Lessons From the Design and Rollout of an Electronic Medical Record System for Cervical Cancer Screening in Rwanda.

BACKGROUND: In its commitment to delivering comprehensive women's cancer early detection services, the Rwanda Ministry of Health rolled out a new cervical cancer screening program. The paper-based medical record system that tracked clients at different points in the continuum of cervical cancer care had challenges with storing data, accessing client information for follow-up visits, and fragmenting information on individual clients. To support the rollout of the new cervical cancer screening program, a new electronic medical record system was designed and implemented to ensure clients were followed along the complete continuum of care. We document the development and implementation of the electronic medical record system and highlight challenges and lessons learned during implementation. METHODS: Implementation took a participatory approach to ensure that the electronic medical record system was efficient in tracking clients along the continuum of care. At every stage, a wide range of stakeholders were engaged, including clinicians, program managers, and software developers. Health facility visits and conversations were conducted with health care providers and data managers to review the existing system and ensure that the design and development of the electronic record system were suitable for the context in which it would be used. RESULTS: Cervical cancer screening sites are currently using the electronic medical record system to document client information and track women along the continuum of care to reduce loss to follow-up. The system has been rolled out to all newly activated screening sites as part of national scale-up. CONCLUSION: Planning, collaboration, and adaptability were the key factors in this system's successful rollout and should be the foundation of future data systems development.

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

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.

Implementation research: including breast examinations in a cervical cancer screening programme, Rwanda.

Objective: To evaluate whether integrating breast and cervical cancer screening in Rwanda's Women's Cancer Early Detection Program led to early breast cancer diagnoses in asymptomatic women. Methods: Launched in three districts in 2018-2019, the early detection programme offered clinical breast examination screening for all women receiving cervical cancer screening, and diagnostic breast examination for women with breast cancer symptoms. Women with abnormal breast examinations were referred to district hospitals and then to referral hospitals if needed. We examined how often clinics were held, patient volumes and number of referrals. We also examined intervals between referrals and visits to the next care level and, among women diagnosed with cancer, their initial reasons for seeking care. Findings: Health centres held clinics > 68% of the weeks. Overall, 9763 women received cervical cancer screening and clinical breast examination and 7616 received breast examination alone. Of 585 women referred from health centres, 436 (74.5%) visited the district hospital after a median of 9 days (interquartile range, IQR: 3-19). Of 200 women referred to referral hospitals, 179 (89.5%) attended after a median of 11 days (IQR: 4-18). Of 29 women diagnosed with breast cancer, 19 were ≥ 50 years and 23 had stage III or stage IV disease. All women with breast cancer whose reasons for seeking care were known (23 women) had experienced breast cancer symptoms. Conclusion: In the short-term, integrating clinical breast examination with cervical cancer screening was not associated with detection of early-stage breast cancer among asymptomatic women. Priority should be given to encouraging women to seek timely care for symptoms.

Clinical Diagnoses and Outcomes After Diagnostic Breast Ultrasound by Nurses and General Practitioner Physicians in Rural Rwanda.

PURPOSE: To scale up early detection of breast cancer in low- and middle-income countries, research is needed to inform the role of diagnostic breast ultrasound performed by nonradiologists in resource-constrained settings. The authors examined 2-year clinical follow-up and outcomes among women who underwent diagnostic breast ultrasound performed by nonradiologist clinicians participating in a breast ultrasound training and mentorship program at a rural Rwandan hospital. METHODS: Imaging findings, management plans, and pathologic results were prospectively collected during the training using a standardized form. Data on follow-up and outcomes for patients receiving breast ultrasound between January 2016 and March 2017 were retrospectively collected through medical record review. RESULTS: Two hundred twenty-nine breast palpable findings (199 patients) met the study's eligibility criteria. Of 104 lesions initially biopsied, 38 were malignant on initial biopsy; 3 lesions were identified as malignant on repeat biopsy. All 34 patients ultimately diagnosed with cancer received initial recommendations for either biopsy or aspiration by trainees. The positive predictive value of trainee biopsy recommendation was 34.8% (95% confidence interval, 24.8%-45.0%). The sensitivity of trainees' biopsy recommendation for identifying malignant lesions was 92.7% (95% confidence interval, 84.2%-100%). Of 46 patients who did not receive biopsy and were told to return for clinical or imaging follow-up, 37.0% did not return. CONCLUSIONS: Trained nonradiologist clinicians in Rwanda successfully identified suspicious breast lesions on diagnostic breast ultrasound. Loss to follow-up was common among patients instructed to return for surveillance, so lower biopsy thresholds, decentralized surveillance, or patient navigation should be considered for patients with low- or intermediate-suspicion lesions.

Health system costs of a breast cancer early diagnosis programme in a rural district of Rwanda: a retrospective, cross-sectional economic analysis.

OBJECTIVES: This study aimed to quantify the health system cost of the first 2 years of a Breast Cancer Early Detection (BCED) programme in a rural district in Rwanda. We also aimed to estimate the cost of implementing the programme in other districts with different referral pathways and identify opportunities for enhanced cost efficiency. DESIGN: Retrospective, cross-sectional analysis using time-driven activity-based costing, based on timed patient clinical encounters, retrospective patient data and unit costs of resources abstracted from administrative and finance records. SETTING: The BCED programme focused on timely evaluation of individuals with breast symptoms. The study evaluated the health system cost of the BCED programme at seven health centres (HCs) in Burera district and Butaro Cancer Centre of Excellence (BCCOE) at Butaro District Hospital. OUTCOME MEASURES: Health system costs per patient visit and cost per cancer diagnosed were quantified. Total start-up and recurring operational costs were also estimated, as well as health system costs of different scale-up adaptations in other districts. RESULTS: One-time start-up costswere US$36 917, recurring operational costswere US$67 711 and clinical costswere US$14 824 over 2 years. Clinical breast examinations (CBE) at HCs cost US$3.27/visit. At BCCOE, CBE-only visits cost US$13.47/visit, CBE/ultrasound US$14.79/visit and CBE/ultrasound/biopsy/pathology US$147.81/visit. Overall, clinical cost per breast cancer diagnosed was US$1482. Clinicalcost drivers were personnel at HCs (55%) and biopsy/pathology supplies at BCCOE (46%). In other districts, patients experience a longer breast evaluation pathway, adding about US$14.00/patient; this could be decreased if ultrasound services were decentralised. CONCLUSION: Clinical costs associated with BCED services at HCs were modest, similar to other general outpatient services. The BCED programme's start-up and operational costs were high but could be reduced by using local trainers and virtual mentorship. In other districts, decentralising ultrasound and/or biopsies to district hospitals could reduce costs.

Barriers and coping mechanisms to accessing healthcare during the COVID-19 lockdown: a cross-sectional survey among patients with chronic diseases in rural Rwanda.

BACKGROUND: Large scale physical distancing measures and movement restrictions imposed to contain COVID-19, often referred to as 'lockdowns', abruptly and ubiquitously restricted access to routine healthcare services. This study describes reported barriers and coping mechanisms to accessing healthcare among chronic care patients during the nationwide COVID-19 lockdown in Rwanda. METHODS: This cross-sectional study was conducted among chronic care patients enrolled in pediatric development, HIV/AIDS, non-communicable diseases, mental health, and oncology programs at 3 rural Rwandan districts. Active patients with an appointment scheduled between March-June 2020 and a phone number recorded in the electronic medical record system were eligible. Data were collected by telephone interviews between 23rd April and 11th May 2020, with proxy reporting by caregivers for children and critically ill-patients. Fisher's exact tests were used to measure associations. Logistic regression analysis was also used to assess factors associated with reporting at least one barrier to accessing healthcare during the lockdown. RESULTS: Of 220 patient respondents, 44% reported at least one barrier to accessing healthcare. Barriers included lack of access to emergency care (n = 50; 22.7%), lack of access to medication (n = 44; 20.0%) and skipping clinical appointments (n = 37; 16.8%). Experiencing barriers was associated with the clinical program (p < 0.001), with oncology patients being highly affected (64.5%), and with increasing distance from home to the health facility (p = 0.031). In the adjusted logistic regression model, reporting at least one barrier to accessing healthcare was associated with the patient's clinical program and district of residence. Forty (18.2%) patients identified positive coping mechanisms to ensure continuation of care, such as walking long distances during suspension of public transport (n = 21; 9.6%), contacting clinicians via telephone for guidance or rescheduling appointments (n = 15; 6.8%), and delegating someone else for medication pick-up (n = 6; 2.7%). Of 124 patients who reported no barriers to accessing healthcare, 9% used positive coping mechanisms. CONCLUSION: A large proportion of chronic care patients experienced barriers to accessing healthcare during the COVID-19 lockdown. However, many patients also independently identified positive coping mechanisms to ensure continuation of care - strategies that could be formally adopted by healthcare systems in Rwanda and similar settings to mitigate effects of future lockdowns on patients.

Training Nonradiologist Clinicians in Diagnostic Breast Ultrasound in Rural Rwanda: Impact on Knowledge and Skills.

OBJECTIVE: To assess the effectiveness of diagnostic breast ultrasound training provided for general practitioners and nurses in Rwanda via intensive in-person and subsequent online supervision and mentorship. METHODS: Four breast radiologists from Brigham and Women's Hospital trained two general practitioner physicians and five nurses in Rwanda over 9 total weeks of in-person training and 20 months of remote mentorship using electronic image review with emailed feedback. Independently recorded assessments were compared to calculate the sensitivity and specificity of trainee assessments, with radiologist assessments as the gold standard. We compared performance in the first versus second half of the training. RESULTS: Trainees' performance on written knowledge assessments improved after training (57.7% versus 98.1% correct, P = .03). Mean sensitivity of trainee-performed ultrasound for identifying a solid breast mass was 90.6% (SD 4.2%) in the first half of the training (period 1) and 94.0% (SD 6.7%) in period 2 (P = .32). Mean specificity was 94.7% (SD 5.4%) in period 1 and 100.0% (SD 0) in period 2 (P = .10). Mean sensitivity for identifying a medium- or high-suspicion solid mass increased from 79.2% (SD 11.0%) in period 1 to 96.3% (SD 6.4%) in period 2 (P = .03). Specificity was 84.4% (SD 15.0%) in period 1 and 96.7% (SD 5.8%) in period 2 (P = .31). DISCUSSION: Nonradiologist clinicians (doctors and nurses) in a rural sub-Saharan African hospital built strong skills in diagnostic breast ultrasound over 23 months of combined in-person training and remote mentorship. The sensitivity of trainees' assessments in identifying masses concerning for malignancy improved after sustained mentorship. Assessment of impact on patient care and outcomes is ongoing.

Identifying Breast Cancer Care Quality Measures for a Cancer Facility in Rural Sub-Saharan Africa: Results of a Systematic Literature Review and Modified Delphi Process.

PURPOSE: The burden of cancer is growing in low- and middle-income countries (LMICs), including sub-Saharan Africa. Ensuring the delivery of high-quality cancer care in such regions is a pressing concern. There is a need for strategies to identify meaningful and relevant quality measures that are applicable to and usable for quality measurement and improvement in resource-constrained settings. METHODS: To identify quality measures for breast cancer care at Butaro Cancer Center of Excellence (BCCOE) in Rwanda, we used a modified Delphi process engaging two panels of experts, one with expertise in breast cancer evidence and measures used in high-income countries and one with expertise in cancer care delivery in Rwanda. RESULTS: Our systematic review of the literature yielded no publications describing breast cancer quality measures developed in a low-income country, but it did provide 40 quality measures, which we adapted for relevance to our setting. After two surveys, one conference call, and one in-person meeting, 17 measures were identified as relevant to pathology, staging and treatment planning, surgery, chemotherapy, endocrine therapy, palliative care, and retention in care. Successes of the process included participation by a diverse set of global experts and engagement of the BCCOE community in quality measurement and improvement. Anticipated challenges include the need to continually refine these measures as resources, protocols, and measurement capacity rapidly evolve in Rwanda. CONCLUSION: A modified Delphi process engaging both global and local expertise was a promising strategy to identify quality measures for breast cancer in Rwanda. The process and resulting measures may also be relevant for other LMIC cancer facilities. Next steps include validation of these measures in a retrospective cohort of patients with breast cancer.

Cluster Randomized Trial to Facilitate Breast Cancer Early Diagnosis in a Rural District of Rwanda.

PURPOSE: Feasible and effective strategies are needed to facilitate earlier diagnosis of breast cancer in low-income countries. The goal of this study was to examine the impact of health worker breast health training on health care utilization, patient diagnoses, and cancer stage in a rural Rwandan district. METHODS: We conducted a cluster randomized trial of a training intervention at 12 of the 19 health centers (HCs) in Burera District, Rwanda, in 2 phases. We evaluated the trainings' impact on the volume of patient visits for breast concerns using difference-in-difference models. We used generalized estimating equations to evaluate incidence of HC and hospital visits for breast concerns, biopsies, benign breast diagnoses, breast cancer, and early-stage disease in catchment areas served by intervention versus control HCs. RESULTS: From April 2015 to April 2017, 1,484 patients visited intervention HCs, and 308 visited control HCs for breast concerns. The intervention led to an increase of 4.7 visits/month for phase 1 HCs (P = .001) and 7.9 visits/month for phase 2 HCs (P = .007) compared with control HCs. The population served by intervention HCs had more hospital visits (115.1 v 20.5/100,000 person-years, P < .001) and biopsies (36.6 v 8.9/100,000 person-years, P < .001) and higher breast cancer incidence (6.9 v 3.3/100,000 person-years; P = .28). The incidence of early-stage breast cancer was 3.3 per 100,000 in intervention areas and 0.7 per 100,000 in control areas (P = .048). CONCLUSION: In this cluster randomized trial in rural Rwanda, the training of health workers and establishment of regular breast clinics were associated with increased numbers of patients who presented with breast concerns at health facilities, more breast biopsies, and a higher incidence of benign breast diagnoses and early-stage breast cancers.

Impact of Breast Cancer Early Detection Training on Rwandan Health Workers' Knowledge and Skills.

PURPOSE: In April 2015, we initiated a training program to facilitate earlier diagnosis of breast cancer among women with breast symptoms in rural Rwanda. The goal of this study was to assess the impact of the training intervention in breast cancer detection on knowledge and skills among health center nurses and community health workers (CHWs). METHODS: We assessed nurses' and CHWs' knowledge about breast cancer risk factors, signs and symptoms, and treatability through a written test administered immediately before, immediately after, and 3 months after trainings. We assessed nurses' skills in clinical breast examination immediately before and after trainings and then during ongoing mentorship by a nurse midwife. We also examined the appropriateness of referrals made to the hospital by health center nurses. RESULTS: Nurses' and CHWs' written test scores improved substantially after the trainings (overall percentage correct increased from 73.9% to 91.3% among nurses and from 75.0% to 93.8% among CHWs ( P < .001 for both), and this improvement was sustained 3 months after the trainings. On checklists that assessed skills, nurses' median percentage of actions performed correctly was 24% before the training. Nurses' skills improved significantly after the training and were maintained during the mentorship period (the median score was 88% after training and during mentorship; P < .001). In total, 96.1% of patients seen for breast concerns at the project's hospital-based clinic were deemed to have been appropriately referred. CONCLUSION: Nurses and CHWs demonstrated substantially improved knowledge about breast cancer and skills in evaluating and managing breast concerns after brief trainings. With adequate training, mentorship, and established care delivery and referral systems, primary health care providers in sub-Saharan Africa can play a critical role in earlier detection of breast cancer.

Pregnancy-associated breast cancer in rural Rwanda: the experience of the Butaro Cancer Center of Excellence.

BACKGROUND: Breast cancer is the most common malignancy encountered during pregnancy. However, the burden of pregnancy-associated breast cancer (PABC) and subsequent care is understudied in sub-Saharan Africa (SSA). Here, we describe the characteristics, diagnostic delays and treatment of women with PABC seeking care at a rural cancer referral facility in Rwanda. METHODS: Data from female patients aged 18-50 years with pathologically confirmed breast cancer who presented for treatment between July 1, 2012 and February 28, 2014 were retrospectively reviewed. PABC was defined as breast cancer diagnosed in a woman who was pregnant or breastfeeding. Numbers and frequencies are reported for demographic and diagnostic delay variables and Wilcoxon rank sum and Fisher's exact tests are used to compare characteristics of women with PABC to women with non-PABC at the alpha = 0.05 significance level. Treatment and outcomes are described for women with PABC only. RESULTS: Of the 117 women with breast cancer, 12 (10.3%) had PABC based on medical record review. The only significant demographic differences were that women with PABC were younger (p = 0.006) and more likely to be married (p = 0.035) compared to women with non-PABC. There were no significant differences in diagnostic delays or stage at diagnosis between women with PABC and women with non-PABC women. Eleven of the women with PABC received treatment, three had documented treatment delays or modifications due to their pregnancy or breastfeeding, and four stopped breastfeeding to initiate treatment. At the end of the study period, six patients were alive, three were deceased and three patients were lost to follow-up. CONCLUSIONS: PABC was relatively common in our cohort but may have been underreported. Although patients with PABC did not experience greater diagnostic delays, most had treatment modifications, emphasizing the potential value of PABC-specific treatment protocols in SSA. Larger prospective studies of PABC are needed to better understand particular challenges faced by these patients and inform policies and practices to optimize care for women with PABC in Rwanda and similar settings.

Delays in Breast Cancer Presentation and Diagnosis at Two Rural Cancer Referral Centers in Rwanda.

BACKGROUND: Breast cancer incidence is increasing in low- and middle-income countries (LMICs). Mortality/incidence ratios in LMICs are higher than in high-income countries, likely at least in part because of delayed diagnoses leading to advanced-stage presentations. In the present study, we investigated the magnitude, impact of, and risk factors for, patient and system delays in breast cancer diagnosis in Rwanda. MATERIALS AND METHODS: We interviewed patients with breast complaints at two rural Rwandan hospitals providing cancer care and reviewed their medical records to determine the diagnosis, diagnosis date, and breast cancer stage. RESULTS: A total of 144 patients were included in our analysis. Median total delay was 15 months, and median patient and system delays were both 5 months. In multivariate analyses, patient and system delays of ≥6 months were significantly associated with more advanced-stage disease. Adjusting for other social, demographic, and clinical characteristics, a low level of education and seeing a traditional healer first were significantly associated with a longer patient delay. Having made ≥5 health facility visits before the diagnosis was significantly associated with a longer system delay. However, being from the same district as one of the two hospitals was associated with a decreased likelihood of system delay. CONCLUSION: Patients with breast cancer in Rwanda experience long patient and system delays before diagnosis; these delays increase the likelihood of more advanced-stage presentations. Educating communities and healthcare providers about breast cancer and facilitating expedited referrals could potentially reduce delays and hence mortality from breast cancer in Rwanda and similar settings. IMPLICATIONS FOR PRACTICE: Breast cancer rates are increasing in low- and middle-income countries, and case fatality rates are high, in part because of delayed diagnosis and treatment. This study examined the delays experienced by patients with breast cancer at two rural Rwandan cancer facilities. Both patient delays (the interval between symptom development and the patient's first presentation to a healthcare provider) and system delays (the interval between the first presentation and diagnosis) were long. The total delays were the longest reported in published studies. Longer delays were associated with more advanced-stage disease. These findings suggest that an opportunity exists to reduce breast cancer mortality in Rwanda by addressing barriers in the community and healthcare system to promote earlier detection.