Capacity building for cancer prevention and early detection in the Ugandan primary healthcare facilities: Working toward reducing the unmet needs of cancer control services.

BACKGROUND: In 2018, approximately 60,000 Ugandans were estimated to be suffering from cancer. It was also reported that only 5% of cancer patients access cancer care and 77% present with late-stage cancer coupled with low level of cancer health literacy in the population despite a wide coverage of primary healthcare facilities in Uganda. We aimed to contribute to reducing the unmet needs of cancer prevention and early detection services in Uganda through capacity building. METHODS: In 2017, we conducted two national and six regional cancer control stakeholders' consultative meetings. In 2017 and 2018, we trained district primary healthcare teams on cancer prevention and early detection. We also developed cancer information materials for health workers and communities and conducted a follow-up after the training. RESULTS: A total of 488 primary healthcare workers from 118 districts were trained. Forty-six health workers in the pilot East-central subregion were further trained in cervical, breast, and prostate cancer early detection (screening and early diagnosis) techniques. A total of 32,800 cancer information, education and communication materials; breast, cervical, prostate childhood and general cancer information booklets; health education guide, community cancer information flipcharts for village health teams and referral guidelines for suspected cancer were developed and distributed to 122 districts. Also, 16 public and private-not-for-profit regional hospitals, and one training institution received these materials. Audiovisual clips on breast, cervical, and prostate cancer were developed for mass and social media dissemination. A follow-up after six months to one year indicated that 75% of the districts had implemented at least one of the agreed actions proposed during the training. CONCLUSIONS: In Uganda, the unmet needs for cancer control services are enormous. However, building the capacity of primary healthcare workers to integrate prevention and early detection of cancer into primary health care based on low-cost options for low-income countries could contribute to reducing the unmet needs of cancer prevention and early detection in Uganda.

Mobile cancer prevention and early detection outreach in Uganda: Partnering with communities toward bridging the cancer health disparities through "asset-based community development model".

BACKGROUND: Communities in low-income countries are characterized by limited access to cancer prevention and early detection services, even for the commonest types of cancer. Limited resources for cancer control are one of the contributors to cancer health disparities. We explored the feasibility and benefit of conducting outreaches in partnership with local communities using the "asset-based community development (ABCD)" model. METHODS: We analyzed the quarterly Uganda cancer institute (UCI) community outreach cancer health education and screening output reported secondary data without individual identifiers from July 2016 to June 2019 to compare the UCI-hospital-based and community outreach cancer awareness and screening services based on the ABCD model. RESULTS: From July 2016 to June 2019, we worked with 107 local partners and conducted 151 outreaches. Of the total number of people who attended cancer health education sessions, 201 568 (77.9%) were reached through outreaches. Ninety-two (95%) cancer awareness TVs and radio talk-shows conducted were sponsored by local partners. Of the total people screened; 22 795 (63.0%) cervical, 22 014 (64.4%) breast, and 4904 (38.7%) prostate screening were reached through community outreach model. The screen-positive rates were higher in hospital-based screening except for Prostate screening; cervical, 8.8%, breast, 8.4%, prostate, 7.1% than in outreaches; cervical, 3.2%, breast, 2.2%, prostate, 8.2%. Of the screened positive clients who were eligible for precancer treatment like cryotherapy for treatment of precervical cancer lesions, thousands-folds monetary value and productive life saved relative to the market cost of cancer treatment and survival rate in Uganda. When the total number of clients screened for cervical, breast, and prostate cancer are subjected to the incremental cost of specific screening, a greater portion (98.7%) of the outreach cost was absorbed through community partnership. CONCLUSIONS: Outreaching and working in collaboration with communities as partners through asset-based community development model are feasible and help in cost-sharing and leverage for scarce resources to promote primary prevention and early detection of cancer. This could contribute to bridging the cancer health disparities in the target populations.

Cancer Risk Studies and Priority Areas for Cancer Risk Appraisal in Uganda.

Background: Research into aetiologies and prevention of the commonest cancers and implementation of primary and secondary prevention can reduce cancer risk and improve quality of life. Moreover, monitoring the prevalence of cancer risk factors in a specific population helps guide cancer prevention and early detection efforts and national cancer control programming. Objective: This article aims to provide the scope and findings of cancer risk studies conducted in Uganda to guide researchers, health-care professionals, and policymakers. Methods: Between November 2019 to January 2020, we searched peer-reviewed published articles in Pubmed, EMBASE and Cochrane Library (Cochrane central register of controlled trials-CENTRAL). We followed the recommendation of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses - the PRISMA. The primary focus was to identify cancer risk and prevention studies conducted in Uganda and published in peer-reviewed journals from January 2000 and January 2020. We used key Boolean search terms with their associated database strings. Results: We identified 416 articles, screened 269 non-duplicate articles and obtained 77 full-text articles for review. Out of the 77 studies, we identified one (1%) randomized trial, two (2.5%) retrospective cohort studies and 14 (18%) case-control studies, 46 (60%) cross-sectional studies, five (6.4%) ecological studies, three panel studies (4%) and six (8%) qualitative studies. Cervical cancer was the most studied type of cancer in Uganda (23.4%, n = 18 studies), followed by lymphomas - both Hodgkin and Non-Hodgkin sub-types (20.7%), n = 16 studies) and breast cancer (15.6%, n = 12 studies). In lymphoma studies, Burkitt lymphoma was the most studied type of lymphoma (76%, n = 13 studies). The studies concentrated on specific cancer risk awareness, risk perceptions, attitudes, uptake of screening, uptake of human papillomavirus vaccination, the prevalence of some of the known cancer risk factors and obstacles to accessing screening services. Conclusion: The unmet need for comprehensive cancer risk and prevention studies is enormous in Uganda. Future studies need to comprehensively investigate the known and putative cancer risk factors and prioritize the application of the higher-hierarchy evidence-generating epidemiological studies to guide planning of the national cancer control program.

Breast cancer early detection and diagnostic capacity in Uganda.

BACKGROUND: Greater than 80% of women presenting for breast cancer treatment in Uganda have late-stage disease, which is attributable to a dysfunctional referral system and a lack of recognition of the early signs and symptoms among primary health care providers, and compounded by the poor infrastructure and inadequate human capacity. Improving the breast health care system requires a systemic approach beginning with situational analysis to identify systematic gaps that prevent sustainable improvements in outcome. METHODS: The authors performed a situational analysis of the breast health care system using methods developed by the Breast Health Global Initiative. Based on their findings, they developed a series of recommendations for strengthening the health system for the early diagnosis of breast cancer based on clinical detection, referral, tissue sampling, and diagnosis. RESULTS: Deficits in the recognition of breast cancer signs and symptoms, the underuse of clinical breast examination as a diagnostic and/or screening tool, the centralization of diagnostic tests (radiology and pathology), reliance on excisional biopsies rather than needle biopsies, and a lack of trained professionals and knowledge of the referral system all contribute to significant health system delays. CONCLUSIONS: To strengthen referral networks and improve the early diagnosis of breast cancer in Uganda, national referral hospitals should provide educational programs to primary health care providers in community health centers (CHCs), at which the majority of women first present with symptoms. At secondary district-level facilities in which imaging and tissue sampling can be performed, the capacity for diagnostic testing could be increased through task shifting of basic interpretation (abnormal vs normal) from specialists to nonspecialists using networking technology to facilitate remote oversight from specialists at the national referral hospitals.

Socio-culturally mediated factors and lower level of education are the main influencers of functional cervical cancer literacy among women in Mayuge, Eastern Uganda.

BACKGROUND: Health literacy (HL) is the degree of an individual's knowledge and capacity to seek, understand and use health information to make decisions on one's health, yet information on the functional level of cervical cancer literacy in Mayuge and Uganda as a whole is lacking. We, therefore, assessed the level of functional cervical cancer literacy among women aged 18-65 years in Mayuge district in five functional HL domains; prior knowledge, oral, print, numeracy and e-health. Understanding the factors associated with cervical cancer literacy is also pertinent to cervical health communication programming, however, no study has documented this in Uganda and particularly in Mayuge. Mayuge is a rural population based cancer registry and one of the sites for piloting cancer control interventions in Uganda. We also assessed the factors associated with cervical cancer literacy and awareness about currently available cervical cancer preventive services. METHODS: The study protocol was approved by the Uganda Cancer Institute research and ethic committee (UCI-REC). In August 2017, we assessed five HL domains; cervical cancer knowledge, print literacy, oral literacy using audio-clip, numeral literacy and perceived e-HL among 400 women at household levels. Correct response was scored 1 and incorrect response was scored 0 to generate the mean percentage score for each domain. The mean scores were classified as limited, basic and proficient bands based on the McCormack HL cut-offs scale for knowledge, print, oral and e-health and Weiss cut-offs in the newest vital signs (NVS) for numeracy. We used the cervical cancer literacy scores to explore the effect of selected study variables on cervical cancer literacy. We also conducted five focus group discussions (FGDs) based on the theoretical constructs of the PEN-3 model. RESULTS: The majority (96.8%) of the participants demonstrated a limited level of cervical cancer literacy with a mean score of 42%. Women who had completed a primary level of education or lower (OR = 3.91; p = 0.044) were more likely to have limited cervical cancer literacy. The qualitative data indicated that the women had limited cervical cancer literacy coupled with limited decisional, social and financial support from their male partners with overall low locus of control. Most (92.3%) of the women were not aware of the available cervical cancer services and had no intention to screen (52.5%). CONCLUSIONS: The women in Mayuge in general have limited cervical cancer literacy except oral HL domain. Limited cervical cancer literacy was highest among women with lower level of education and overall literacy seemed to be influenced on the higher side by socio-cultural constructs characterised by limited decisional, social and personal resources among the women with overall low locus of control. The Mayuge women further demonstrated scant knowledge about the available health services in their district and low intention to screen. Multi-strategy cervical health empowerment programme is needed to improve cervical HL using orally disseminated messages.

The association between HIV infection and cervical cancer presentation and survival in Uganda.

Our objective was to determine how HIV infection impacts cervical cancer stage at presentation and overall survival (OS) among Ugandan women. This was a prospective study of 149 women diagnosed with cervical cancer from 2013 to 2015 at the Uganda Cancer Institute. Poisson regression models were fit to calculate prevalence ratios (PR) for the association between HIV infection and late stage at cancer diagnosis. The association between HIV infection and OS after cervical cancer diagnosis was evaluated using Cox proportional hazards models. The cohort included 53 HIV-positive and 96 HIV-negative participants. Median age at diagnosis was 44 years for HIV-positive and 54 years for HIV-negative participants. Seventy-seven percent of HIV-positive participants received antiretroviral therapy. Median baseline CD4 count was 373 cells/mm3 for HIV-positive participants versus 926 cells/mm3 for HIV-negative participants. Thirty-two percent of HIV-positive participants were diagnosed with late stage cervical cancer (III-IV) versus 39% of HIV-negative participants. No association was found between late stage at cancer diagnosis and HIV infection (PR adjusted for age, parity and transport cost 1.0, 95%CI 0.6-1.8). Most women presenting for care received cancer treatment, though almost half who received radiotherapy did not complete treatment. The median OS was 13.7 months for HIV-positive participants and 24.3 months for HIV-negative participants. After adjusting for age and stage, HIV infection was weakly associated with OS (HR 1.3, 95%CI 0.8-2.2). In Uganda, cervical cancer is often incompletely treated and survival remains poor. HIV infection was not associated with cervical cancer stage at diagnosis, but may be weakly associated with shorter survival.

Breast cancer care in Uganda: A multicenter study on the frequency of breast cancer surgery in relation to the incidence of breast cancer.

BACKGROUND: Breast cancer is the most common cancer in women worldwide. Considerable funding and efforts are invested in breast cancer research and healthcare, but only a fraction of this reaches women and healthcare systems in low income countries. Surgical treatment is an essential part of breast cancer care, but access to surgery is in general very limited in low income countries such as Uganda. In this study, the previously unknown nationwide rate of breast cancer surgery was investigated. METHODS AND FINDINGS: This was a multicenter, retrospective study, investigating breast cancer surgery in the public healthcare system in Uganda. Data were collected from operating theater registries at primary, secondary and tertiary level healthcare centres throught the country, including 14 general hospitals, the 14 regional referral hospitals and the national referral hospital. Patients who underwent major surgery for breast cancer at these hospitals during 2013 and 2014 were included. The number of breast cancer procedures performed, geographical variation, level of healthcare staff performing surgery and patient characteristics were investigated. After correction for missing data, a total of 137 breast cancer procedures were performed each year within the public healthcare system, corresponding to 5.7% of the breast cancer incidence in the country at that time. Most procedures (n = 161, 59.0%) were performed at the national referral hospital by qualified surgeons. Many of the patients were young; 30.1% being less than 40 years old. The proportion of male breast cancers in the study was large (6.2%). CONCLUSIONS: The rate of breast cancer surgery in Uganda is minimal and in several parts of the country breast cancer surgery is not performed at all. More resources must be directed towards breast cancer in low income countries such as Uganda. The fact that the patients were young calls for further research, prevention and treatment specifically targeting young women in the study setting.

Acceptability of cervical cancer screening using visual inspection among women attending a childhood immunization clinic in Uganda.

OBJECTIVE: To evaluate the acceptability and performance of cervical cancer (CC) screening using visual inspection with acetic acid (VIA) integrated into a rural immunization clinic in Uganda. METHODS/MATERIALS: We conducted a cross-sectional pilot study in rural Uganda. We explored associations between women's characteristics and acceptance of VIA testing. We collected samples for Papanicolaou (Pap) smear testing in a random subset of women and used results from this test as a comparator for assessing VIA performance. RESULTS: We enrolled 625 women of whom 571 (91.4%) accepted and 54 (8.6%) refused CC screening. In the univariate model, age (Odds Ratio (OR)=1.10; p-value<0.001) and employment status (OR 2.00; p-value=0.019) were significantly associated with acceptance of VIA screening. In the multivariate model, no characteristic was independently associated with acceptance of VIA screening after adjusting for other factors. Compared to reference Pap smear, CC screening with VIA had a sensitivity of 50% and a specificity of 97.7%. CONCLUSIONS: CC screening with VIA is highly acceptable in the setting of rural immunization clinics in Uganda. Studies to assess which screening method would be the most effective and cost-effective are needed before stakeholders can consider adopting screening programs at scale.

United against cancer: prevention to end-of-life care-highlights from the Uganda Cancer Institute-Palliative Care Association of Uganda Joint International Conference on Cancer and Palliative Care and the 7th Palliative Care Conference, 24-25 August 2017, Kampala, Uganda.

The Uganda Cancer Institute (UCI) and the Palliative Care Association of Uganda (PCAU) jointly hosted an international conference on cancer and palliative care in August 2017 in Kampala, Uganda. At the heart of the conference rested a common commitment to see patient care improved across Uganda and the region. The theme - United Against Cancer: Prevention to End-of-Life Care - reflected this joint vision and the drive to remember that cancer care should include prevention, early diagnosis and screening, treatment, rehabilitation and palliative care. The conference brought together 451 delegates from 17 countries. The key themes of the conference included: the importance of the World Health Assembly Resolutions on Palliative Care (2014) and cancer care (2017); the need to develop a National Cancer Control Programme; strategies for effective cancer diagnosis and treatment in low- and middle-income countries; advocacy, human rights and access to essential medicines, including access to opioids and nurse prescribing; paediatric care; leadership and commitment; collaboration; resources (financial and human), the recognition that palliative care is not limited to cancer care and the importance of learning from each other. The conference also gave the opportunity to celebrate the 50th Anniversary of the UCI, with a celebration dinner attended by the Minister of Health and the US Ambassador. Participants reported that the conference was a forum that updated them in all aspects of cancer and palliative care, which challenged their knowledge, and was enlightening in terms of current treatment options for individuals with cancer. The benefits of having a joint conference were recognised, allowing for further networking between cancer and palliative care organisations. This conference, highlighting many developments in cancer and palliative care, served as a unique opportunity to bring people together and unite them in developing cancer and palliative care.