How long will the needs last?
Neuroblastoma Duration Guidance
Low risk group
Needs are not anticipated in this group. Full recovery is expected even if recurrent disease occurs. The exception to this is children with neurological symptoms who have difficulty walking or continence problems. Two year awards are recommended for these complications of the neuroblastoma. At two years if medical evidence shows mobility or continence problems persist, an indefinite award is recommended.
Intermediate Risk Group
This group may undergo chemotherapy and surgery and may have additional care needs related to the treatment and its side effects for 4 to 8 months. This will depend on the duration and type of treatment planned. If needs related to treatment are identified, a 1 year award is recommended. If needs related to neurological problems are claimed, a two year award is recommended in relation to these. At two years if medical evidence shows mobility or continence problems persist, an indefinite award is recommended. In the majority of cases a full recovery is expected.
High risk group and children who plan to have stem cell transplant
Children in the high risk group will undergo intensive treatment including surgery, radiotherapy, chemotherapy, high dose chemotherapy and stem cell transplant and finally 13-cis-retinoic acid and immunotherapy. Children in this group are likely to develop care needs related to administering treatment and coping with side effects. In particular they will require care and help to cope with the physical side effects of chemotherapy and to prevent infection during periods of immunosuppression.
Children in this group are at increased risk of recurrent disease and may undergo further treatment including chemotherapy for recurrence when this occurs.
A 4 year award is recommended for children in this group. At 4 years, prognosis becomes clear, children who will recover will have done so and any enduring disabling effects of the disease or treatment will be stable. If needs persist at 4 years of age, an indefinite award is recommended in this group.
