Page 0108

among health care providers (physicians, nurses,

psychologists, nutritionists, social workers), institutions

(hospital directors, university deans) and non-governmental

foundation members (community and patient advocates).

These individuals must understand the needs of children with

cancer including physical, emotional, economic, social and

spiritual as integral components of the chain of care and

twinning relationships are not established unless or until all

pieces are in place. Moreover, these activities have to take

into account social and cultural values, required needs and

available resources. Treatment plans must be based on

medical evidence and integrated with other programmes

existent in the health care system. The vision is that by

implementing a paediatric cancer unit within a hospital, not

only will children with cancer benefit but so will other sick

children and the hospital itself. The goals include improving

cure rates and access to care for children with cancer,

producing generalizable knowledge that has global benefits,

and demonstrating to the local community that progress in

paediatric cancer care is both necessary and feasible.

Although the benefits of twinning are almost always

bidirectional, twinning programmes must be distinguished

from contractual or commercial partnerships for mutual gain

and from research collaborations that focus on a specific

project. The St Jude twinning model emphasizes a horizontal

distribution of resources dedicated to improving survival

rates in childhood cancer overall and developing local support

for children undergoing therapy. It also assists in the creation

of fund-raising efforts (e.g., parents' associations) and the

building of relationships with local foundations willing to

provide financial support that ensures the sustainability of

each project in the long term, rather than restricting the

activities to single diseases that answer specific questions

within a defined time-frame. St Jude staff integrate outreach

activities into their daily schedules and maintain close

contact with their peers through e-mails, phone calls and online meetings. Each country has assigned directors within the

IOP and make site visits every one or two years - sometimes

in association with educational meetings.

Our twinning programmes have been fully established in

Amman, Beijing, Shanghai, Beirut, Casablanca, Rabat,

Caracas, Maracaibo, Culiacán, Guadalajara, Tijuana, Davao,

Guatemala City, Quito, Recife, San Jose, San Salvador,

Santiago and Tegucigalpa. The St Jude IOP also enters into

agreements with institutions in developed countries that

have specific training needs or wish to actively participate in

the development of twinning sites. These include the Hospital

Infantil Manuel de Jesus Rivera in Managua, the Russian

Children's Clinical Hospital in Moscow, the National

University Hospital in Singapore, the Ospedale Nuovo S

Gerardo and Universita` di Milano-Bicocca in Monza, Italy,

and Rady Children's Hospital in San Diego, United States. We

have also facilitated other medical organizations to form

their own twinning programmes. These include the Keira

Grace Foundation with the Hospital Infantil, Dr Robert Reid

Cabral (Santo Domingo, Dominican Republic); the American

Society of Hematology International Consortium on Acute

Promyelocytic Leukemia with institutions in Brazil, Mexico,

Uruguay and Chile; and the Dana Farber Cancer Institute

with the National Cancer Institute in Bogotá, Colombia. The

latter project is supported by a grant from the World Child

Cancer Foundation. Finally, the St Jude IOP has worked in

collaboration with global health agencies such the

International Agency for Atomic Energy to develop specific

paediatric cancer control projects in member states and has

collaborated with the Union for International Cancer Control

(UICC) and the Sanofi-Espoir Foundation to develop the My

Child Matters programme, which funds specific paediatric

cancer programmes in low- and middle-income countries.

Optimally, patients are cared for in a dedicated paediatric

cancer unit that combines the necessary professionals,

expertise and infrastructure. Agreements are only made

when senior medical staff are able to devote themselves to

the project on a full-time basis and to accept the St Jude

philosophy of integrating the programme into the community

and to provide holistic, multidisciplinary care to the children

regardless of the ability of the family to pay for treatment.

We found that medical competence in conjunction with

compassionate care is the most crucial programmatic

component. Ideally, the paediatric cancer unit becomes the

focus of intense education for direct caregivers, including

paediatric haematologists/oncologists, nurses, surgeons,

pathologists, radiotherapists, infectious disease specialists,

acute care physicians, family members and communities.

In many low- and middle-income countries, the paediatric

cancer units must also be the focus of intense educational

efforts to reduce death from infection and abandonment of

therapy. Death from infection is a greater risk in low- and

middle-income countries, partly because of a delay in starting

antibiotics and other supportive measures.

We adopt a stepwise approach to implementing

interventions. This takes into consideration local resources

and needs. At most of the partner sites, acute lymphoblastic

leukemia (ALL) is the initial disease to be addressed, as it is a

common childhood malignancy and is highly curable with

relatively accessible drugs and evidence-based treatment

guidelines. However, successful management of ALL requires

the integration of several components of care, including

PAEDIATRIC AND ADOLESCENT CANCER

CANCER CONTROL 2014 107

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