Saskia Mostert

Abandonment of childhood cancer treatment in Western Kenya

Background The most important reason for childhood cancer treatment failure in low-income countries is treatment abandonment. Objective The aim of this study was to explore reasons for childhood cancer treatment abandonment and assess the clinical condition of these children. Design This was a descriptive study using semistructured questionnaires. Home visits were conducted to interview families of childhood cancer patients, diagnosed between January 2007 and January 2009, who had abandoned treatment at the Moi Teaching and Referral Hospital (MTRH). Results Between January 2007 and January 2009, 222 children were newly diagnosed with a malignancy at MTRH. Treatment outcome was documented in 180 patients. Of these 180 patients, 98 (54%) children abandoned treatment. From December 2011 until August 2012, 53 (54%) of the 98 families were contacted. Due to lack of contact information, 45 families were untraceable. From 53 contacted families, 46 (87%) families agreed to be interviewed. Reasons for abandonment were reported by 26 families, and they were diverse. Most common reasons were financial difficulties (46%), inadequate access to health insurance (27%) and transportation difficulties (23%). Most patients (72%) abandoned treatment after the first 3 months had been completed. Of the 46 children who abandoned treatment, 9 (20%) were still alive: 6 (67%) of these children looked healthy and 3 (33%) ill. The remaining 37 (80%) children had passed away. Conclusions Prevention of childhood cancer treatment abandonment requires improved access to health insurance, financial or transportation support, proper parental education, psychosocial guidance and ameliorated communication skills of healthcare providers.

Epidemiology of diagnosed childhood cancer in western kenya

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-Hodgkins lymphoma was the most common type of cancer (34%), followed by acute lymphoblastic leukaemia (15%), Hodgkins lymphoma (8%), nephroblastoma (8%), rhabdomyosarcoma (7%), retinoblastoma (5%) and Kaposis sarcoma (5%). Only four (1%) children with brain tumours were documented. Ewings 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.

Two overlooked contributors to abandonment of childhood cancer treatment in Kenya: parents' social network and experiences with hospital retention policies.

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 doctors discharge until medical bills are settled.

Socio-economic Status Plays Important Roles in Childhood Cancer Treatment Outcome in Indonesia

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<0.0001). Odds-ratio for treatment abandonment was 3.3 (95%CI: 1.4-8.1, p=0.006) for poor versus prosperous patients. Parents often believed that their childs health was beyond doctor control and determined by luck, fate or God (55%). Causes of cancer were thought to be destiny (35%) or Gods punishment (23%). Alternative treatment could (18%) or might (50%) cure cancer. Most parents (95%) would like more information about cancer and treatment. More contact with doctors was desired (98%). Income decreased during treatment (55%). Parents lost employment (48% fathers, 10% mothers), most of whom stated this loss was caused by their childs cancer (84% fathers, 100% mothers). Loss of income led to financial difficulties (63%) and debts (55%). CONCLUSIONS Treatment abandonment was most important reason for treatment failure. Treatment outcome was determined by parental socio-economic status. Childhood cancer survival could improve if financial constraints and provision of information and guidance are better addressed.

Influence of health-insurance access and hospital retention policies on childhood cancer treatment in Kenya

Kenyan national policies for public hospitals dictate that patients are retained on hospital wards until their hospital bills are paid, but this payment process differs for patients with or without access to National Hospital Insurance Fund (NHIF) at diagnosis. Whether these differences impact treatment outcomes has not been described. Our study explores whether childhood cancer treatment outcomes in Kenya are influenced by health‐insurance status and hospital retention policies.

Parental experiences of childhood leukemia treatment in indonesia.

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.

Corruption in health-care systems and its effect on cancer care in Africa

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.

Health-care providers' compliance with childhood acute lymphoblastic leukemia protocol in Indonesia

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.

Hospital detention practices: statement of a global taskforce

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.

Health‐care providers' perspectives on childhood cancer treatment in Manado, Indonesia

Childhood cancer survival in low‐income countries is low.