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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: 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 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: 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.

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.

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

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

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

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.

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.

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.

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

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.