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BACKGROUND: Parent supportive meetings (PSM) may assist families in reducing the distress of having a child with cancer. Little is known about what parents regard as their needs for support. AIM: The purposes of this study were to investigate the needs and preferences of parents of children with cancer for PSM and its determinants. METHODS: We conducted a cross-sectional study using semi-structured questionnaires. Parents of childhood cancer patients who attended an Indonesian academic hospital were recruited between March and July 2019. RESULTS: Parents of 200 patients participated in this study (response rate 95%). Parents are interested in group (90%) and individual (84%) support to help them deal with stress related to their child’s illness. The best time to attend the supportive meeting is during treatment (53%), the best format is a drop-in basis (83%), and the best schedule is monthly (58%). Attendance is very important to: explore services and available support in the community (70%), get advice about family or relationship issues (62%), and learn how other parents cope with stress and anxiety (59%). Significantly more mothers (93%) than fathers (84%) are interested in supportive meetings (p = 0.046). More frequent meetings are preferred by low-educated (48%) than high-educated parents (31%, p = 0.015) and by younger (55%) than older parents (35%, p = 0.005). CONCLUSION: This study shows that parents of children with cancer at an Indonesian academic hospital are interested in monthly drop-in-based PSM during the whole treatment course to help them better cope with stress related to their child’s illness.

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: In our earlier published outcomes of children with acute lymphoblastic leukemia (ALL) at Moi Teaching and Referral Hospital in Kenya (MTRH), we showed low event-free survival (EFS) with high induction mortality and abandonment. Based on this observation, the team focused on strategies to reduce both causes of poor outcomes. Intervention: We dropped doxorubicin from induction therapy as the supply of L-asparaginase became reliable, improved social and financial support for insurance coverage and transportation, promptly initiated empirical antibiotics during episodes of febrile neutropenia, and enhanced the availability of blood products. Objective: Our study compared childhood ALL outcomes before (2010-2016) and after (2017-2020) modification of induction therapy, with improved social and financial support and supportive care. Methods: We reviewed the medical records of 123 children with ALL between 2017 to 2020. Their treatment results were collected and compared to those of 136 children before the (2010-2016) modification of induction therapy, with improved social and financial support. Results: Three-year EFS estimates improved from 18.2% to 40.7%. Relapse or progressive disease decreased from 26% to 16%, and abandonment from 24% to 14%. Deaths and survival through induction did not change significantly between the two periods. Children between 1-9 years and those with white blood cell (WBC) count Conclusions: Treatment abandonment and relapse decreased, and EFS increased significantly. However, strategies to improve early diagnosis and supportive care are needed to reduce induction mortality. In addition, enhanced parental education and continuous counseling are required to minimize treatment abandonment further.

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.

Western Kenya is home to approximately 24 million people, with 10 million children under the age of 15 years.Here, we describe a multidisciplinary and sequential approach to better evaluate the complex factors affecting the lack of appropriate diagnosis of pediatric cancer in Western Kenya.Internal review at a large tertiary hospital noted 200-250 patients were diagnosed annually, suggesting the remaining 75%-80% of patients go undiagnosed and do not receive treatment. Following our screening process at a local referring hospital, 41 malaria slides demonstrated both morphologic and genetic evidence of leukemia. Knowledge assessments of local providers at referring institutions suggested a lack of education and training as the factors that contribute to lower rates of diagnosis.Through a multi-step approach, our teams were better able to isolate potential issues impeding the appropriate and timely diagnosis of pediatric cancer in Kenya.

Background Paediatric oncology outreach programs have been effective development interventions to reduce inequalities in healthcare between high-income countries (HIC) versus low and middle-income countries (LMIC). But little is known about its sustainability during times of a pandemic. This study assesses the impact of COVID-19 government measures on a paediatric oncology outreach program between three large referral hospitals in the Netherlands, Indonesia and Kenya. Methods The head from each paediatric oncology outreach partner site was interviewed using a semi-structured questionnaire in June 2021. Results COVID-19 government measures impacted childhood cancer care at all three hospitals. However, disruptions in services are more prominent at partner sites in LMIC, increasing existing inequalities.The doctor from Dutch hospital, located in a HIC, reported only one disruption which is a decrease in surveillance evaluations for patients who completed cancer treatment. The doctors from Indonesian and Kenyan hospitals, located in LMIC, reported multiple disruptions. For example, reduced number of cancer diagnoses, delayed presentations, medical staff shortages, limited availability of chemotherapy and blood products, and delayed or modified treatment administration. Physical interaction between medical teams of all three participating institutions has slowed down. Hereby, adequate transfer of knowledge, skills and expertise have been adversely affected. Conclusion COVID-19 government measures have negatively impacted the intrinsic nature of the paediatric oncology outreach program. Disruptions in childhood cancer care services are more prominent at partner sites in LMIC. Government leaders and policy makers should take collateral damage of their policies and local settings into account to protect children with cancer

Background/objectives: Wilms tumor (WT) is a curable type of cancer with 5-year survival rates of over 90% in high-income countries, whereas this is less than 50% in low- and middle-income countries. We assessed treatment outcomes of children with WT treated at a large Kenyan teaching and referral hospital. Design/methods: We conducted a retrospective record review of children diagnosed with WT between 2013 and 2016. Treatment protocol consisted of 6 weeks of preoperative chemotherapy and surgery, and 4–18 weeks of postoperative chemotherapy depending on disease stage. Probability of event-free survival (pEFS) and overall survival (pOS) was assessed using Kaplan–Meier method with Cox regression analysis. Competing events were analyzed with cumulative incidences and Fine–Gray regression analysis. Results: Of the 92 diagnosed patients, 69% presented with high-stage disease. Two-year observed EFS and OS were, respectively, 43.5% and 67%. Twenty-seven percent of children died, 19% abandoned treatment, and 11% suffered from progressive or relapsed disease. Patients who were diagnosed in 2015–2016 compared to 2013–2014 showed higher pEFS. They less often had progressive or relapsed disease (p =.015) and borderline significant less often abandonment of treatment (p =.09). Twenty-nine children received radiotherapy, and 2-year pEFS in this group was 86%. Conclusion: Outcome of children with WT improved over the years despite advanced stage at presentation. Survival probabilities of patients receiving comprehensive therapy including radiation are approaching those of patients in high-income countries. Additional improvement could be achieved by ensuring that patients receive all required treatment and working on earlier diagnosis strategies.

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: Early deaths and treatment nonadherence are major reasons for low childhood acute lymphoblastic leukemia (ALL) survival in low- and middle-income countries. This study assessed treatment outcomes of children presenting with ALL and evaluated perspectives of health-care providers (HCP) on ALL treatment at a Kenyan academic hospital. Methods: This was a combined retrospective medical records and cross-sectional questionnaire study. Treatment outcomes of 136 children diagnosed with ALL between 2010 and 2016 were collected. Questionnaires were completed by 245 HCP (response rate, 86%) between September and October 2016. Results: Childhood ALL treatment outcomes were death (30%), progressive or relapsed disease (26%), abandonment (24%), and event-free survival (20%). Of all deaths, 80% were early deaths (prior or during induction), whereas 20% occurred in remission. Probability of event-free survival at three years was 18%. Only 57% of HCP believed childhood ALL can be cured, with more doctors (96%) than other HCP (45%) believing in curability of ALL (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 Emphasizing timely diagnosis and treatment of cancer are important themes in pediatric cancer management, as delays adversely impact survival. This study explores various delay types among children with cancer and determines factors that influence delays. Methods This cross-sectional study was conducted at an Indonesian academic hospital. Parents of newly diagnosed patients were interviewed between October 2013 and September 2014 using semistructured questionnaires. Patient, physician, diagnosis, treatment, healthcare system (HCS), and total delay were analyzed. Results Parents of 145 children (response rate 89%) with cancer were interviewed. Median total delay was 70 days (range 5–4,055). Patient delay (median 5 days, range 0–189) was significantly shorter than HCS delay (median 49 days, range 4–4,025, P < 0.001). Diagnosis delay (median 58 days, range 3–4,015) was significantly longer than treatment delay (median 3 days, range 1–89, P < 0.001). Older age at diagnosis significantly lengthened patient delay (P = 0.044). Using alternative treatment was associated with significantly longer patient and total delay (P = 0.025, 0.024, respectively). Cancer type significantly influenced physician, diagnosis, treatment, HCS, and total delay (P = 0.001, P = 0.004, P < 0.001, P < 0.001, P < 0.001, respectively). Neurological tumors had the longest delays, whereas hematological tumors had the shortest. Sex, parents’ education or income level, disease stage at diagnosis, health insurance status, distance from hospital, and first attended health-facility type did not significantly impact the length of any delay type. Conclusions Healthcare providers need training to improve recognition of cancer symptoms and speed up subsequent diagnostic processes. Using alternative treatment increased patient and total delays. Community campaigns to encourage families to seek conventional cancer treatments are recommended.

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.

Background Use of complementary and alternative medicine (CAM) is common among patients with childhood cancer. Health-care providers (HCP) should address this need properly. Geographical and cultural differences seem likely. This study explores perspectives on CAM of HCP involved in the care of children with cancer in Netherlands and Indonesia. Health beliefs, components of CAM, encouraging or discouraging CAM, and knowledge about CAM were assessed. Procedure We conducted a cross-sectional study using semi-structured questionnaires at a Dutch and Indonesian academic hospital. Results A total of 342 HCP participated: 119 Dutch (response rate 80%) and 223 Indonesian (response rate 87%). Chemotherapy can cure cancer according to more Dutch than Indonesian HCP (87% vs. 53% respectively, P

At the government, hospital, and health-care provider level, corruption plays a major role in health-care systems in Africa. The returns on health investments of international financial institutions, health organisations, and donors might be very low when mismanagement and dysfunctional structures of health-care systems are not addressed. More funding might even aggravate corruption. We discuss corruption and its effects on cancer care within the African health-care system in a sociocultural context. The contribution of high-income countries in stimulating corruption is also described. Corrupt African governments cannot be expected to take the initiative to eradicate corruption. Therefore, international financial institutions, health organisations, and financial donors should use their power to demand policy reforms of health-care systems in Africa troubled by the issue of corruption. These modifications will ameliorate the access and quality of cancer care for patients across the continent, and ultimately improve the outcome of health care to all patients.

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.

10032 Background: Burkitt Lymphoma (BL) is a common pediatric cancer in sub-Saharan Africa. Despite advances in care, prognosis is poor. The BL treatment protocol at our center in Kenya used since 2010, had a one-year survival of 29% (Martijn et al. BMJ Paed Open 2017). We hypothesized that financial burdens and delays in start of therapy impact outcomes. Methods: Our trial tested interventions aimed to: 1) Shorten time from presentation to start of treatment to improve survival; and 2) Support families during therapy to reduce abandonment. Initial eligibility included clinical suspicion of BL in a child 0-13 years of age. Patients with confirmed diagnosis of a mature B-cell lymphoma received support to complete therapy. Children with prior treatment of cancer were excluded. The trial was approved by human protection boards in Kenya and Indiana and consent was obtained prior to study entry. We enrolled 96 children with possible BL. Study personnel expedited routing of tissue samples to laboratories. Touch preps or smears were stained with Giemsa and reviewed by pathologists. Fresh tissue from all sources was used for flow cytometry. Tissue from core needle or incisional biopsies was processed for routine and immunohistochemical staining. Of 96 patients, 43 had BL confirmed by pathologic studies and were treated with combination chemotherapy given over 25 weeks. We paid families for transport costs for care, called after missed appointments, and provided direct monetary support (~$200 USD) for the 200 days children were on treatment. Results: Facilitating the biopsy shortened, by 3 days, the median time from admission to initiation of therapy for BL, because families did not need to raise funds for testing. Monetary support reduced abandonment of treatment by patients. Only 2 of 43 (5%) patients abandoned therapy, compared to abandonment by 22 of a cohort of 63 (35%) patients treated previously (p < 0.001). The combination of rapid diagnosis, early therapy, and financial support and communication with families improved event free survival of children with BL to 50% at 1 year (p = 0.045). Conclusions: Simple interventions to improve efficiency of diagnosis and reduce abandonment leads to improved outcomes for children with BL in Kenya.

Complementary alternative medicine (CAM) use in children with cancer is widespread. Health care providers (HCP) need to acknowledge and address this need. This study explored and compared perspectives on CAM of HCP and parents of young patients with cancer in Indonesia.We conducted a crosssectional study using semistructured questionnaires in HCP and parents of childhood cancer patients at an Indonesian academic hospital.A total of 351 respondents participated: 175 HCP (response rate 80%) and 176 parents (response rate 80%). Parents were more likely than HCP to think that chemotherapy can cure cancer (80% compared to 69%, P=0.013). Nearly half of all parents (46%) and HCP (45%) doubted whether CAM can cure cancer. Parents were more likely than HCP to think that CAM can be helpful in childhood cancer treatment (54% compared to 35%, P=0.003). The most recommended CAM by HCP was selfprayer (93%). Reasons for recommending CAM were: hope for improvement of the child's condition (48%), patient wants to stop treatment (42%). Most discouraged CAM by HCP was by oldsmart people (70%), the reasons being: lack of evidence for usefulness (77%), lack of CAM knowledge (75%). The proportion thinking that patients were unlikely to raise the CAM topic if they perceived that doctors were skeptical was higher in parents than in HCP (52% versus 1%) (P0.001). Most HCP (71%) and parents (77%) acknowledged that their knowledge about safety and efficacy of CAM was inadequate (P=ns). The proportion that wanted to learn or read more about CAM was higher among parents than HCP (48% compared to 31%, P=0.002).HCP and parents have different perspectives on CAM use in children with cancer. HCP should enhance their CAM knowledge and encourage open communication about CAM with parents. If doctors' skepticism is perceived, parents are unlikely to raise CAM as a topic.

Background: This study assessed parental experiences with chemotherapy-induced alopecia among children with cancer treated at an Indonesian academic hospital. Materials and Methods: Fifty parents of childhood cancer patients were interviewed using semi-structured questionnaires. Results: The moment that hair fell out was the moment that parents (84%) had to admit their child had cancer. Alopecia was a traumatizing painful experience (46%). Active strategies to hide alopecia, mainly hats, were used by 66% of children, while 34% never covered their bald head. If money had not been an issue, 40% would use another strategy. Alopecia made children limit outdoor daily activities (78%) and engagement with others (60%). Significantly more children from high-educated (95%) than low-educated (60%) parents received sympathy from other people (P=0.012). Significantly more Christian (29%) than Muslim (0%) families confirmed that alopecia lowered the quality of life (P=0.046). Most parents (82%) had no prior plans about alopecia management, yet for significantly more girls (26%) than boys (0%) such plans existed (P=0.044). Parents received most information about alopecia from other parents (66%). Parents (92%) needed more alopecia education from doctors. Of all school-attending children, 53% were bullied and 47% did not want to attend school due to alopecia. Significantly more high-educated than low-educated families received pity from teachers and pupils (94% vs. 0%, P=0.004), and acceptance by pupils (81% vs. 0%, P=0.021). Conclusions: Alopecia is a severe, far-stretching side-effect of chemotherapy with physical, psychological and social consequences for children and parents. Parents should be better informed about occurrence and impact of alopecia. Extra attention is required to facilitate children's return to school. Health- care providers should facilitate optimal supportive care through open dialogue and provision of educational materials for parents, children and their community.

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.

Use of complementary and alternative medicine (CAM) is common among patients with childhood cancer. Health-care providers (HCP) should address this need properly. Geographical and cultural differences seem likely. This study explores perspectives on CAM of HCP involved in the care of children with cancer in Netherlands and Indonesia. Health beliefs, components of CAM, encouraging or discouraging CAM, and knowledge about CAM were assessed.We conducted a cross-sectional study using semi-structured questionnaires at a Dutch and Indonesian academic hospital.A total of 342 HCP participated: 119 Dutch (response rate 80%) and 223 Indonesian (response rate 87%). Chemotherapy can cure cancer according to more Dutch than Indonesian HCP (87% vs. 53% respectively, P 0.001). Combination of chemotherapy and CAM is the best way to cure cancer according to more Indonesian than Dutch HCP (45% vs. 25%, P 0.001). Dutch and Indonesian HCP recommend and discourage CAM use differently. Most Dutch (77%) and Indonesian HCP (84%) consider their knowledge about CAM to be inadequate (P = ns). Fewer Dutch doctors than other HCP want to learn more about CAM (51% vs. 76%, P = 0.007), whereas there is no significant difference in eagerness to learn about CAM between Indonesian doctors (64%) and other HCP (72%).Indonesian HCP have more positive views about CAM than their Dutch colleagues. Both Dutch and Indonesian HCP consider their knowledge about CAM to be inadequate. Therefore, education programs about CAM tailored to the needs of HCP are recommended, knowing that CAM is used frequently.

Our study explores socioeconomic, treatment-related, and psychological experiences of parents during cancer treatment of their children at an academic hospital in Kenya.This cross-sectional study used semi-structured questionnaires. Parents whose children came for cancer treatment consecutively between November 2012 and April 2013 were interviewed.Between 2012 and 2013, 115 oncology patients attended the hospital and 75 families (response rate 65 %) were interviewed. Cancer treatment resulted in financial difficulties (89 %). More information about cancer and treatment was required (88 %). More contact with doctors was needed (83 %). At diagnosis, cancer was perceived as curable (63 %). However, parents were told by health-care providers that most children with cancer die (49 %). Parents had difficulties with understanding doctors' vocabulary (48 %). Common reasons to miss hospital appointments were travel costs (52 %) and hospital costs (28 %). Parents (95 %) used complementary alternative treatment (CAM) for their children. Health-care providers told parents not to use CAM (49 %). Parents had not discussed their CAM use with doctors (71 %). Community members isolated families because their child had cancer (25 %), believed that child was bewitched (57 %), advised to use CAM (61 %), and stopped conventional treatment (45 %). Some families (15 %) never disclosed the child's illness to community members. Parents shared experiences with other parents at the ward (97 %) and would otherwise not understand the disease and its treatment (87 %).Parents suffer financial hardships and are dissatisfied with doctors' communication regarding their children's condition. CAM is very commonly used. Doctors need to improve their communication skills and discuss CAM more openly. Cancer programs should include more support for parents: financial assistance, a facility where parents and children can stay during the course of therapy, and parent support groups.

Hospital detention practices can be defined as refusal to release living patients after medical discharge is clinically indicated, or refusal to release bodies of deceased patients, when families are unable to pay hospital bills. Each additional day for which patients are detained adds to their bills, increasingly hindering families’ ability to obtain patients’ release. Patients are sometimes detained in hospitals, or bodies detained in mortuaries, for months. Occasionally, patients are completely left behind in hospitals when families are unable to pay. Unclaimed patients’ bodies might be disposed of in mass graves. The problem’s magnitude is unknown, but is probably more widespread than is documented. Hospital detention has been reported by human rights organisations, clinicians, journalists, and laypeople in Africa, Asia, Latin America, and eastern Europe. The problem aff ects children and adults with acute disorders (eg, people involved in road accidents and women with birth complications) and chronic diseases (eg, cancer or HIV/AIDS). Reports do not have consistent terminology to enable comparisons of studies worldwide or to eff ectively unite forces. We have formed the International Society of Paediatric Oncology and Paediatric Oncology in Developing Countries (SIOP PODC) Global Taskforce on Hospital Detention Practices, with the following objectives: to augment critical awareness; to introduce consistent terminology; to help to map global scope reliably; to elucidate adverse consequences; to address root causes; and to identify and support implementation of eff ective solutions to end hospital detention practices. The Taskforce endorses the following core statements related to each objective. Patients’ detention violates international human rights, including the right to not be imprisoned as a debtor and to have access to medical care. Recommended terminology includes “hospital detention practices” and “detained patients”. The term “detention” minimises confusion with positive health-care retention in medical literature. The term “practices” more accurately describes reality than does “policies”. Although hospital detention is often not the offi cial policy publicly defended by governments, it might be a wide spread unofficial practice. To map the global scope, the Taskforce calls on professionals and advocates to report hospital detention in scientifi c journals, media, and public venues. Recognition of adverse consequences is crucial. Fear of detention might prevent or delay conventional medical help-seeking, and encourages abandonment of potentially curative treatment after patients’ release. Progressive or relapsed disease and unnecessary death often result. Detention aggravates hospital overcrowding, increases infection risk, and denies schooling to children. Hospital detention is often the result of mismanagement, corruption, dysfunctional health-care system structures, inadequate health insurance coverage, and unfair waiver procedures, warranting attention. Advocacy by stakeholders is urgently needed (panel). Our Taskforce endorses this position statement in the conviction that detention of patients is unethical and inhumane, and must end.