This paper was presented at the tenth anniversary meeting in Valencia (Spain), May 2204.

Children and adolescents with malignancies are referred to a paediatric oncology centre where a multi-disciplinary team can attend to both medical and non-medical needs. In such a tertiary centre, initiation of therapy and ongoing monitoring of treatment response occurs. Key elements are continuity of care, familiarity, and trust from diagnosis through all stages of care, including palliative care and long-term follow up of survivors.

Children and adolescents have the right to stay at home and live a life as normal as possible and disruption of family life should be prevented as much as possible. Shared care, with the involvement of the family doctor and the general hospital near the place where the family lives, is a solution. Provided that ongoing quality of care is guaranteed some selected components of care can be equally well provided in the community. Often these are components of supportive care. When a child or adolescent cannot be cured, he/she should be allowed to die at home, unless the parents and the patient decide otherwise. For those families who decide to have their child die at home, continual medical and psychosocial support should be insured. In the palliative phase families should at no point feel abandoned by the professional caregivers.

The importance of supportive care

During the last decades combined and improved treatment modalities have gradually increased survival rates for children with cancer from less than 10% in 1940 to around 73% at present. Although surgery, chemotherapy and radiotherapy account for this 180¼ turn, advances in supportive care allowed the reversal to occur. Without supportive care there would have been little progress in the major therapeutic disciplines. Children would have died from complications and infections caused by the intensity of the treatment. Supportive care made it all possible.

Supportive care comprises multiple modalities such as nutritional support, mouth care, toxicity monitoring, antibiotics, early treatment of fever, immunizations, prevention and treatment of emergencies, blood products, pain management, growth factors, anti-emetics, vascular access, psychosocial care, home care, palliative and terminal care, etc.

With the intensification of the therapy, the need for adequate supportive care is of utmost importance to maintain the high percentage of survival. Driven by innovative and ever more aggressive therapeutic approaches, supportive care must be constantly intensified and improved.

With the increase of the survival rates of children with cancer, the quality of life during and after treatment is displacing cure as the paramount objective. It is also this shift in emphasis that makes supportive care as important as surgery, chemotherapy or radiotherapy. 

The need of a formalised approach

Outreach programmes have many advantages: family life remains more or less intact, there is less travelling so less expenses, and patient and parents report the special attention in the community where a child with cancer is unique. But:

1)    The family has to deal with more caregivers. Often very shortly after diagnosis the child is referred back to the hospital in the community. The family has hardly overcome the first shock when they have to deal with new caregivers. New people, different approaches. It takes time and energy to get to know these new people involved in the treatment of their child, and to build a trustful relationship with them as well.

2)    Even the slightest difference in procedures can cause uncertainty, insecurity and concern. A different type of needle for the Porth-a-Cath or for a capillary sample, a different sequence for a drip, wearing gloves or not, a venous puncture instead of a finger prick, waiting in the general waiting room with a risk of infection, a doctor who is nervous and thus shows he doesn't often see children with cancer, a lab assistant who doesn't give the child the choice in which finger it will be poked, results of blood samples that aren't given within 30 minutes like in the centre but only the next day, no possibilities to stay with the child during the night ... all factors that can influence the family's trust.

3)    A different approach in supportive care measures can cause enormous stress with child and parents. The how, when and where of anti-emetics, antibiotics, management of fever, transfusions, nutritional support, pain management etc. are sometimes not in accordance with the centre. The same applies to the daily regimen: is the child allowed to go to school, to swim, to eat salads, ice-cream, soft cheese, to have visitors, pets, to go to the cinema, the zoo, etc.

4)      Medical information given by the general paediatrician can be different and even contradictory due to lack of expertise or lack of communication with the centre. No wonder parents start questioning the quality of care: do they here know as much as in the paediatric oncology centre? Is my child safe and in good hands?

How do we make sure that ongoing quality is guaranteed? How can we - during the entire treatment process  - support families in such a way that they are convinced that the child gets the best possible care, whether it is in the paediatric oncology centre, the regional hospital or at home? What are the requirements to make supportive care in the community a success?

Uniformity in supportive care

The uniqueness of childhood cancer care requires an organised and formalised approach, the development of special knowledge and expertise in community caregivers and a commitment to ongoing education.

Though today no one will question the important role of supportive care for children with cancer, only a few clinical studies have been performed in this area and standards of care are far away. The influence of supportive care as a variable on clinical outcome could be as great or even greater  than that of a specific therapeutic manipulation. This speaks for an adoption of some uniformity in supportive care measures in the conduct of cooperative studies.

Uniformity and a common approach in supportive care is also important to prevent distress among patients and parents.

National consensus

Four years ago, the Dutch Childrens' Cancer Study Group (SKION) formed a task group Supportive Care with the purpose to develop national guidelines for supportive care for children with cancer.

The group consisted of representatives from the five paediatric oncology centres, the two paediatric bone marrow transplant centres, the paediatric oncology nurses group and the parent organisation (VOKK). The task group developed a Handbook Supportive Care, based upon evidence (if any) and on national consensus. The input of the Parent Organisation (VOKK) has been indispensable in the sense that their representative could identify the questions, needs and uncertainties of parents and be their voice in important areas like pain management, home care, palliative and terminal care, psychosocial care etc. The book will be published mid 2005 and be sent to all paediatricians that are involved in the treatment of children with cancer. This is a good example of a formalised, uniform approach.

Conclusion

To make supportive care in the community succeed, it is essential that the patient cooperates. Parents need to be educated about possible problems, need to know when to get professional help, and whom to call. A consistent policy and national protocols for supportive care are essential to gain the trust of the patient and his/her parents. Finally effective and fast communication between the different health care systems and the parents is a condition sine qua non.

Dr. Marianne C. Naafs-Wilstra, Executive Director, Childhood Cancer Parent Organisation VOKK,

The Netherlands, ICCCPO Board member