Search

Introduction: The number of children surviving cancer in Africa is increasing. Knowledge about late effects of survivors is lacking. Our study maps literature regarding late effects of childhood cancer survivors in Africa. Methods: Scoping review was performed following JBI-guidelines. Systematic literature search was conducted in: Medline, Embase, African Index Medicus, Web of Science, Scopus, Psycinfo. Titles and abstracts were screened by two reviewers, followed by full-text analysis by the lead reviewer. Results: Sixty-eight studies were included for content analysis. Studies originated from 10 of 54 African countries. Most studies had retrospective study design, 2–5 years follow-up, solely chemotherapy as treatment modality, Egypt as country of origin. Fifty-three studies described physical, and seventeen studies described psychosocial late effects. Conclusion: Literature concerning late effects is available from a limited number of African countries. Psychosocial domain lacks attention compared to the physical domain. More countries should report on this topic to prevent, identify and monitor late effects.

Background: Pediatric acute myeloid leukemia (AML) is a challenging disease to treat in low- and middle-income countries (LMICs). Literature suggests that survival in LMICs is poorer compared with survival in high-income countries (HICs). Aims: This study evaluates the outcomes of Kenyan children with AML and the impact of sociodemographic and clinical characteristics on outcome. Methods and Results: A retrospective medical records study was performed at Moi Teaching and Referral Hospital (MTRH) in Eldoret, Kenya, between January 2010 and December 2018. Sociodemographic and clinical characteristics, and treatment outcomes were evaluated. Chemotherapy included two “3 + 7” induction courses with doxorubicin and cytarabine and two “3 + 5” consolidation courses with etoposide and cytarabine. Supportive care included antimicrobial prophylaxis with cotrimoxazole and fluconazole, and blood products, if available. Seventy-three children with AML were included. The median duration of symptoms before admission at MTRH was 1 month. The median time from admission at MTRH to diagnosis was 6 days and to the start of AML treatment 16 days. Out of the 55 children who were started on chemotherapy, 18 (33%) achieved complete remission, of whom 10 (56%) relapsed. The abandonment rate was 22% and the early death rate was 46%. The 2-year probabilities of event-free survival and overall survival were 4% and 7%, respectively. None of the sociodemographic and clinical characteristics were significantly associated with outcome. Conclusion: Survival of Kenyan children with AML is dismal and considerably lower compared with survival in HICs. Strategies to improve survival should be put in place including better supportive care, optimization of the treatment protocol, and reduction of the abandonment rate and time lag to diagnosis with sooner start of treatment.

Background: Although survival rates for retinoblastoma (RB) are over 95% in high-income countries, its high mortality rate in low and middle-income countries remains a great concern. Few studies investigated treatment outcome and factors contributing to RB survival in these latter settings. Aims of this study are to determine treatment outcome of Indonesian children diagnosed with RB and to explore factors predictive of treatment outcome. Methods: This study was a retrospective medical records review combined with an illustrative case report. Children newly diagnosed with RB between January 2011 and December 2016 at a tertiary care referral hospital in Indonesia were included. A home visit was conducted to perform an in-depth interview with a mother of two children affected by RB. Results: Of all 61 children with RB, 39% abandoned treatment, 21% died, 20% had progressive or relapsed disease and 20% event-free survival. Progressive or relapsed disease was more common in older (≥ 2 years at diagnosis, 29%) than young (

Background: Survival of childhood cancer in high-income countries is approximately 80%, whereas in low-income countries, it is less than 10%. Limited access to health insurance in low-income settings may contribute to poor survival rates. This study evaluates the influence of health insurance status on childhood cancer treatment in a Kenyan academic hospital. Methods: This was a retrospective study. All children diagnosed with a malignancy from 2010 until 2012 were included. Data on treatment outcomes and health insurance status at diagnosis were abstracted from patient charts. Results: Of 280 patients, 34% abandoned treatment, 19% died, and 18% had progressive or relapsed disease resulting in 29% event-free survival. The majority of patients (65%) did not have health insurance at diagnosis. Treatment results differed significantly between patients with different health insurance status at diagnosis; 37% of uninsured versus 28% of insured patients abandoned treatment, and 24% of uninsured versus 37% of insured patients had event-free survival. The event-free survival estimate was significantly higher for patients with health insurance at diagnosis compared with those without (P = 0.004). Of patients without health insurance at diagnosis, 77% enrolled during treatment. Among those patients who later enrolled in health insurance, frequency of progressive or relapsed disease and deaths was significantly lower (P = 0.013, P < 0.001, respectively), while the event-free survival estimate was significantly higher (P < 0.001) compared with those who never enrolled. Conclusion: Childhood cancer event-free survival was 29% at a Kenyan hospital. Children without health insurance had significant lower chance of event-free survival. Childhood cancer treatment outcomes could be ameliorated by strategies that prevent treatment abandonment and improve access to health insurance.

Background: Starting from 2014, the Indonesian government has implemented Universal Health Coverage (UHC) with the aim to make healthcare services accessible and affordable to all Indonesian citizens. A major reason for childhood cancer treatment failure in low- and middle-income countries, particularly among families with low socioeconomic status (SES), is abandonment of expensive cancer treatment. Our study compared childhood cancer treatment outcomes of the overall, low, and high SES population before and after introduction of UHC at a large Indonesian academic hospital. Methods: Medical records of 1040 patients diagnosed with childhood cancer before (2011-2013, n = 506) and after (2014-2016, n = 534) introduction of UHC were abstracted retrospectively. Data on treatment outcome, SES, and health-insurance status at diagnosis were obtained. Findings: After introduction of UHC, the number of insured patients increased from 38% to 82% (P

Background: Improving the quality of care in resource limited settings through an outreach program is challenging. Teleconferencing is increasingly being used and considered a breakthrough in medical education. We evaluated adherence with childhood oncology-hematology teleconferences between two academic hospitals in Indonesia and Netherlands. Methods: Teleconferences held during 12 months between an Indonesian and a Dutch academic hospital were evaluated using a standardized form. Both adherence with diagnostic and treatment advices for individual patients were explored in medical records. Results: During 38 teleconferences, difficult cases of 53 children were discussed by Dutch pediatric oncologists and Indonesian residents. Dutch oncologists advised diagnostic adjustments in 41 cases (77%). Most common diagnostic advices were: laboratory tests (68%), imaging (54%), physical examination (41%). Diagnostic advices were not adhered to in 12 children (30%). Common reasons for non-adherence were: not applicable in middle-income setting (25%), disagreement with Dutch advice (17%), CT scan is out of order (17%), patient died (17%). Dutch oncologists advised treatment adjustments in 40 cases (75%). Most common treatment advices were: change of protocol (38%), nutritional support (30%), prevention of tumor lysis syndrome (20%). Treatment advices were not adhered to in 9 children (22%). Common reasons for non-adherence were: poor condition of child (44%), not applicable in middle-income setting (22%), patient died (22%), disagreement with Dutch advice (11%). Twenty-four children (45%) died after teleconference was held. Twenty-nine children (55%) were alive. These children abandoned (38%), completed (31%) or were still under treatment (31%). Conclusion: Through teleconferencing, knowledge between high and low or middle-income countries can be shared to improve patient care. Locally applicable advices are required. Active participation by pediatric oncologists at both partner sites is recommended. Keywords: Outreach program, Childhood oncology-hematology, Teleconference, Adherence

The United Nations and WHO have summoned governments from low-income and middle-income countries to institute universal health coverage and thereby improve their population’s healthcare access and outcomes. Until now, few countries responded favourably to this international plea. The HIV/AIDS epidemic, a major global public health challenge, resulted in over 11 million orphans in sub-Saharan Africa. Extended families have taken responsibility for more than 90% of these children. HIV orphans are likely to be poorer and less healthy. Burkitt lymphoma is the most common childhood cancer in sub-Saharan Africa. If orphans need lifesaving chemotherapy, appointing legal guardians becomes necessary to access health insurance. However, rules and regulations involved may be unclear and costly. This hinders its access for poor families who need it most. Uninsured children risk hospital detention over unpaid medical bills and have lower survival. Our case report depicts the quest for health insurance coverage of two HIV orphans with Burkitt lymphoma in Kenya.

Objectives: Communication about Traditional Complementary and Alternative Medicine (TCAM) use is important in both Western and Eastern countries to prevent interference with conventional cancer treatment. This study compares communication about TCAM of health-care providers (HCP) involved in childhood cancer care in Netherlands and Indonesia. Method: Cross-sectional study at Dutch and Indonesian academic hospital using semi-structured questionnaires. Results: Overall 342 HCP participated: 119 Dutch and 223 Indonesian HCP (response rate 80% and 87%). HCP have negative perspectives about TCAM according to more Dutch (80%) than Indonesian (42%) HCP (p < 0.001). More Dutch (97%) HCP think cancer patients use TCAM than Indonesian (75%) HCP (p = 0.001). Less Dutch (36%) than Indonesian (65%) HCP ask parents, during routine history taking, if they use TCAM in their child (p < 0.001). In both settings, most HCP (98%, 90% respectively) consider it important that parents inform them if their child uses TCAM (p = 0.004). Parents do not disclose their TCAM use to doctors according to 75% of Dutch and 84% of Indonesian HCP (p = ns). Parents are afraid of receiving less care from doctors if they disclose their interest in or use of TCAM according to more Indonesian (74%) than Dutch (42%) HCP (p < 0.001). Parents actually receive less care from doctors if they disclose their interest in or use of TCAM according to more Indonesian (40%) than Dutch (2%) HCP (p < 0.001). More Dutch (46%) than Indonesian (30%) HCP never openly discuss TCAM with parents (p = 0.002). Conclusion: Dutch HCP have more negative perspectives and communicate less openly about TCAM with parents than Indonesian HCP. In both settings HCP realize that their patients use TCAM and do not disclose this. Doctors need to initiate and facilitate open discussions about TCAM with parents, without retributing families after TCAM disclosure.

Numerous investigations demonstrate that the problem of corruption in the health sector is enormous and has grave negative consequences for patients. Nevertheless, the problem of corruption in health systems is far from eminent in the international health policy debate. Hutchinson, Balabanova, and McKee have identifed in their Editorial five reasons why the health policy community has been reluctant to talk about it: (1) Problem of defining corruption; (2) Some corrupt practices are actually ways of making dysfunctional systems work; (3) The serious challenges to researching corruption; (4) Concerns that focus on corruption is a form of victim blaming that ignores larger issues; and (5) Lack of evidence about what works to tackle it. In this commentary, we pay a closer and critical look at these five excuses for doing nothing. We conclude that the vast majority of the world population, being the poor in low and middle-income countries (LMICs) who disproportionately suffer from the problem of corruption in health systems, need good people with high moral and ethical principles who have the courage to disregard these five reasons. The poor need good people who understand that it is crucial to first acknowledge this problem, despite the obvious uncertainties involved, before you can change it. The poor therefore need good editors, good policy-makers, good managers, and good clinicians. We agree with the authors that we first need to talk about corruption. But above all, we need good people who are subsequently willing to walk the talk.

Purpose: Traditional and complementary alternative medicine (TCAM) use is rising globally. In many African countries, TCAM has been a way of life as the first and last resort remedy for many ailments, including cancer. Health-care providers (HCP) should address this need properly. This study explores HCP perspectives on TCAM in Kenya. Methods: This cross-sectional study used questionnaires. HCP involved in the care of children with cancer at a Kenyan academic hospital were interviewed. Results: In total, 155 HCP (response rate 79%) participated. Only 18% of HCP were positive about TCAM use. However, most HCP (85%) use TCAM themselves. More doctors (90%) than other HCP (56%) think that chemotherapy can cure cancer (P < 0.001).Thirty-three percent of HCP believe a combination of TCAM and chemotherapy is the best way to cure cancer, while 56% think that usefulness of TCAM is underestimated in conventional medicine. Self-prayer is regarded as most effective (58%) and safe (76%). Most harmful is witchcraft (80%). Most HCP (71%) think their knowledge about safety and efficacy of TCAM is inadequate. HCP think that their cancer patients use TCAM (97%) and that it is important that parents inform them about this (97%). However, only 5% of HCP always openly discuss TCAM with parents. Conclusions: HCP need to improve their knowledge of TCAM and facilitate open communication about TCAM with families so parents feel safe to discuss their interest in it.

Background Vincristine (VCR) is a critical part of treatment in pediatric malignancies and is associated with dose-dependent peripheral neuropathy (vincristine-induced peripheral neuropathy [VIPN]). Our previous findings show VCR metabolism is regulated by the CYP3A5 gene. Individuals who are low CYP3A5 expressers metabolize VCR slower and experience more severe VIPN as compared to high expressers. Preliminary observations suggest that Caucasians experience more severe VIPN as compared to nonCaucasians. Procedure Kenyan children with cancer who were undergoing treatment including VCR were recruited for a prospective cohort study. Patients received IV VCR 2 mg/m2/dose with a maximum dose of 2.5 mg as part of standard treatment protocols. VCR pharmacokinetics (PK) sampling was collected via dried blood spot cards and genotyping was conducted for common functional variants in CYP3A5, multi-drug resistance 1 (MDR1), and microtubule-associated protein tau (MAPT). VIPN was assessed using five neuropathy tools. Results The majority of subjects (91%) were CYP3A5 high-expresser genotype. CYP3A5 low-expresser genotype subjects had a significantly higher dose and body surface area normalized area under the curve than CYP3A5 high-expresser genotype subjects (0.28 ± 0.15 hr·m2/l vs. 0.15 ± 0.011 hr·m2/l, P = 0.027). Regardless of which assessment tool was utilized, minimal neuropathy was detected in this cohort. There was no difference in the presence or severity of neuropathy assessed between CYP3A5 high- and low-expresser genotype groups. Conclusion Genetic factors are associated with VCR PK. Due to the minimal neuropathy observed in this cohort, there was no demonstrable association between genetic factors or VCR PK with development of VIPN. Further studies are needed to determine the role of genetic factors in optimizing dosing of VCR for maximal benefit.

Purpose Wilms tumor is the commonest renal malignancy in childhood. Survival in high-income countries is approximately 90%, whereas in low-income countries, it is less than 50%. This study assessed treatment outcomes of patients with Wilms tumor at a Kenyan academic hospital. Patients and Methods We conducted a retrospective medical record review of all children diagnosed with Wilms tumor between 2010 and 2012. Data on treatment outcomes and various sociodemographic and clinical characteristics were collected. Results Of the 39 patients with Wilms tumor, 41% had event-free survival, 31% abandoned treatment, 23% died, and 5% had progressive or relapsed disease. Most patients presented at an advanced stage: stage I (0%), II (7%), III (43%), IV (40%), or V (10%). The most likely treatment outcome in patients with low-stage (I to III) disease was event-free survival (67%), whereas in those with high-stage (IV to V) disease, it was death (40%). No deaths or instances of progressive or relapsed disease were recorded among patients with low-stage disease; their only reason for treatment failure was abandonment of treatment. Stage of disease significantly affected treatment outcomes ( P = .014) and event-free survival estimates ( P < .001). Age at diagnosis, sex, duration of symptoms, distance to hospital, and health insurance status did not statistically significantly influence treatment outcomes or event-free survival estimates. Conclusion Survival of patients with Wilms tumor in Kenya is lower compared with that in high-income countries. Treatment abandonment is the most common cause of treatment failure. Stage of disease at diagnosis statistically significantly affects treatment outcomes and survival.

Objective: Non-Hodgkin's lymphoma (NHL) is the most common childhood malignancy in sub-Saharan Africa. Survival rates for NHL are higher than 80% in high-income countries.This study explores treatment outcomes of children with NHL in Kenya, a sub-Saharan low-income country, and the association between health insurance status at diagnosis and treatment outcomes.Design: This was a retrospective medical records study. All children diagnosed with NHL in 2010, 2011 and 2012 were included. Data on treatment outcomes and health insurance status at diagnosis were collected.Results: Of all 63 patients with NHL, 35% abandoned treatment, 22% had progressive or relapsed disease, 14% died and 29% had event-free survival. Most patients (73%) had no health insurance at diagnosis. Treatment outcomes in children with or without health insurance at diagnosis differed significantly (p=0.005). The most likely treatment outcome in children with health insurance at diagnosis was event-free survival (53%), whereas in children without health insurance at diagnosis it was abandonment of treatment (44%). Crude HR for treatment failure was 3.1 (95% CI 1.41 to 6.60, p=0.005) for uninsured versus insured children. The event-free survival estimate was significantly higher in children with health insurance at diagnosis than in patients without health insurance at diagnosis (p=0.003). Stage of disease at diagnosis was identified as a confounder of this association (adjusted HR=2.4, 95% CI 0.95 to 6.12, p=0.063).Conclusions: Survival of children with NHL in Kenya is much lower compared with high-income countries. Abandonment of treatment is the most common cause of treatment failure. Health insurance at diagnosis was associated with better treatment outcomes and survival.

Early diagnosis and start of treatment are fundamental goals in cancer care. This study determines the time lag and the factors that influence the time to diagnosis and start of treatment. Study participants were parents of childhood cancer patients diagnosed between August 2013 and July 2014 in a hospital in Kenya. Patient, physician, diagnosis, treatment, health care system, and total delay were explored using a questionnaire. Demographic and medical data were collected from the patients' medical records. Parents of 99 childhood cancer patients were interviewed (response rate: 80%). Median total delay was 102 (9-1021) days. Median patient delay (4 days) was significantly shorter than health care system delay (median 87 days; P < .001). Diagnosis delay (median 94 days) was significantly longer than treatment delay (median 6 days; P < .001). days. Lack of health insurance at diagnosis and use of alternative medicine before attending conventional health services were associated with a significantly longer patient delay (P = .041 and P = .017, respectively). The type of cancer had a significant effect on treatment delay (P = .020). The type of health facility attended affected only patient delay (P = .03). Gender, age at diagnosis, stage of disease, parents' education level or income, and distance from hospital did not have a significant effect on the length of any type of delay. Training on childhood cancer should be included in the curricula for medical training institutes. In-service workshops should be held for the health workers already working. Families must be obligated to get health insurance. Families should be encourage to attend conventional health facilities and informed on symptoms of cancer through mass media.

Background: The influence of parental socio-economic status on childhood cancer treatment outcome in low-income countries has not been sufficiently investigated. Our study examined this influence and explored parental experiences during cancer treatment of their children in an Indonesian academic hospital. Materials and Methods: Medical charts of 145 children diagnosed with cancer between 1999 and 2009 were reviewed retrospectively. From October 2011 until January 2012, 40 caretakers were interviewed using semi-structured questionnaires. Results: Of all patients, 48% abandoned treatment, 34% experienced death, 9% had progressive/relapsed disease, and 9% overall event-free survival. Prosperous patients had better treatment outcome than poor patients (P

Background Most studies on Health-related Quality of Life (HRQOL) in children with cancer were conducted in developed countries. The aims of this study were to assess the HRQOL in childhood acute lymphoblastic leukemia (ALL) patients in Indonesia and to assess the influence of demographic and medical characteristics on HRQOL. Methods After cultural linguistic validation, a cross-sectional study of HRQOL was conducted with childhood ALL patients and their guardians in various phases of treatment using the Pediatric Quality of Life Inventory™ (PedsQL™) 4.0 Generic Core Scale and the Pediatric Quality of Life Inventory™ (PedsQL™) 3.0 Cancer Module. Results Ninety-eight guardians and 55 patients participated. The internal consistency of both scales ranged from 0.57 to 0.92. HRQOL of Indonesian patients was comparable with those in developed countries. There were moderate to good correlations between self-reports and proxy-reports, however guardians tended to report worse HRQOL than patients. Children of the 2–5 year-group significantly had more problems in procedural anxiety, treatment anxiety and communication subscales than in older groups (p < 0.05). In the non-intensive phase HRQOL was significantly better than in the intensive phase, both in patient self-reports and proxy-reports. Conclusion Younger children had more problems in procedural anxiety, treatment anxiety and communication subscales. Therefore, special care during intervention procedures is needed to promote their normal development. Psychosocial support should be provided to children and their parents to facilitate their coping with disease and its treatment.