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Continuing therapy in childhood leukaemia. Contents Return to Nursing Progress contents list The term "maintenance therapy" dates from over 20 years ago when children with acute lymphoblastic leukaemia remained on treatment in the expectation that this would "maintain" their remission for a while but sadly, most would relapse. This form of treatment is now regarded as part of the essential schedule for curing leukaemia and the term "continuing treatment" is now more commonly used. (1) "Continuing treatment" is defined as the 1 to 2 year period of outpatient - based treatment given to most children with Acute Lymphoblastic Leukaemia (ALL) once they are in remission. This may be given between blocks of more intensive inpatient treatment and is then given subsequently for 18 months or so. The total treatment schedule is normally about three years from the time of diagnosis. The treatment mainly consists of drugs by mouth (oral drugs) given on an outpatient basis and monitored by regular blood counts (see box). The drug doses are increased or decreased depending on the level of the blood count. |
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The pattern of drug used during continuing therapy . The drugs are given at a dose based on the surface area with blood counts every week. This is usually calculated by body weight, or a formula called surface area based on body weight and height. If the blood counts stabilise it may be possible to decrease the frequency to every two weeks but counts should be continued at this frequency throughout continuing treatment to ensure that the drugs are given to the limits of tolerance. The dose of prednisolone or dexamethasone and Vincristine is not normally varied since these drugs do not cause undue depression of the blood. However, doses will be increased as the child grows or gains weight. The surface area should be measured at least every 12 weeks and noted on the flow chart together with the target dose, i.e. usual top dose for a child of this surface area. The drugs are given at the highest level tolerated without undue depression of the neutrophil count. Usually drugs should be continued at top dose unless the absolute neutrophil count falls below 0.75 x 109/l or platelets below 75 x 109/l. Once the neutrophil and/or platelet count falls, the drugs must be adjusted accordingly. If a child remains on their oral cytotoxic drugs when they are neutropenic, they are in danger of becoming febrile and unwell. At the Paediatric Oncology unit at Barts and the London NHS Trust, titrating the doses of the continuing therapy drugs was traditionally a role taken by the ward registrar. However, with the doctors rotating every few months, this situation was labile in terms of satisfaction for the families and hospitals who were phoning blood results through to the Unit. Blood counts would be left for doctors to reply to families and consequently, could be lost in the busy unit. Also, the doctors on the ward could be busy with immediate ward issues and families waiting for phone calls became frustrated at the lack of communication at times. In order to try and improve this situation, the paediatric oncology nurse specialists were approached and the idea that they took over the titration monitoring was discussed. Initially, the idea seemed immense and a big responsibility to take on, particularly as the unit had just moved from St Bartholomew's Hospital to The Royal London Hospital. However, after reflection, it was agreed that with careful supervision and structured guidelines, the role was one which could be incorporated into the Clinical Nurse Specialist's (CNS) workload and improve communication with the families. Letters were sent out to all families involved, and the paediatric community teams, asking them to contact the CNS with the children's weekly/fortnightly blood counts. Shared care has become a necessity as the demand for beds for children undergoing their intensive treatment has increased. (2-3) As this shared care system was already established with the majority of our patients, the communication pathways were already in place with local hospitals and community teams. The CNS was then responsible for adjusting the child's medication accordingly. Blood counts could be left on the ansaphone in the CNS' office and both CNS' carried pagers, and could be contacted by the community nurses if they wanted to speak to someone in person. The staff on the Oncology units were informed of the change in practice and were also encouraged to educate the families phoning the ward direct, about the new practice. As this was an extended role to both CNS', at the start a meeting was held every week with a Consultant who would review the adjustments made and discuss any borderline decisions. The Consultant was still leading the service, but this has now dramatically reduced and the weekly meetings have discontinued. Gradually the confidence of the CNS' has grown and the decisions about increasing or decreasing children's drug doses has become an integral part of their role. In order to keep track of the 50-plus children receiving treatment for leukaemia, flow sheets are devised for each child which map out their three monthly cycles. The flow sheets are duplicated for the doctors as well as the CNS. This is to ensure that the medical staff can discuss any child's treatment, should a parent ring overnight or at weekends when the CNS' are not available. Each time the family visits the regional oncology centre, they receive a flow sheet for the next three months. This flow sheet is also sent out to the local district hospital, where the monthly Vincristine injections will be given and to the Paediatric Community Team (where applicable) who usually take the blood samples from the children at home. Regular 'roadshows' to local hospitals used by the Regional Oncology Centre (ROC) are offered. These involve a Consultant and one of the CNS' visiting the district general hospitals to discuss the patients sharing care between the two centres and also to present any new protocols or aspects of care. The CNS' role in the leukaemic children's continuing therapy is also discussed at these roadshows to show how the system has improved since the responsibility was moved from medical to nursing staff. Before the protocol for the Oncology Nurse Specialist to adjust the continuing treatment was developed, the senior nurse for Policy Development, Head of Nursing for Paediatrics, Children's Services General Manager and the Assistant Director of Pharmacy met and discussed our application for NAAP (Nurse Administration According to Protocol). This policy, "... enables Clinical Nurse specialists working within specialist areas to develop protocols allowing them to administer agreed medicines to patients without the need for the doctors prescription." During the meeting it was established that the medical staff were responsible for prescribing an appropriate dose for the child when they attended the ROC e.g. 100% doses, 50% doses or no medications. Following discharge from the ROC, the responsibility for titrating the drug doses would fall to the CNS'. It was agreed that the CNS's shold develop a protocol. Verbal feedback from the families has been positive and a formal evaluation is currently being undertaken. Some community nurses have expressed concern at leaving blood counts on an answering machine, so the use of pagers and mobile phones allows the CNS' to be contacted even though they may be away from the office and outside the hospital. Some families have taken the responsibility of phoning through blood counts themselves, rather than using a 'middle man' and children's doses can then be discussed directly with the parent who is to be giving the children their medication. Additionally, if children have run out of medicines or their local hospital is having problems obtaining the format required, repeat prescriptions can be organised through the CNS'. Since the 1960's there has been an increasing trend towards centralisation of the treatment of childhood cancers in the United Kingdom, in order that children may benefit from the latest advances in treatment. (4) However, families can now benefit from these advances without having to travel to their regional oncology centre, which is costly and disruptive to the family setup. A system of shared care works well for most families, as long as there is careful planning and two-way communication between the regional oncology centre and the local services. (5) During the maintenance period as described in this article, the families are able to spend as much time at home as possible, with the knowledge that there is a constant check on their child's progress by staff that the family know and have continuing contact with. 1. Chessells J. Maintenance treatment and snared care in lymphoblastic leukaemia. Archives of Disease in Childhood 1995: 73; 365–73. 2. Patel N at al. Development of a shared care programme for children with cancer Journal of Cancer Nursing 1997: 1.3; 147–50. 3. Hooker & Williams. 1996. 4. Stiller C. Centralisation of treatment and survival rates for cancer. Archives of Disease in Childhood 1985: 63; 23–30. 5. Orton, P. (1994) Shared care. The Lancet 1994: vol 344 November19; 1413–15. Nursing Progress: Issue 9: December 2000. Copyright: Nursing Progress, Royal Hospitals NHS Trust Return to Nursing Progress contents list Back to Issue 9 contents list Page last updated by DEB on 14/10/02 |