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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: 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.

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.

Background The principal reason for childhood cancer treatment failure in low-income countries is treatment abandonment, the most severe form of nonadherence. Two often neglected factors that may contribute to treatment abandonment are as follows: (a) lack of information and guidance by doctors, along with the negative beliefs of family and friends advising parents, which contributes to misconceptions regarding cancer and its treatment, and (b) a widespread policy in public hospitals by which children are retained after doctor's discharge until medical bills are settled. Objective This study explored parents' experiences with hospital retention policies in a Kenyan academic hospital and the impact of attitudes of family and friends on parents' decisions about continuing cancer treatment for their child. Methods Home visits were conducted to interview parents of childhood cancer patients who had been diagnosed between 2007 and 2009 and who had abandoned cancer treatment. Results Retrospective chart review revealed 98 children diagnosed between 2007 and 2009 whose parents had made the decisions to abandon treatment. During 2011–2012, 53 families (54%) could be reached, and 46 (87%) of these agreed to be interviewed. Parents reported the attitudes of community members (grandparents, relatives, friends, villagers, and church members); 61% believed that the child had been bewitched by some individual, and 74% advised parents to seek alternative treatment or advised them to stop medical treatment (54%). Parents also reported that they were influenced by discussions with other parents who had a child being treated, including that their child's life was in God's hands (87%), the trauma to the child and family of forced hospital stays (84%), the importance of completing treatment (81%), the financial burden of treatment (77%), and the incurability of cancer (74%). These discussions influenced their perceptions of cancer treatment and its usefulness (65%). Thirty-six families (78%) had no health insurance, and 19 of these parents (53%) could not pay their medical bills and were not allowed to take their child home when treatment ended. Parents reported feelings of desperation (95%), powerlessness (95%), and sadness (84%) and that their child has been imprisoned (80%), during the period of retention. The majority of parents (87%) felt that hospital retention of children must cease. Conclusions The attitudes and beliefs of parents of children with cancer are impacted by those close to them and their community and may influence their perceptions of cancer treatment and decisions to stop treatment. Hospital retention policies are highly distressing for parents and may contribute to both treatment delays and treatment abandonment. These factors jeopardize treatment outcomes for young patients and require attention and modification. Copyright © 2014 John Wiley & Sons, Ltd.

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.

Increased awareness of cancer as a health crisis facing less developed healthcare systems has led to recent calls for increased investment in cancer care infrastructure in low resource settings. However, operational descriptions of well-functioning cancer care systems in resource-constrained settings are limited. AMPATH-Oncology is the result of collaboration between North American, European, and Kenyan partners to develop a comprehensive cancer care model that supports screening services, cancer treatment, and palliative care. This article describes the approach taken by the AMPATH-Oncology program to deliver cancer care in a resource-constrained setting. A review of other ‘high-income – low-income' collaborative models identifies successful strategies to implement cancer care in low resource environments.

Background. Event-free survival of pediatric patients with acute lymphoblastic leukemia (ALL) in Yogyakarta, Indonesia was low (20%). The aim of the study was to evaluate the effectiveness of using amedicationdiary-bookonthetreatmentoutcomeofchildhoodALL. Procedure. A randomized study was conducted with 109 pediatric patients with ALL in a pediatric oncology center in Yogyakarta, Indonesia.Both interventionandcontrolgroupsreceiveda structured parental education program and donated chemotherapy. The intervention group received a medication diary-book to remind parents and families to take oral chemotherapy and present for scheduled appointments or admissions. Event-free survival estimate (EFS) at 3 years was assessed. Results. Among pediatric patients with ALL with highly educated mothers (senior high school or higher), the EFS-estimate at 3 years of the intervention group was significantly higher than the EFS-estimate at 3 years of the control group (62% vs. 29%, P ¼0.04). Among pediatric patients with ALL with loweducated mothers, no significant difference was found in the EFSestimates at 3 years betweenthe intervention and control group(26% vs. 18%, P ¼0.86). Conclusions. We conclude that a medication diary-book might be useful to improve the survival of pediatric patients with ALL in resource-limited settings, particularly in patients with highly educated mothers. Pediatr Blood Cancer 2013;60:1593‐ 1597. # 2013 Wiley Periodicals, Inc.

Background Childhood cancer survival in low-income countries is low. Objective Our study investigated health-care providers' perspectives on childhood cancer treatment in Indonesia. Their health beliefs and attitudes toward parental financial difficulties, protocol adherence, parental education, and communication were explored. Methods A self-administered questionnaire was filled in by 222 health-care providers (156 doctors, 51 nurses, 6 social workers, 9 administrators) Results Health of children with cancer is beyond doctor's control and determined by luck, fate or God according to 35% of health-care providers, 30% were uncertain about this statement, and 35% disagreed. Combination of chemotherapy and alternative treatment is best to achieve cure according to 15% of health-care providers, 50% were uncertain, and 35% disagreed. Prosperous parents adhere better with treatment (67%). Doctors adhere better with cancer treatment for prosperous patients (55%). When dealing with poor families, less elaborate explanation is given (62%), more difficult vocabulary is used (49%), and less cooperation is offered (46%). Reasons for non-adherence with treatment protocol were as follows: financial difficulties parents (82%), side-effects (77%), lack of motivation parents (75%), and inadequate drugs supply at pharmacy (70%). Information about cancer and treatment makes parents more afraid or depressed about future, and parents prefer not to know according to 27% of health-care providers, 20% were uncertain, and 53% disagreed. Communication with parents is hindered by differences in status and social hierarchical structures (83%). Conclusions Health-care providers' beliefs about childhood cancer treatment are characterized by much uncertainty and contradiction. This likely affects adherence of health-care providers, parents, and childhood cancer treatment outcome. Copyright © 2013 John Wiley & Sons, Ltd.

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.

Setting Basic epidemiological information on childhood cancer in Western Kenya is lacking. This deficit obstructs efforts to improve the care and survival rates of children in this part of the world. Objective Our study provides an overview of childhood cancer patients presenting for treatment in Western Kenya. Design A retrospective analysis of childhood cancer patients presenting for treatment in Western Kenya was carried out using information from three separate databases at the Moi Teaching and Referral Hospital in Eldoret. All patients aged 0–19 years first presenting between January 2006 and January 2010 with a newly diagnosed malignancy were included. Results A total of 436 children with cancer were registered during the period. There were 256 (59%) boys and 180 (41%) girls with a male/female ratio of 1.4:1. The group aged 6–10 years contained most children (29%). Median age at admission was 8 years. Non-Hodgkin9s lymphoma was the most common type of cancer (34%), followed by acute lymphoblastic leukaemia (15%), Hodgkin9s lymphoma (8%), nephroblastoma (8%), rhabdomyosarcoma (7%), retinoblastoma (5%) and Kaposi9s sarcoma (5%). Only four (1%) children with brain tumours were documented. Ewing9s sarcoma was not diagnosed. Conclusions Our study provides an overview of childhood cancer patients presenting for treatment in Western Kenya. The distribution of malignancies is similar to findings from other equatorial African countries but differs markedly from studies in high-income countries. The new comprehensive cancer registration system will be continued and extended to serve as the basis for an evidence-based oncology program. Eventually this may lead to improved clinical outcomes.

Background: Treatment refusal and abandonment are common causes of treatment failure in childhood acute lymphoblastic leukemia (ALL) in many developing countries. In most studies reasons for abandonment were based on the opinion of health-care providers (HCP), very few studies have focused on the parental point-of-view. Aims of the study were to analyze the parents' reasons of abandonment and to ascertain the fate of children who abandoned treatment in a pediatric oncology centre in Yogyakarta, Indonesia. Methods: We conducted home-visits to interview families of ALL patients, diagnosed between January 2004 and August 2007, who refused or abandoned treatment. Results: From January 2004 to August 2007, 159 patients were diagnosed with ALL of which 40 children (25%) refused or abandoned therapy. Thirty-seven (93%) of these children were home-visited. Reasons for abandonment were complex. Most parents mentioned several reasons. Financial and transportation difficulties were not the only, or even the main reasons, for abandonment. Belief of ALL incurability, experience of severe side effects and dissatisfaction with HCP were also important considerations. Most patients (64%) abandoned treatment during the diagnostic-evaluation or remission-induction phase. Of the 37 patients who refused or abandoned treatment, 26 (70%) children died, and 11 (30%) children were still alive, 2 of them more than 2 years after abandonment. Conclusions: Reducing treatment abandonment of childhood ALL in developing countries requires not only financial and transportation support, but also parental education, counseling and psychosocial support during therapy, improvement of quality-of-care and adequate management of side effects. Copyright © 2009 John Wiley & Sons, Ltd.

Previously, we found that the access to donated chemotherapy for childhood leukaemia patients in Indonesia was limited: only 16% of eligible families received donations. After the introduction of a structured parental education programme, we examined the access of parents of children with leukaemia to donated chemotherapy in an Indonesian academic hospital. The programme consisted of a video-presentation in hospital, information-booklet, audiocassette, DVD, procedures for informed-consent, statement of understanding for donated chemotherapy and a complaints-mechanism. Of 72 new patients, 51 parents (71%) were interviewed by independent psychologists using questionnaires. Parents of 21 patients (29%) did not participate because their children dropped-out (n = 10) or died (n = 11) before an interview took place. Four patients had health insurance and did not need donated chemotherapy. Access to donated chemotherapy was improved: 46/47 patients (98%) received donations. Structured parental education improved the access to donated chemotherapy. Outreach-programmes may benefit from this approach. This may enable more patients from poor socio-economic backgrounds in the developing countries to receive aid and achieve cure.

Non-compliance with childhood acute lymphoblastic leukemia (ALL) protocol is an important determinant of poor treatment outcome. Non-compliance with protocol may not only concern parents or patients, but may also concern health-care providers (HCP). Our study examines the accuracy of leukemia risk classification and attitude of HCP toward protocol compliance in Indonesia.A combined retrospective study of medical records (MR) and a cross-sectional questionnaire study with HCP were conducted. Accurate ALL risk classification in MR was assessed. HCP' knowledge of risk classification and their attitude toward protocol compliance were examined.A total of 164 MR patients with ALL were assessed and 97 HCP were interviewed. The protocol criteria for high-risk (HR) were not complete in 82 MR (50%). Of 97 HCP, 95% did not mention all five protocol criteria for HR. Both in the MR as well as in the questionnaires lymphoblast count on day 8 of chemotherapy, as early response to treatment, was the most frequently missed item (missing in 35% of MR and 85% of questionnaires). Only 14% of respondents actually checked with parents whether they administered the prescribed medicines.Our study shows that HCP should improve their knowledge and assessment of childhood ALL risk classification, especially lymphoblast count on day 8 of chemotherapy. Proper risk classification and subsequent correct treatment may enable more children to be cured of leukemia.

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.

Background: Efficacy of childhood cancer treatment in low-income countries may be impacted by parents’ and health-care providers’ perspectives on chemotherapy-related side-effects. This study explores prevalence and severity of side-effects in childhood cancer, and compares health beliefs about side-effects between parents and health-care providers, and between nurses and doctors in Indonesia. Materials and Methods: Semi-structured questionnaires were filled in by 40 parents and 207 health-care providers in an academic hospital. Results: Parents exporessed a desire to receive more information about side-effects (98%) and worried about this aspect of treatment (90%), although side-effects were less severe than expected (66%). The most frequent was behavior alteration (98%) and the most severe was hair loss. Only 26% of parents consulted doctors about side-effects. More parents, compared to health-care providers, believed that medicines work better when side-effects are more severe (p

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

Noncompliance with prescribed medication has been associated with increased chance of relapse and poor outcome. Side effects may be an important cause of noncompliance. Fifty-one parents of children with acute lymphoblastic leukemia in a tertiary care hospital in Indonesia were interviewed about their perception of side effects and their impact on treatment noncompliance and daily activities. A symptom checklist assessing 13 common symptoms was used to examine side effects. During chemotherapy, childhood acute lymphoblastic leukemia patients suffered from psychological as well as physical side effects. The most frequent side effect reported by parents was behavior alteration (92%). Second and third in frequency were increased appetite and infections, reported by 88% and 83% of parents, respectively. The most severe side effects were leg weakness, increased appetite, and behavior alteration. The overall frequency of side effects was weakly correlated to noncompliance. Reducing the impact of side effects may increase compliance with the treatment.

In our study, we examined socioeconomic, treatment-related, and psychologic experiences of parents during the acute lymphoblastic leukemia treatment of their children in an academic hospital in Indonesia. Children were treated with the WK-ALL-2000 protocol and received donated chemotherapy. From November 2004 to April 2006, 51 parents were interviewed by psychologists using semi-structured questionnaires. The family income had decreased (69%) since the start of treatment. Parents lost their jobs (29% of fathers and 8% of mothers), most of whom stated that this loss of employment was caused by the leukemia of their child (87% of fathers and 100% of mothers). Treatment costs resulted in financial difficulties (78%), debts (65%), and forced parents either to postpone or withdraw from parts of treatment (18%). Parents mentioned needing more information (86%) from and contact (77%) with doctors. The parent organization did not pay any visits (69%) during hospitalization, nor did they give information (59%) or emotional support (55%). We have concluded that the socioeconomic impact of leukemia treatment was profound. Communication between parents and doctors requires improving. The role of the parent organization was insignificant and must be ameliorated.

The cure rate of childhood acute lymphoblastic leukemia (ALL)is as high as 80% in developed countries, and frequently less than35% in resource-poor nations. This difference is believed to beprimarily due to treatment abandonment, an almost unknownproblem in developed countries [1–8].Treatment abandonment constitutes one end of the non-compliance spectrum, which ranges from occasional lapses todrop-out. Failure to adhere to treatment is not restricted to patientsandparents,butcanalsoconcernphysicians.Untilnowresearchhasmainly concentrated on patients’ and parents’ compliance. How-ever, strict physician adherence can also improve survival rates inchildren with leukemia. Health-care providers’ (hcp) own attitude,communication skills, interest in the patient, willingness to provideinformation, and belief in the efficacy of treatment are all importantand able to increase compliance of patients and parents. Poorchildhood leukemia survival in developing countries may partly beattributed to poor communication between physicians, parents, andpatients [9–15].In a previous study [16] performed in Indonesia we found thattreatment results differed significantly between patients withdifferent socio-economic status (SES), even though the childrenwere treated in the same hospital with the same protocol. Treatmentabandonment occurred in 47% of poor and 2% of prosperouspatients. Event-free survival occurred in 11% of poor and 45% ofprosperous patients. There was a striking disparity in the waytreatmentwasgiventopoor,asopposedtoprosperouspatients.Poorpatients received less individualized attention from oncologists.Structured,completeparentaleducationwaslackingandmanypoorpatients were not informed by oncologists about the possibilityof using chemotherapeutic drugs available through donations. Weconcluded that further analysis must be carried out regarding theinfluence of hcp’ own beliefs about the curability of leukemia ingeneral, and of poor patients in particular, on treatment given[16,17].Circumstances in Indonesia likely reflect unreported experi-ences in many parts of the developing world. More than 80% of theworld population live in developing countries and the majority ofthese people come from poor socio-economic backgrounds. There-fore the impact of parental SES on beliefs, attitude and behavior ofdoctors affects many children with cancer [18].In this study we want to gain more insight into the influence ofparental socio-economic status on beliefs, attitude, and behavior ofhcp treating childhood ALL in Indonesia. Is there a difference inattitude and care between patients with poor versus prosperousbackgrounds? If there is a difference, it may contribute to theimmense drop-out rate and poor survival among the less affluent.Survival of childhood ALL in developing countries may improve ifdifferent approaches by hcp are acknowledged and if possibleproblems associated with socio-economic backgrounds can bebetter addressed.

OBJECTIVE. A major reason for poor survival of childhood acute lymphoblastic leukemia in developing countries is treatment refusal or abandonment. This can be associated with parental socioeconomic status and attitudes of health care providers. Our study examined the influence of 2 socioeconomic status determinants, parental income and education, on treatment in an Indonesian academic hospital. METHODS. Medical charts of 164 patients who received a diagnosis of acute lymphoblastic leukemia between 1997 and 2002 were abstracted retrospectively. Data on treatment results and parental financial and educational background were collected. Open interviews were conducted with parents and health care providers. RESULTS. Of all patients, 35% refused or abandoned treatment, 23% experienced treatment-related death, 22% had progressive or relapsed leukemia, and 20% had an overall event-free survival. Treatment results differed significantly between patients with different socioeconomic status; 47% of poor and 2% of prosperous patients refused or abandoned treatment. Although poor and prosperous patients used the same protocol, the provided treatment differed. Poor patients received less individualized attention from oncologists and less structured parental education. Strong social hierarchical structures hindered communication with doctors, resulting in a lack of parental understanding of the necessity to continue treatment. Most poor patients could not afford treatment. Access to donated chemotherapy also was inadequate. Treatment refusal or abandonment frequently resulted. There was no follow-up system to detect and contact dropouts. Health care providers were not fully aware that their own attitude and communication skills were important for ensuring compliance of patients and parents. CONCLUSIONS. Children's survival of acute lymphoblastic leukemia in developing countries could improve if problems that are associated with parental financial and educational background and medical teams' attitudes to treatment and follow-up could be addressed better.

More than 80% of the world population lives in low-income countries. One of the major problems facing low-income countries is corruption. Corruption can be defined as abuse of trust and intentional violation of duty, motivated by gaining personal advantage, from a party in need of a decision or service by a public servant [1]. In many low-income nations, corruption exists at all levels and affects entire society. It is public knowledge that not only government, politics, courts, police, immigration, business, and universities, but also public hospitals can be affected by this phenomenon [1–4]. It is not our intention to imply that corruption is a bigger problem within medicine or pediatric oncology, than it is within other fields. Although corruption also occurs in high-income countries, children in these nations usually have full access to pediatric oncology services [2]. Therefore, we will focus on the effect of corruption on pediatric oncology care in low-income countries. To comprehend the problem of corruption in pediatric oncology, one initially needs to understand the nature of corruption in general. Three types of corruption can be distinguished: (i) Bribery, illegal demand of extra money for public services; (ii) Extortion, ordering gifts, and favors for public duties or using funds for private purposes; (iii) Nepotism, assignment of family or friends to civil services regardless of their capacities and effects on public welfare. In corruption, the common welfare is deliberately subordinated to personal welfare. Corruption is usually surrounded by secrecy, betrayal of trust, deception, suppression, exploitation, inequality, and disregard for consequences suffered by civilians. Corruptors influence definite decisions and camouflage their transactions by some kind of justification. In many low-income nations, both an official and unofficial procedure exists for almost every activity of government-institutions [1–3]. Corruption in medicine includes: (i) Health ministers and hospital administrators, who distort health policy, by demanding bribes and depleting health budgets or funds that should be used to construct clinics, buy medication or engage personnel; to (ii) Medical suppliers who offer bribes; and (iii) Doctors, nurses, and other health-care providers insisting on bribes from patients in public hospitals to supplement low government salaries [2]. Characteristics making medicine and pediatric oncology vulnerable to corruption are: (i) Imbalance of information: Healthcare providers have more knowledge about diseases than patients. Pharmaceutical and medical device companies obtain more information about their goods than officials responsible for spending decisions; (ii) Uncertainty in health outcome: Not knowing in low-income countries which treatments are effective, which children or types of diseases have the best chances of survival, makes it difficult to allocate scarce resources, select patients or diseases, and design health insurance plans; (iii) Complexity and opaqueness of health systems: The large number of policy makers, suppliers, and health professionals complicates the generation and analysis of information, promotion of transparency, and detection and prevention of corruption [2]. Corruption in pediatric oncology has serious consequences and might mean the difference between life and death. Table I illustrates three types of participants in corruption and the effects on pediatric oncology care. The conduct of corruptors in pediatric oncology is characterized by dualism. When an oncologist has to be bribed to make him perform his job, the act is a function of both his profession and his self-interest. Duty and responsibility are violated. Corruption in pediatric oncology may involve more than one individual. A network of health-care providers can collaborate and share profits. So not only oncologists prescribing drugs, but also pharmacists and billing clerks can conspire and profit. It is important to realize that the poor are disproportionately harmed by corruption, because they can less afford bribes or private alternatives. Vulnerability of the poor should be understood in terms of powerlessness rather than simply lacking basic means. Power and powerlessness determine access to aid. Those who lack power cannot safeguard their rights. Public health services are used by health-care providers to neglect, exclude, or exploit the powerless. We conclude that the problem of corruption in pediatric oncology in low-income countries deprives childhood cancer patients of access to medical care, contributes to the high rates of abandonment of treatment, and leads to lower chances of survival [1–5]. Potential measures that could reduce corruption in medicine and pediatric oncology are: (i) Install structured parental education programs in which parents and patients are actively informed about the disease, treatment and their rights. This measure will empower the position of parents and children; (ii) Promotion of transparency monitoring procedures: Governments and medical authorities should publish their health budgets and performance on the internet. Independent audits must take place in government departments, hospitals, and health insurance companies; (iii) Introduction of institutional and individual codes of conduct: Continuous training of anti-corruption awareness and behavior is imperative for health-care providers, pharmacists, administrators, regulators, pharmaceutical, and medical device companies. An independent body should enforce sanctions if required; (iv) Protection of whistleblowers: should be guaranteed

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.