Diagnostic and pre-treatment intervals among patients with cervical cancer attending care at the Uganda Cancer Institute: a cross-sectional study.

BACKGROUND: Majority of patients with cervical cancer in the low- and middle-income countries experience long diagnostic and pre-treatment intervals. This study sought to determine the factors associated with the diagnostic and pre-treatment intervals among patients with cervical cancer. METHODS: This was a cross-sectional study conducted at the Uganda Cancer Institute (UCI) during October 2019 to January 2020. Patients aged ≥ 18 years with histological diagnosis of cervical cancer were consecutively sampled. Data were collected using a pre-tested semi-structured questionnaire and a data abstraction form. Diagnostic intervals, defined as the time between first visit of a patient to a primary healthcare provider to time of getting confirmed diagnosis, of ≤ 3 months was defined as early & >3 months as late. Pre-treatment intervals, which is the time from histological diagnosis to starting cancer chemo-radiotherapy of ≤ 1 month was defined as early and > 1 month as late. Data were analysed using STATA version 14.0. We used modified Poisson regression models with robust variance to determine socio-demographic and clinical factors associated with the intervals. RESULTS: The mean age of the participants was 50.0 ± 11.7 years. The median diagnostic and pre-treatment intervals were 3.1 (IQR: 1.4-8.2) months and 2.4 (IQR: 1.2-4.1) months respectively. Half of the participants, 49.6% (200/403) were diagnosed early; one in 5 patients, 20.1% (81/403) promptly (within one month) initiated cancer chemo-radiotherapy. Participants more likely to be diagnosed early included those referred from district hospitals (level 5) (aPR = 2.29; 95%CI: 1.60-3.26) and with squamous cell carcinomas (aPR = 1.55; 95%CI: 1.07-2.23). Participants more likely to be diagnosed late included those who first discussed their symptoms with relatives, (aPR = 0.77; 95%CI: (0.60-0.98), had > 2 pre-referral visits (aPR = 0.75; 95%CI (0.61-0.92), and had advanced stage (stages 3 or 4) (aPR = 0.68; 95%CI: 0.55-0.85). Participants more likely to initiate cancer chemo-radiotherapy early included older patients (≥ 60 years) (aPR = 2.44; 95%CI: 1.18-5.03). Patients likely to start treatment late were those who had ≥2 pre-referral visits  (aPR = 0.63; 95%CI: 0.41-0.98) and those that took 3 - 6 months with symptoms before seeking healthcare (aPR = 0.52;95%CI: 0.29 - 0.95). CONCLUSION: Interventions to promote prompt health-seeking and early diagnosis of cervical cancer need to target primary healthcare facilities and aim to enhance capacity of primary healthcare professionals to promptly initiate diagnostic investigations. Patients aged < 60 years require targeted interventions to promote prompt initiation of chemo-radiation therapy.

Moving forward through consensus: a national Delphi approach to determine the top research priorities in prostate cancer in Uganda.

OBJECTIVE: To identify key areas for research in prostate cancer (PC) in the Ugandan context by establishing the major health system, socioeconomic and clinical barriers to seeking, reaching and receiving high-quality cancer care. DESIGN: Modified Delphi Technique. SETTING: Government and private-not-for-profit hospitals. METHODS: We applied a two-stage modified Delphi technique to identify the consensus view across cancer experts. In round 1, experts received a questionnaire containing 21 statements drawn from a systematic review identifying the reason for the delay in accessing cancer care. Each statement was scored out of 20. Statements scoring ≥15 from over 70% of participants were prioritised for inclusion while statements for which <30% of participants gave a score of ≥15 were excluded. Sixteen statements were included in round 2 as they did not receive consensus for inclusion or exclusion. RESULTS: We found that the top six research priority areas arise from challenges including: (1) lack of diagnostic services-ultrasound, laboratory tests and biopsy facilities; (2) high costs of services, for example, surgery, radiotherapy, hormone therapy are unaffordable to most patients, (3) lack of essential medicines, (4) limited radiotherapy capacity, (5) lack of awareness of cancer as a disease and low recognition of symptoms, (6) low healthcare literacy. The lack of critical surgical supplies, high diagnostic and treatment costs were ranked highest in order of importance in round 1. Round 2 also revealed lack of diagnostic services, unavailability of critical medicines, lack of radiotherapy options, high costs of treatments and lack of critical surgical supplies as the top priorities. CONCLUSION: These research priority areas ought to be addressed in future research to improve prompt PC diagnosis and care in Uganda. There is need to improve the supply of high-quality affordable anticancer medicines for PC patients so as to improve the survivorship from the cancer.

Factors associated with diagnostic and pre-treatment intervals among breast cancer patients attending care at the Uganda Cancer Institute: A cross-sectional study.

BACKGROUND: Most breast cancer (BC) patients in Uganda are diagnosed with advanced-stage disease and experience poor outcomes. This study examined the diagnostic and pre-treatment intervals and factors associated with these intervals among BC patients attending care at the Uganda Cancer Institute (UCI). METHODS: This was a cross-sectional, facility-based study. Data were collected using structured questionnaire administered by trained research assistants and analyzed using STATA version 14.0. Modified Poisson regressions models were used to determine the strength of associations between independent variables and diagnostic and pre-treatment intervals. RESULTS: The mean age (±SD) of the 401 participants was 47.1 ± 11.7 years. Four in 10 participants had stage III (41.9%; n = 168) and over a third (34.7%; n = 140) stage IV cancers. The median interval from first consultation to diagnosis, i.e. diagnostic interval (DI) was 5.6 months (IQR: 1.5-17.0), while the median interval from histological diagnosis to start of chemotherapy, i.e. pre-treatment interval (PTI) was 1.7 months (IQR: 0.7-4.5). Majority (85%, n = 341) of participants were diagnosed at ≥3 months from first consultation with clinicians. Participants with tertiary education and those who lived within 100-199 km from the UCI were about four times and twice more likely to be diagnosed early (DI <3 months from first consultation) ([aPR = 3.88; 95% CI: 1.15-13.0] and [aPR = 2.19; 95% CI: 1.06-4.55]), respectively. About half (48.3%; n = 176) of participants started chemotherapy within 1 month of cancer diagnosis. Patients who lived more than 300 km from the UCI were less likely to start chemotherapy within 1 month of histology diagnosis of cancer. [Correction added on October 17, 2023 after first online publication. The term ', i.e.' has been included in the results section in this version.] CONCLUSION: Majority of breast cancer patients are diagnosed late and in advanced stages. There is need to promote all efforts toward timely diagnosis when cancers are still in early stages by identifying factors responsible for prolonged diagnostic intervals among breast cancer patients.

Traditional health practices: A qualitative inquiry among traditional health practitioners in northern Uganda on becoming a healer, perceived causes of illnesses, and diagnostic approaches.

BACKGROUND: The practice of traditional and complementary medicine is increasing in most low-and middle-income countries especially for chronic communicable and non-communicable diseases. In this study, we aimed to understand how people gain healing power and become traditional health practitioners (THPs), perceived causes of illnesses, and how THPs diagnose illnesses. METHODS: This was a cross-sectional qualitative interview-based study. We used semi-structured in-depth guides to collect data from THPs identified through the Acoli cultural institutions and snowball sampling technique. The study team visited the THPs and interviewed them in their homes. Some THPs allowed the study team to visit them more than once and as well observe their healing practices and medicines. Thematic analysis approach was used to analyze the data. Atlas.ti version 9.2 was used to support data analysis. RESULTS: Twenty two THPs aged 39-80 years were included in the study. Most of the respondents were male, and married. We identified three main themes: (i) how people gain healing power and become traditional health practitioners; (ii) perceived causes of illnesses; and (iii) how illnesses are diagnosed. The majority of respondents reported that most people become THPs through: inheriting healing power from their parents or grandparents; transfer of healing powers from senior healers; instructions during visions and dreams; and, acquiring healing power during spirits possessions. Perceived causes of illnesses included: fate and natural causes, spirits attacks, curses by elders, witchcraft, contagion and infections, poor hygiene, heredity, and malevolent actions. THPs diagnose illnesses through various approaches including consultations with spirits, observing patterns of occurrences and events, evaluation of symptoms and signs of illnesses, use of bones from animals/birds and other objects to diagnose illnesses, performing diagnostic rituals, and using biomedical laboratory testing in health facilities. CONCLUSION: Healing knowledge and powers are acquired in particular ways that can be traced to appraise authenticity of healers during registration and licensing to ensure safety of patients. Understanding perspectives of the THPS on causes of illnesses and how diagnoses are made potentially informs strategies for integration and or collaboration between the national biomedical health system and traditional health practices.

The use of traditional medicine practitioner services for childhood illnesses among childbearing women: a multilevel analysis of demographic and health surveys in 32 sub-Saharan African countries.

BACKGROUND: Insights into the use of traditional medicine practitioners (TMP)-for common childhood diseases such as diarrhea and respiratory infections are important to understand the role of Traditional Medicine (TM) in reducing the increasing childhood morbidity and mortality in sub-Saharan Africa (SSA). However, a comprehensive picture of TMP utilisation and its associated factors for childhood illness in SSA is lacking. This study aimed to estimate the prevalence of the use of traditional medicine practitioner services to treat childhood illnesses among women with children under five years old and to identify individual and community-level factors associated with TMP use in SSA. METHODS: The analysis used Demographic and Health Surveys (DHS) dataset collected between 2010 and 2021 among 353,463 under-fives children from 32 SSA countries. Our outcome variable was the use of TMP for childhood illness, defined as having diarrhoea or fever/cough or both. Using STATA v14, we employed the random effect meta-analysis to estimate the pooled prevalence of TMP use for childhood illness and a two-level multivariable multilevel modelling to determine the individual and community-level factors associated with consultation of a TMP. RESULTS: Approximately [2.80% (95%CI: 1.88-3.90)] women who sought healthcare for childhood illnesses utilised the service of a TMP with the highest occurring in Cote d'Ivoire [16.3% (95%CI: 13.87-19.06)] and Guinea (13.80% (95%CI: 10.74-17.57)] but the lowest in Sierra Leone [0.10%(95%CI:0.01-1.61)]. Specifically, approximately [1.95% (95%CI: 1.33-2.68)] and [1.09% (95%CI:0.67-1.60)] of women sought the service of a TMP for childhood diarrhea and fever/cough, respectively. Women with no formal education [AOR = 1.62;95%CI:1.23-2.12], no media access [AOR = 1.19;95%CI:1.02-1.39), who lived in a male-headed household [AOR = 1.64;95%CI:1.27-2.11], without health insurance [AOR = 2.37;95%CI: 1.53-3.66], who considered it a problem getting permission to visit a health facility [AOR = 1.23;95%CI:1.03-1.47] and who perceived the size of their children at birth to be above average[AOR = 1.20;95%CI:1.03-1.41] had higher odds of using TMP for childhood illnesses. CONCLUSIONS: Although the prevalence of TMP for childhood illnesses appeared low, our findings highlight that TMPs continue to play a critical role in managing childhood illnesses in SSA. It is essential that policymakers and service providers should incorporate the potential role of TMPs in the design, review and implementation of child health policies in SSA. Also, the interventions for curtailing childhood illnesses should be focused on the characteristics of women who use TMPs for childhood diseases identified in our study.

Delays in seeking, reaching and access to quality cancer care in sub-Saharan Africa: a systematic review.

OBJECTIVES: Late presentation and delays in diagnosis and treatment consistently translate into poor outcomes in sub-Saharan Africa (SSA). The aim of this study was to collate and appraise the factors influencing diagnostic and treatment delays of adult solid tumours in SSA. DESIGN: Systematic review with assessment of bias using Risk of Bias in Non-randomised Studies of Exposures (ROBINS-E) tool. DATA SOURCES: PubMed and Embase, for publications from January 1995 to March 2021. ELIGIBILITY CRITERIA: Inclusion criteria: quantitative or mixed-method research, publications in English, on solid cancers in SSA countries. EXCLUSION CRITERIA: paediatric populations, haematologic malignancies, and assessments of public perceptions and awareness of cancer (since the focus was on patients with a cancer diagnosis and treatment pathways). DATA EXTRACTION AND SYNTHESIS: Two reviewers extracted and validated the studies. Data included year of publication; country; demographic characteristics; country-level setting; disease subsite; study design; type of delay, reasons for delay and primary outcomes. RESULTS: 57 out of 193 full-text reviews were included. 40% were from Nigeria or Ethiopia. 70% focused on breast or cervical cancer. 43 studies had a high risk of bias at preliminary stages of quality assessment. 14 studies met the criteria for full assessment and all totaled to either high or very high risk of bias across seven domains. Reasons for delays included high costs of diagnostic and treatment services; lack of coordination between primary, secondary and tertiary healthcare sectors; inadequate staffing; and continued reliance on traditional healers and complimentary medicines. CONCLUSIONS: Robust research to inform policy on the barriers to quality cancer care in SSA is absent. The focus of most research is on breast and cervical cancers. Research outputs are from few countries. It is imperative that we investigate the complex interaction of these factors to build resilient and effective cancer control programmes.

Perceived risk and risk reduction behaviours of female first-degree relatives of breast cancer patients attending care at Uganda cancer institute.

OBJECTIVE: The objective of this study was to assess the perceived risk of breast cancer (BC) and adoption of risk reduction behaviours among female first-degree relatives (FDRs) of BC patients attending care at the Uganda Cancer Institute (UCI). METHODS: A cross-sectional study was performed using a questionnaire to collect data between March to October 2019. Adult female FDRs of patients attending care at UCI were recruited consecutively. Breast cancer perceived risk was assessed using a verbal measure; 'My chances of getting BC are great' on a Likert scale with 5 response alternatives. Chi square tests and modified Poisson regression using generalised estimating equations model were used to determine associations and examine factors associated with perceived risk of BC. RESULTS: We enrolled 296 FDRs from 186 female BC patients. Few participants 118/296 (40%) had high perceived risk of BC. Majority 165/296 (56%), had ever practiced breast self-examination. At the multivariable modified Poisson GEE model, women aged 36-45 years were more likely to perceive themselves to be at high risk of developing BC compared to women aged 18-25 years (adjusted prevalence ratio: 1.174; 95% confidence interval [95%CI] = 1.05-2.88; p value = 0.030) after adjusting for age, religion, educational level and residence. CONCLUSION: Few FDRs of BC patients perceived themselves to be at high risk of developing BC and do not seek risk reduction measures including screening and early diagnosis approaches. Breast cancer health education especially targeting younger women should emphasize the increased risk of BC in FDRs.

Patients' attitudes towards involvement of medical students in their care at university teaching hospitals of three public universities in Uganda: a cross sectional study.

BACKGROUND: Comfort of patients with medical students is important and promotes appropriate clinical reasoning and skills development in the students. There is however limited data in this field in Uganda. In this study, we examined the attitudes and comfort of patients attending care at the medical and obstetrics/gynecology specialties in teaching hospitals of three public universities in Uganda. METHODS: We conducted a cross sectional study among patients attending care at teaching hospitals for three public universities; Makerere University (Mak), Mbarara University of Science and Technology (MUST), and Gulu University (GU). Logistic regression was used to determine the magnitude of associations between independent and dependent variables. Two-sided p < 0.05 was considered statistically significant. RESULTS: Eight hundred fifty-five patients participated in the study. Majority were aged 18 - 39 years (54%, n = 460), female (81%, n = 696) and married (67%, n = 567). Seventy percent (n = 599) of participants could recognize and differentiate medical students from qualified physicians, and had ever interacted with medical students (65%, n = 554) during earlier consultations. Regarding attitudes of patients towards presence of medical students during their consultations, most participants (96%; n = 818) considered involvement of medical students in patients' care as essential ingredient of training of future doctors. Most participants prefer that medical students are trained in the tertiary public hospitals (80%; n = 683) where they attend care. Participants who were single/never married were 68% less likely to recognize and differentiate medical students (aOR = 0.32, 95%CI: 0.22 - 0.53) from other members of the healthcare team as compared with married participants. Participants with university education had 55% lower odds of being comfortable with presence of medical students during consultation compared to those with primary education (aOR = 0.45, 95%CI: 0.21 - 0.94). Participants from MUST teaching hospital had twofold higher odds of being comfortable with presence of medical students compared to participants from Mak teaching hospitals (aOR = 2.01; 95%CI: 1.20 - 3.39). CONCLUSION: Patients are generally comfortable with medical students' involvement in their care; they prefer to seek care in hospitals where medical students are trained so that the students may contribute to their care. Medical students need to introduce themselves appropriately so that all patients can know them as doctors in training; this will promote patients' autonomy and informed decisions.

'There Were Moments We Wished She Could Just Die': The Highly Gendered Burden of Nodding Syndrome in Northern Uganda.

Nodding Syndrome (NS) occurs within a wide spectrum of epilepsies seen in onchocerciasis endemic areas of sub-Saharan Africa. It has debilitating consequences on affected individuals and increases the socio-economic, physical and psychological burden on care-givers and their households, diminishing their standing within the community. Social science research on the disproportionate burden of the disease on females is limited. Based on ethnographic research over 3 years in northern Uganda, we explored the burden of being ill and care-giving for persons with NS from a gendered perspective. We found that NS-affected females were at greater risk of physical and psychological abuse, sexual violence, unwanted pregnancies, sexually transmitted infections and stigma, in a context of deteriorating socio-economic conditions. Primary care-givers of the NS-affected, mostly women, struggled to make ends meet and were subjected to stigma and abandonment. Targeted interventions, including legal protection for affected females, stigma reduction, and psycho-social and financial support are needed.

Evaluating Pain Management Practices for Cancer Patients among Health Professionals: A Global Survey.

Background: Cancer incidence in the world is predicted to increase in the next decade. While progress has been in diagnosis and treatment, much still remains to be done to improve cancer pain therapy, mainly in underserved communities in low-income countries. Objective: To determine knowledge, beliefs, and barriers regarding pain management in both high- and low-income countries (according to the WHO classification); and to learn about ways to improve the current state of affairs. Design: Descriptive survey. Setting/Subjects: Fifty-six countries worldwide; convenience sample of 1639 consisted of 36.8% physicians; 45.1% nurses, and 4.5% pharmacists employed in varied settings. Results: Improved pain management services are key elements. Top barriers include religion factors, lack of appropriate education and training at all levels, nonadherence to guidelines, patients' reluctance to report on pains, over regulation associated with prescribing and access to opioid analgesics, fear of addiction to opioids, and lack of discussions around prognosis and treatment planning. Conclusion: The majority of patients with cancer in low-income countries are undertreated for their pain. Promoting cancer pain accredited program of training and education on pain management for physicians and nurses is crucial, as well as advocating policymakers and the public at large.

Exploring primary care level provider interpretation and management of potential breast and cervical cancer signs and symptoms in South Africa.

OBJECTIVES: Women with potential breast and cervical cancer symptoms in South Africa (SA) usually self-present to primary health care (PHC) clinics. The aim of this study was to explore PHC provider interpretation and management of potential breast and cervical cancer signs and symptoms. METHODS: In-depth interviews with PHC providers incorporating vignettes were conducted between April and May 2019 in two sites in SA. Four vignettes (two breast and two cervical) were developed by the research team to capture aspects of provider symptom interpretation, reasoning, actions and challenges. The content of the vignettes was informed by a preceding community-based survey and qualitative interviews with symptomatic women. Interviews were audio recorded, transcribed verbatim and analysed using a thematic analysis approach. RESULTS: Twenty-four PHC providers were interviewed (12 urban, 12 rural; median age: 43 years). Four main themes relating to clinical assessment and reasoning; referral and feedback challenges; awareness of breast and cervical cancer policy guidelines and training and education needs emerged. Vignette-prompted questions relating to presenting symptoms, and possible accompanying symptoms and signs, demonstrated comprehensive proposed history taking and clinical assessment by PHC providers. Cancer was considered as a potential diagnosis by the majority of PHC providers. PHC providers also considered the possibility of infectious causes for both breast and cervical vignettes indicating they would ask questions around human immunodeficiency virus status, use of anti-retroviral therapy, and, for those with cervical symptoms, would need to rule out a sexually transmitted infection. Sexual assault was considered in assessing the cervical symptom scenarios. Providers raised issues around cumbersome booking systems and lack of feedback from referral centres. The need for provider and patient education and training to improve timely diagnosis of breast and cervical cancer was raised. Most providers were not aware of current breast or cervical cancer policy guidelines. CONCLUSION: Clinical assessment at PHC level is complex and influenced by local health issues. Providing context-relevant training and support for PHC providers, and improving referral and feedback systems, could assist timely diagnosis of women with symptomatic breast and cervical cancer.

Risk Factors for Nodding Syndrome and Other Forms of Epilepsy in Northern Uganda: A Case-Control Study.

Epidemiological studies suggest a link between onchocerciasis and various forms of epilepsy, including nodding syndrome (NS). The aetiopathology of onchocerciasis associated epilepsy remains unknown. This case-control study investigated potential risk factors that may lead to NS and other forms of non-nodding epilepsy (OFE) in northern Uganda. We consecutively recruited 154 persons with NS (aged between 8 and 20 years), and age-frequency matched them with 154 with OFE and 154 healthy community controls. Participants' socio-demography, medical, family, and migration histories were recorded. We tested participants for O. volvulus serum antibodies. The 154 controls were used for both OFE and NS separately to determine associations. We recruited 462 people with a median age of 15 years (IQR 14, 17); 260 (56.4%) were males. Independent risk factors associated with the development of NS were the presence of O. volvulus antibodies [aOR 8.79, 95% CI (4.15-18.65), p-value < 0.001] and preterm birth [aOR 2.54, 95% CI (1.02-6.33), p-value = 0.046]. Risk factors for developing OFE were the presence of O. volvulus antibodies [aOR 8.83, 95% CI (4.48-17.86), p-value < 0.001] and being born in the period before migration to IDP camps [aOR 4.28, 95% CI (1.20-15.15), p-value = 0.024]. In conclusion, O. volvulus seropositivity was a risk factor to develop NS and OFE; premature birth was a potential co-factor. Living in IDP camps was not a risk factor for developing NS or OFE.

From their own perspectives: a qualitative study exploring the perceptions of traditional health practitioners in northern Uganda regarding cancers, their causes and treatments.

BACKGROUND: Many cancer patients in the low- and middle-income countries seek care with traditional health practitioners (THPs) and use traditional and complementary medicines (T&CMs) for treatment of cancers. Little is known about the perceptions and influence of THPs on cancer patients' help-seeking and treatment decisions. We aimed to explore perceptions of THPs regarding cancers, cancer causes, and preferred treatments for cancers, in order to identify aspects that can inform interventions to improve cancer outcomes in Uganda. METHODS: We conducted this ethnographic study in northern Uganda. In-depth interviews were conducted at the respondents' homes in quiet, open places, and in the absence of none- respondents. Interviews were audio-recorded and transcribed verbatim within a week of the interviews. Thematic qualitative analysis approaches were used to identify themes and subthemes. RESULTS: We included 21 respondents in the study; most were male (16/21), married, with median age of 59 years (range 39 - 80). Most respondents perceived cancer as a new and challenging disease, while one respondent thought of cancer as a result of an imbalance within the body. Most confessed unawareness of the causes of cancers, but believed that cancer could result from the interplay of a number of factors including poor diets, ingestions of chemical agents, and assaults by the spirits of the dead. Some reported that cancers (especially of women's genital tracts) were sexually transmitted, or caused by accumulation of dirt. Only few healers treated cancers. Most respondents reported that they referred cancer patients to biomedical facilities, sometimes after they have first used their medicines. Most respondents hoped that collaborative research with scientists could help them identify potent T&CMs that cure cancers. CONCLUSION: Traditional health practitioners require training on cancer causes, symptoms and signs, and the necessity for prompt initiation of effective treatments in order to improve cancer outcomes. The predisposition of the majority of respondents to refer cancer patients to biomedical services sets a fertile ground for meaningful cooperation between biomedical and traditional health practices. The national health system in the low- and middle-income countries could formally recognize traditional health practices as a component of the national healthcare system, and encourage the two to practice side by side.

Epilepsy in Onchocerca volvulus Sero-Positive Patients From Northern Uganda-Clinical, EEG and Brain Imaging Features.

Globally, epilepsy is the most common chronic neurological disorder. The incidence in sub-Saharan Africa is 2-3 times higher than that in high income countries. Infection by Onchocerca volvulus may be an underlying risk factor for the high burden and based upon epidemiological associations, has been proposed to cause a group of disorders-Onchocerca associated epilepsies (OAE) like nodding syndrome (NS). To improve our understanding of the disease spectrum, we described the clinical, electroencephalographic (EEG) and magnetic resonance imaging (MRI) features of children with epilepsy and sero-positive for Onchocerca volvulus (possible OAEs other than nodding syndrome). Twenty-nine children and adolescents with non-nodding syndrome OAE in northern Uganda were enrolled. A diagnosis of OAE was made in patients with epilepsy and seizure onset after age 3 years, no reported exposure to perinatal severe febrile illness or traumatic brain injury, no syndromic epilepsy diagnosis and a positive Ov-16 ELISA test. Detailed clinical evaluation including psychiatric, diagnostic EEG, a diagnostic brain MRI (in 10 patients) and laboratory testing were performed. Twenty participants (69%) were male. The mean age was 15.9 (standard deviation [SD] 1.9) years while the mean age at seizure onset was 9.8 (SD 2.9) years. All reported normal early childhood development. The most common clinical presentation was a tonic-clonic seizure. The median number of seizures was 2 (IQR 1-4) in the previous month. No specific musculoskeletal changes, or cranial nerve palsies were reported, neither were any vision, hearing and speech difficulties observed. The interictal EEG was abnormal in the majority with slow wave background activity in 52% (15/29) while 41% (12/29) had focal epileptiform activity. The brain MRI showed mild to moderate cerebellar atrophy and varying degrees of atrophy of the frontal, parietal and occipital lobes. The clinical spectrum of epilepsies associated with Onchocerca may be broader than previously described. In addition, focal onset tonic-clonic seizures, cortical and cerebellar atrophy may be important brain imaging and clinical features.

Anticipated help seeking behaviour and barriers to seeking care for possible breast and cervical cancer symptoms in Uganda and South Africa.

OBJECTIVES: Breast and cervical cancers are leading causes of cancer morbidity and mortality in sub-Saharan Africa. Most women present with advanced-stage disease and have poor outcomes. This study aimed to describe anticipated help-seeking behaviour for possible breast and cervical cancer symptoms, barriers to accessing health care and factors associated with less timely anticipated help-seeking in urban and rural settings in Uganda and South Africa (SA). METHODS: We conducted a cross-sectional community-based survey between August and December 2018. Data were collected from one randomly selected woman per household using the African Women Awareness of CANcer breast and cervical cancer tool. Anticipated help-seeking behaviour was dichotomised into waiting <1week or ≥1 week to seek care. Multivariable analysis identified factors associated with anticipated help-seeking behaviour. RESULTS: One thousand, seven hundred fifty-eight women participated (Uganda 873, SA 885, median age 34, interquartile ranges 26-47). Most would discuss symptoms with someone close to them (87.7% for breast, 83.0% for cervical symptoms). The majority anticipated seeking care from a health facility in <1 week: 86.1% and 88.0%, respectively, for breast and cervical symptoms. 38.7% of women expected to encounter at least 1 barrier when seeking care. Lack of money for transport or clinic costs was the most common barrier (24.6% of participants). For both cancers and in both countries, women who reported more barriers were significantly less likely to anticipate seeking timely care. In SA, rural location was also associated with longer anticipated time to seek care, adjusted prevalence ratio (aPR) 2.92, 95% confidence interval (CI) 1.48-5.76 and aPR 2.42, 95% CI 1.08-5.45 for breast and cervical cancer, respectively. CONCLUSION: Interventions that improve community level cancer knowledge and highlight the importance of prompt help-seeking for possible symptoms are important to promote timely care seeking. In addition, addressing financial barriers by reducing transport and clinic costs and tackling geographical inequities in access to care could support women in seeking timely care for possible symptoms.

Symptom appraisal, help-seeking and perceived barriers to healthcare seeking in Uganda: an exploratory study among women with potential symptoms of breast and cervical cancer.

OBJECTIVE: We assessed the process of recognising abnormal bodily changes, interpretations and attributions, and help-seeking behaviour among community-based Ugandan women with possible symptoms of breast and cervical cancer, in order to inform health interventions aiming to promote timely detection and diagnosis of cancer. DESIGN: Qualitative in-depth interviews. SETTING: Rural and urban communities in Uganda. PARTICIPANTS: Women who participated in the African Women Awareness of CANcer cross-sectional survey who disclosed potential breast and cervical cancer symptoms were eligible; recruitment was purposive. Interviews were conducted in women's homes, lasted between 40 and 90 min, were audio-recorded, transcribed verbatim and translated to English. Thematic analysis was used to identify themes and subthemes, underpinned by the conceptual framework of the Model of Pathways to Treatment. RESULTS: 23 women were interviewed: 10 had potential symptoms of breast cancer and 13 of cervical cancer. Themes regarding symptom appraisal and help-seeking included the: (1) detection and interpretation of abnormal bodily sensations; (2) lay consultations regarding bodily changes; (3) iterative process of inferring and attributing illnesses to the bodily changes; (4) restricted disclosure of symptoms to lay people due to concerns about privacy and fear of stigmatisation; (5) help-seeking from multiple sources including both traditional and biomedical health practitioners, and (6) multiple perceived barriers to help-seeking including long waiting times, lack of medicines, absenteeism of healthcare professionals, and lack of money for transport and medical bills. CONCLUSION: Women with potential symptoms of breast and cervical cancer undergo complex processes of symptom interpretation, attributing symptoms or inferring illness, and lay consultations before undertaking help-seeking and management. Increasing community understanding of breast and cervical cancer symptoms, and tackling perceived barriers to health-seeking, could lead to prompt and appropriate symptom appraisal and help-seeking, and contribute to improving cancer outcomes.

Household poverty, schooling, stigma and quality of life in adolescents with epilepsy in rural Uganda.

BACKGROUND: Epilepsy remains a leading chronic neurological disorder in Low- and Middle-Income Countries. In Uganda, the highest burden is among young rural people. We aimed to; (i) describe socio-economic status (including schooling), and household poverty in adolescents living with epilepsy (ALE) compared to unaffected counterparts in the same communities and (ii) determine the factors associated with the overall quality of life (QoL). METHODS: This was a cross-sectional survey nested within a larger study of ALE compared to age-matched healthy community children in Uganda. Between Sept 2016 to Sept 2017, 154 ALE and 154 healthy community controls were consecutively recruited. Adolescents recruited were frequency and age-matched based on age categories 10-14 and 15-19 years. Clinical history and standardized assessments were conducted. One control participant had incomplete assessment and was excluded. The primary outcome was overall QoL and key variables assessed were schooling status and household poverty. Descriptive and multivariable linear regression analysis were conducted for independent associations with overall QoL. RESULTS: Mean (SD) age at seizure onset was 8.8 (3.9) years and median (IQR) monthly seizure burden was 2 (1-4). Epilepsy was associated with living in homes with high household poverty; 95/154 (61.7%) ALE lived in the poorest homes compared to 68/153 (44.5%) of the healthy adolescents, p = 0.001. Nearly two-thirds of ALE had dropped out of school and only 48/154 (31.2%) were currently attending school compared to 136/153 (88.9%) of healthy controls, p < 0.001. QoL was lowest among ALE who never attended school (p < 0.001), with primary education (p = 0.006) compared to those with at least secondary education. Stigma scores [mean(SD)] were highest among ALE in the poorest [69.1(34.6)], and wealthy [70.2(32.2)] quintiles compared to their counterparts in poorer [61.8(31.7)], medium [68.0(32.7)] and wealthiest [61.5(33.3)] quintiles, though not statistically significant (p = 0.75). After adjusting for covariates, ALE currently attending school had higher overall QoL compared to their counterparts who never attended school (ß = 4.20, 95%CI: 0.90,7.49, p = 0.013). QoL scores were higher among ALE with ≥secondary education than those with no or primary education (ß = 10.69, 95%CI: 1.65, 19.72). CONCLUSIONS: ALE in this rural area are from the poorest households, are more likely to drop out of school and have the lowest QoL. Those with poorer seizure control are most affected. ALE should be included among vulnerable population groups and in addition to schooling, strategies for seizure control and addressing the epilepsy treatment gap in affected homes should be specifically targeted in state poverty eradication programs.

Knowledge of cervical cancer risk factors and symptoms among women in a refugee settlement: a cross-sectional study in northern Uganda.

BACKGROUND: There are limited data on awareness of cervical cancer risk factors and symptoms among refugee populations living in Uganda. In this study, we sought to determine the awareness and knowledge of cervical cancer risk factors and symptoms among women in Palabek refugee settlement, northern Uganda. METHODS: We conducted a cross-sectional study. 815 women (aged 18-60 years) were randomly selected using multistage sampling in Palabek refugee settlement. Data were collected using pre-tested, structured questionnaires. Logistic regression models were used to determine magnitudes of association between socio-demographic and health system factors, and knowledge on cervical cancer risk factors and symptoms. RESULTS: The majority of participants (53%, n = 433) were young (18-29 years), married (68%, n = 553), and did not have formal employment (93%, n = 759). Less than half (40%, n = 325) had heard of cervical cancer. Of those who had heard, most recognized multiple male sexual partners, early onset of sexual intercourse and HPV infections as risk factors for cervical cancer (93%, n = 295; 89%, n = 283; and 86%, n = 271 respectively). Median knowledge score for risk factor recognition = 7 (IQR: 3-9). Median knowledge score for symptoms recognition = 7 (IQR: 1-10). Half of women (50%, n = 409) correctly recognized 7 to 11 symptoms of cervical cancer, with vaginal bleeding between menstrual periods, pelvic pain, and vaginal bleeding during/after sexual intercourse recognized by 58, 52 and 54% respectively. Single women (OR = 0.59 (95%CI: 0.38-0.94), and women that lived farther than 1 kilo meter from nearest health facility in South Sudan (OR = 0.36-0.49 (95%CI: 0.26-0.84) were less likely to be knowledgeable of symptoms of cervical cancer. CONCLUSION: A significant proportion of women in Palabek refugee settlement had not heard about cervical cancer. Refugee health services providers could increase awareness of cervical cancer risk factors and symptoms through health education in order to promote risk reduction behaviours and guide women during symptoms appraisal. Single women and those who lived more than one kilo metre from nearest health facility in home country could be a priority group for awareness intervention in the settlement.

Traditional and Complementary Medicine Use Among Adult Cancer Patients Undergoing Conventional Treatment in Sub-Saharan Africa: A Scoping Review on the Use, Safety and Risks.

BACKGROUND: Use of traditional and complementary medicine (T&CM) is very common among patients in sub-Saharan Africa (SSA). However, there are limited data on concurrent use of T&CM with conventional cancer therapies. In this scoping review, we sought to describe the (i) prevalence of use, (ii) types of medicine, (iii) reasons for taking T&CM, (iv) current knowledge on safety and risks, (v) characteristics of adult cancer patients who use T&CM, and (vi) perceived treatment outcomes among cancer patients undergoing conventional cancer treatment in SSA. METHODS: We conducted a systematic literature search for articles published in the English language in three scientific databases (PubMed, Embase and Web of Science). We used a scoping review approach to map relevant literature on T&CM use among cancer patients undergoing conventional cancer treatments. We assessed 96 articles based on titles and abstracts, and 23 articles based on full text. Twelve articles fulfilled preset eligibility criteria. RESULTS: More than half of the included articles were from only two countries in SSA: Nigeria and Uganda. Median prevalence of use of T&CM was 60.0% (range: 14.1-79.0%). Median percent disclosure of use of T&CM to attending healthcare professionals was low at 32% (range: 15.3-85.7%). The most common reasons for non-disclosure were: the doctor did not ask, the doctor would rebuke them for using T&CM, and the doctors do not know much about T&CM and so there is no need to share the issue of use with them. T&CM used by cancer patients included herbs, healing prayers and massage. Reported reasons for use of T&CM in 8 of 12 articles included the wish to get rid of cancer symptoms, especially pain, cure cancer, improve physical and psychological well-being, treat toxicity of conventional cancer therapies and improve immunity. There were limited data on safety and risk profiles of T&CM among cancer patients in SSA. CONCLUSION: Use of traditional and complementary medicines is common among cancer patients undergoing conventional cancer treatments. Healthcare professionals caring for cancer patients ought to inquire and communicate effectively regarding the use of T&CM in order to minimize the risks of side effects from concurrent use of T&CM and biomedicines.