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