Development of Paediatric Oncology Shared-Care Networks

World Child Cancer has been working in partnership with paediatric oncology programmes in low-middle income countries (LMIC) to support the development of high quality services for children with cancer.

These programmes have been shown to become the most effective through the development of shared-care networks(for definitions please see the table below).

This resource is intended to share the learning of these programmes and demonstrate the ideal model of shared-care network development.The information set out below was gained through learning from a three year UK Government (FCOD) funded programme in Ghana and Bangladesh, lessons shared from World Child Cancer-funded programmes in Myanmar and the Philippines, and a workshop to discuss the development of shared-care networks.

Why develop shared-care networks?

Access to services constitutes a major barrier to cancer diagnosis and treatment for the majority of children in LMIC.

Knowledge of early warning signs and symptoms amongst frontline health workers and hospital staff is low, there are a limited number of centres able to provide treatment and few specialist paediatric oncologists. This all results in under-diagnosis, high rates of abandonment and low survival rates.

The development of shared-care centres with a link to a referral (or hub) centre, improves access for more children, and offers the chance of diagnosis and care.

The aim is for symptoms to be recognised by trained staff, and for aspects of care to be delivered at centres closer to the patient’s home; relieving some of the financial and logistical constraints to continuing treatment.

Key Definitions

The table below is a summary of key definitions agreed by stakeholders to best describe the different elements of the shared-care system. Minimum criteria were agreed for each of the terms used in this resource. The terms agreed to be used following this exercise were shared-care network, hub centre, shared-care centre and referral pathway.

How to develop shared-care networks

One of the strongest recommendations from stakeholders was to ensure that the selection of shared-care centres and staff was strategic and carefully considered, for the best chance of success. Collaborative working and good communication are essential elements and should be emphasised at the beginning, as should the support of the hospital administration. The group felt that the best way of working in a network was through sharing and using the same treatment protocols, developing two-way referral systems between centres (ideally having a shared database system)and sharing successes. It was also advised that having a strategic and feasible development plan at the start was important; comprising a timeline, planned measurable outputs / outcomes, reporting procedures and a budget. The idea of sustainable development was stressed, through step-by-step processes, funding support and train-the-trainer opportunities within the network.

The over-arching themes of the network were those of communication, health partnerships (twinning) and funding.

WHO building blocks for health system strengthening

The World Health Organisation describes health systems in terms of 6 core components or “building blocks”. These are:

1. Service delivery

2. Health workforce

3. Health information systems

4. Access to essential medicines (v) financing (vi) leadership & governance. (Ref. 1). Paediatric oncology shared-care networks were examined through the lens of these building blocks as part of this exercise. This enabled us to buildup a picture of the key elements which are required for a functioning shared-care network, organised under the WHO framework.

The elements of the shared-care system were also considered using various role-play scenarios, to look at the system from the perspective of other key stakeholders, including multi-disciplinary healthcare and administrative workers, parents and children with cancer.
 

Acknowledgments

The key aim of this work is to share the learning of World Child Cancer and partner organisations in the development of shared-care networks, to avoid duplication and enable others in LMIC to access the information and inform their system developments.We wouldliketo thank our partners in Ghana, Bangladesh, Myanmar and the Philippines for their help in developing this resource.