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PAEDIATRIC AND ADOLESCENT CANCER

CANCER CONTROL 2014 109

diagnostics, supportive care, delivery of multi-agent

chemotherapy, adherence to treatment, and long-term

follow-up. Hence, implementation of an effective treatment

plan for ALL allows that many other chemotherapy-sensitive

malignancies can be treated as well. We suggest treatment

protocols be based on published evidence and developed

with specific local conditions in mind, including the

availability and affordability of the chemotherapy agents, the

expected requirements for supportive care and the

availability of support services needed to deliver the therapy.

The goal is to quickly achieve a 60% event-free survival rate

and then to target the most common causes of failure for

improvement. For example, if abandonment of therapy and

toxic deaths are the most common causes of failure,

improved hospital supportive care and the social and

economic help for the families are the logical priorities. The

above points were elegantly demonstrated by our experience

in Recife, Brazil, in which the rate of abandonment was

reduced to less than 1% and the rate of toxic deaths to less

than 10%. Toxic deaths were reduced through a combination

of improved supportive care and individualization of the

treatment protocol according to each patient's clinical

condition. For example, patients with a large tumour burden

and associated morbidity, such as infection and malnutrition,

received gentle tumour reduction, treatment for infection,

and nutritional support for several days before the intensity

of anticancer therapy was escalated. Individualized protocol

adaptation is facilitated by weekly case discussions between

the local and St Jude physicians via the www.cure4kids.org

web-conference tool.

The infrastructure created to treat ALL can support the

successful management of lymphomas, promyelocytic

leukemia, and other cancers that can be cured with

chemotherapy alone. With the availability of trained

paediatric surgeons and radiotherapists, Wilms tumour,

favourable-prognosis rhabdomyosarcoma, neuroblastoma,

Ewing sarcoma, osteosarcoma, and retinoblastoma can also

be adequately treated. In some countries, chemotherapyonly protocols have

been developed for childhood Wilms

tumour and Hodgkin's lymphoma because of the

unavailability of radiation therapy. Management of acute

myeloid leukemia (AML) and brain tumors remains

challenging at many partner sites.

To measure the progress of partner sites' cancer units, we

established several quantitative and qualitative variables and

individualized them for each programme. An increase in the

number of children assisted and survival rates are the

absolute indicators of success. Other outcome indicators are

the number of children who finish treatment, the number of

children who remain in follow-up, the number of diseases

managed with uniform guidelines (evidence-based), the

number of children enrolled on protocols with uniform

guidelines and the number of health care providers dedicated

to paediatric oncology. Finally, an important consideration is

to determine whether a partner country's fundraising

organization and government are achieving selfsustainability.

The amount of St Jude's direct financial

contribution relative to the entire paediatric cancer unit is

one of these indicators. For example, in many of our partner

sites, at the start of our programme, the St Jude contribution

represented the largest portion of the paediatric cancer

unit's budget. As the programme develops and financial

support from non-governmental and governmental sources

becomes available, the relative St Jude contribution to the

entire cancer unit budget traditionally decreases to about 3%

to 4% of the total expenses. Careful documentation and

analysis of the adverse events in children managed uniformly

on treatment protocols is crucial to detect areas that need

improvement. Weekly data manager training sessions are

held via www.cure4kids.org in both English and Spanish. A

database specifically designed for paediatric oncology

(Pediatric Oncology Networked Database [POND],

www.pond4kids.org) has been available for partner sites. St

Jude IOP is improving POND to accommodate a tumour

registry as well as cancer-specific, nutritional, psychosocial,

and socioeconomic information. The data are stored on a

dedicated server, which is encrypted, password protected,

and backed up every 10 minutes. This server is located in the

United States and we are modifying POND software to allow

the data to be stored at the local user facilities. Treatment

protocols can be shared via a global library so that other sites

can use them.

The sustainability of the paediatric oncology units has been

an important consideration since the inception of the

twinning concept. The public sector is an unlikely funding

source for these initiatives. In most countries in which St

Jude's IOP establishes partnerships, government health

budgets are barely adequate to fund the management of

common communicable paediatric diseases. In addition,

government officials in these countries often lack the

experience base needed to implement a national paediatric

cancer programme; hence, paediatric cancer care emerges as

an individual or private-sector initiative. A local NGO has

been developed at almost all St Jude IOP partner sites where

paediatric cancer treatment is not fully government-funded,

to complement the support needed for the diagnosis and

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