cem\u003eInt J Equity Health\u003c/em\u003e. May 8 2022;21(1):62. doi:10.1186/s12939-022-01664-x\u003c/li\u003e\n\u003cli\u003eNational Institute of Statistics of Rwanda. Integrated Household Living Conditions Survey 5 (EICV 5). National Institute of Statistics of Rwanda Rwanda; 2018.\u003c/li\u003e\n\u003cli\u003eMartei YM, Vanderpuye V, Jones BA. 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Cluster Randomized Trial to Facilitate Breast Cancer Early Diagnosis in a Rural District of Rwanda. \u003cem\u003eJournal of global oncology\u003c/em\u003e. 2019;5(5):1-13. doi:10.1200/JGO.19.00209\u003c/li\u003e\n\u003cli\u003eSystematic Review: The Long-Term Effects of False-Positive Mammograms. \u003cem\u003eAnnals of Internal Medicine\u003c/em\u003e. 2007;146(7):502-510. doi:10.7326/0003-4819-146-7-200704030-00006 %m 17404352\u003c/li\u003e\n\u003cli\u003eDeFrank JT, Rimer BK, Bowling JM, Earp JA, Breslau ES, Brewer NT. Influence of false-positive mammography results on subsequent screening: do physician recommendations buffer negative effects? \u003cem\u003eJournal of Medical Screening\u003c/em\u003e. 2012;19(1):35-41. doi:10.1258/jms.2012.011123\u003c/li\u003e\n\u003cli\u003eCubaka VK, Schriver M, Cotton P, Nyirazinyoye L, Kallestrup P. Providers\u0026rsquo; perceptions of communication with patients in primary healthcare in Rwanda. \u003cem\u003ePloS one\u003c/em\u003e. Apr 2018 2020-01-03 2018;13(4)doi:https://doi.org/10.1371/journal.pone.0195269\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"breast-cancer-research-and-treatment","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"brea","sideBox":"Learn more about [Breast Cancer Research and Treatment](https://www.springer.com/journal/10549)","snPcode":"10549","submissionUrl":"https://submission.nature.com/new-submission/10549/3","title":"Breast Cancer Research and Treatment","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"","lastPublishedDoi":"10.21203/rs.3.rs-3043983/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-3043983/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003ePurpose\u003c/h2\u003e \u003cp\u003eThere is urgent need for interventions to facilitate earlier diagnosis of breast cancer in low- and middle-income countries where mammography screening is not widely available. Understanding patients\u0026rsquo; experiences with early detection efforts, whether they are ultimately diagnosed with cancer or benign disease, is critical to optimize interventions and maximize community engagement. We sought to understand the experiences of patients undergoing breast evaluation in Rwanda\u0026rsquo;s Women\u0026rsquo;s Cancer Early Detection Program (WCEDP).\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eWe conducted in-person semi-structured interviews with 30 patients in two districts of Rwanda participating in the WCEDP. Patients represented a range of ages and both benign and malignant diagnoses. Interviews were recorded, transcribed, translated, and thematically analyzed.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eParticipants identified facilitators and barriers of timely care along the breast evaluation pathway. Community awareness initiatives were facilitators to care-seeking, while persistent myths and stigma about cancer were barriers. Participants valued clear clinician-patient communication and emotional support from clinicians and peers. Poverty was a major barrier for participants who described difficulty paying for transport, insurance premiums, and other direct and indirect costs of hospital referrals in particular. COVID-19 lockdowns caused delays for referred patients. Although false-positive clinical breast exams conferred financial and emotional burdens, participants nonetheless voiced appreciation for their experience and felt empowered to monitor their own breast health and share knowledge with others.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003eRwandan women experienced both benefits and burdens as they underwent breast evaluation. Enthusiasm for participation was not reduced by the experience of a false positive result. Reducing financial, logistical and emotional burdens of the breast diagnostic pathway through patient navigation, peer support and decentralization of diagnostic services could improve patients\u0026rsquo; experience.\u003c/p\u003e","manuscriptTitle":"Patients’ experiences undergoing breast evaluation in Rwanda’s Women’s Cancer Early Detection Program","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2023-06-29 15:09:39","doi":"10.21203/rs.3.rs-3043983/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Minor Revisions Needed","date":"2023-07-13T12:31:54+00:00","index":"","fulltext":""},{"type":"reviewerAgreed","content":"","date":"2023-06-28T14:11:46+00:00","index":0,"fulltext":""},{"type":"reviewersInvited","content":"","date":"2023-06-25T21:24:11+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2023-06-12T14:35:04+00:00","index":"","fulltext":""},{"type":"submitted","content":"Breast Cancer Research and Treatment","date":"2023-06-12T10:17:22+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"breast-cancer-research-and-treatment","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"brea","sideBox":"Learn more about [Breast Cancer Research and Treatment](https://www.springer.com/journal/10549)","snPcode":"10549","submissionUrl":"https://submission.nature.com/new-submission/10549/3","title":"Breast Cancer Research and Treatment","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"79731942-f73a-4e99-8a54-5f8f3649eafd","owner":[],"postedDate":"June 29th, 2023","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2023-09-07T15:11:01+00:00","versionOfRecord":{"articleIdentity":"rs-3043983","link":"https://doi.org/10.1007/s10549-023-07076-x","journal":{"identity":"breast-cancer-research-and-treatment","isVorOnly":false,"title":"Breast Cancer Research and Treatment"},"publishedOn":"2023-08-30 15:08:34","publishedOnDateReadable":"August 30th, 2023"},"versionCreatedAt":"2023-06-29 15:09:39","video":"","vorDoi":"10.1007/s10549-023-07076-x","vorDoiUrl":"https://doi.org/10.1007/s10549-023-07076-x","workflowStages":[]},"version":"v1","identity":"rs-3043983","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-3043983","identity":"rs-3043983","version":["v1"]},"buildId":"_2-kVJe1T_tPrBINL-cwx","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}