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Archives of Disease in Childhood | 2014

Abandonment of childhood cancer treatment in Western Kenya

Festus Njuguna; Saskia Mostert; A. Slot; Sandra Langat; Jodi Skiles; Mei Neni Sitaresmi; P.M. van de Ven; J. Musimbi; H. Muliro; Rachel C. Vreeman; G. J. L. Kaspers

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.


Archives of Disease in Childhood | 2012

Epidemiology of diagnosed childhood cancer in western kenya

Saskia Mostert; Festus Njuguna; Luc Kemps; Matthew Strother; Louise Aluoch; Gyabi Buziba; Gertjan J. L. Kaspers

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.


Psycho-oncology | 2014

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

Saskia Mostert; Festus Njuguna; Sandra Langat; A. Slot; Jodi Skiles; Mei Neni Sitaresmi; P.M. van de Ven; J. Musimbi; R.C. Vreeman; G. J. L. Kaspers

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.


Pediatric Blood & Cancer | 2014

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

Saskia Mostert; Festus Njuguna; P.M. van de Ven; Gilbert Olbara; L.J.P.A. Kemps; J. Musimbi; R.M. Strother; L.M. Aluoch; Jodi Skiles; N.G. Buziba; Mei Neni Sitaresmi; R.C. Vreeman; G. J. L. Kaspers

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.


Lancet Oncology | 2015

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

Saskia Mostert; Festus Njuguna; Gilbert Olbara; Solomon Sindano; Mei Neni Sitaresmi; Eddy Supriyadi; Gertjan J. L. Kaspers

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.


BMC Palliative Care | 2012

Assessment of the face validity of two pain scales in Kenya: a validation study using cognitive interviewing

Kristin T. L. Huang; Claudio Owino; Rachel C. Vreeman; Mildred Hagembe; Festus Njuguna; R. Matthew Strother; Gregory P. Gramelspacher

BackgroundPatients in sub-Saharan Africa commonly experience pain, which often is un-assessed and undertreated. One hindrance to routine pain assessment in these settings is the lack of a single-item pain rating scale validated for the particular context. The goal of this study was to examine the face validity and cultural acceptability of two single-item pain scales, the Numerical Rating Scale (NRS) and the Faces Pain Scale-Revised (FPS-R), in a population of patients on the medical, surgical, and pediatric wards of Moi Teaching and Referral Hospital in Kenya.MethodsSwahili versions of the NRS and FPS-R were developed by standard translation and back-translation. Cognitive interviews were performed with 15 patients at Moi Teaching and Referral Hospital in Eldoret, Kenya. Interview transcripts were analyzed on a question-by-question basis to identify major themes revealed through the cognitive interviewing process and to uncover any significant problems participants encountered with understanding and using the pain scales.ResultsCognitive interview analysis demonstrated that participants had good comprehension of both the NRS and the FPS-R and showed rational decision-making processes in choosing their responses. Participants felt that both scales were easy to use. The FPS-R was preferred almost unanimously to the NRS.ConclusionsThe face validity and acceptability of the Swahili versions of the NRS and FPS-R has been demonstrated for use in Kenyan patients. The broader application of these scales should be evaluated and may benefit patients who currently suffer from pain.


Pediatric Blood & Cancer | 2015

Risk factors for abandonment of Wilms tumor therapy in Kenya

Jaime Libes; Oliver Oruko; F K Abdallah; Jessie Githanga; James Ndung'u; J. Musimbi; Festus Njuguna; Kirtika Patel; John H. White; Jason R. Axt; James A. O'Neill; Martha J. Shrubsole; Ming Li; Harold N. Lovvorn

Survival from Wilms tumor (WT) in sub‐Saharan Africa remains dismal as a result of on‐therapy mortality and treatment abandonment. Review of patients diagnosed from 2008 to 2011 in our Kenyan Wilms Tumor Registry showed a loss to follow up (LTFU) rate approaching 50%. The purpose of this study was to trace those LTFU, estimate the survival rate, and identify risk factors for treatment abandonment.


The Lancet | 2015

Hospital detention practices: statement of a global taskforce

Saskia Mostert; Catherine G. Lam; Festus Njuguna; Andrea Farkas Patenaude; Ketan Kulkarni; Carmen Salaverria

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.


Pediatric Blood & Cancer | 2012

Effect of corruption on medical care in low-income countries

Saskia Mostert; Mei Neni Sitaresmi; Festus Njuguna; Eduard J. van Beers; Gertjan J. L. Kaspers

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


Journal of Global Oncology | 2017

Global Use of Traditional and Complementary Medicine in Childhood Cancer: A Systematic Review

Caroline Diorio; Catherine G. Lam; Elena J. Ladas; Festus Njuguna; Glenn M. Afungchwi; Katherine Taromina; Stacey Marjerrison

Purpose Traditional and complementary medicine (T&CM) strategies are commonly used in pediatric oncology. Patterns may vary based on country income. We systematically reviewed published studies describing T&CM use among pediatric oncology patients in low-income countries (LIC/LMIC), middle-income countries (UMIC), and high-income countries (HIC). Objectives included describing estimated prevalence of use, reasons for use, perceived effectiveness, modalities used, rates of disclosure, and reporting of delayed or abandoned treatment. Methods MEDLINE, EMBASE, Global Health, CINAHL, PsycINFO, Allied and Complementary Medicine Database, Cochrane Database of Systematic Reviews, and ProceedingsFirst were searched. Inclusion criteria were primary studies involving children younger than the age of 18 years, undergoing active treatment of cancer, and any T&CM use. Exclusion criteria included no pediatric oncology–specific outcomes and studies involving only children off active treatment. Data were extracted by two reviewers using a systematic data extraction form determined a priori. Results Sixty-five studies published between 1977 and 2015 were included, representing 61 unique data sets and 7,219 children from 34 countries. The prevalence of T&CM use ranged from 6% to 100%. Median rates of use were significantly different in LIC/LMIC (66.7% ± 19%), UMIC (60% ± 26%), and HIC (47.2% ± 20%; P = .02). Rates of disclosure differed significantly by country income, with higher median rates in HIC. Seven studies reported on treatment abandonment or delays. Conclusion The use of T&CM in pediatric oncology is common worldwide, with higher median prevalence of use reported in LIC/LMIC. Further research is warranted to examine the impact on treatment abandonment and delay.

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Saskia Mostert

VU University Medical Center

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P.M. van de Ven

VU University Medical Center

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G. J. L. Kaspers

VU University Medical Center

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