1. Audit of Provision of Home Intravenous Chemotherapy to Children With Acute Lymphoblastic Leukaemia. Deirdre Armstrong Paediatric Macmillan Nurse Specialist Royal Belfast Hospital for Sick Children

2. Introduction
The Paediatric Macmillan Nurse has close links with the regional children’s cancer unit & provides a link between hospital and community throughout the child’s treatment and palliative care.
The current model of provision is based on an outreach service from the Children’s Haematology/Oncology unit at the Royal Belfast Hospital for Sick Children throughout the province.
Visit throughout the province

3. Background
In recent years, changes in the treatment regime for Acute Lymphoblastic Leukaemia (ALL) in children has resulted in a shift from hospital based delivery of chemotherapy to more outpatient care
The cytotoxic drug Cytarabine is administered intravenously as part of the acute lymphoblastic leukaemia protocols through a central venous access device (CVAD), namely a skin tunnelled catheter in the arm /chest

4. Background
Prior to Jan 2013 the Paediatric Macmillan Team in RBHSC trained patients General Practitioner’s in the administration of I.V. Cytarabine
With the change in practice the team were keen to evaluate the levels of satisfaction with this service
Policy, procedures, guidelines

6. Treatment Protocol

7. Questionnaire
A questionnaire was devised to ascertain the views of parents of 30 children diagnosed with Acute Lymphoblastic Leukaemia who received intravenous Cytarabine at home
All of these children in a 2 year period had received this treatment at some stage as part of their treatment plan
30 questionnaires were distributed and 29 returned
Age range of patients 2 – 15 years and a mean of 7 years of age
A total of 29 patients were involved with 29 questionaires completed. The age of patients ranged from 2yrs to 15yrs with a mean age of 7yrs old.

8. Information Leaflets
In relation to written information about Cytarabine, 94% of patients received written information and felt that there was enough information contained within it. 98% found that informatiion given verbally or written was easy to understand, with 100% understanding the specific instructions on the storage of Cytarabine and its transport home.

9. Home Treatment
Do you feel having Cytarabine administered at home has been easier on….
Families overwhelmingly felt that having chemotherapy at home reduced family upheaval and disruption, they felt that it made life easier caring for other children and family members at home, that it was easier on the child and impacted positively in reduced travel costs.

11. Comments on Home Treatment
Child felt at ease at having receiving cytarabine there
It was far easier and child was more relaxed
Without doubt this made a huge difference to us given our distance from Belfast
It would have been very difficult had we to travel to hospital. We would have travel 40 miles each day
Much better didn’t need to arrange childcare or husband get off work to travel hospital

12. He looked forward to seeing her, & was more relaxed being at home
Was your child frightened or apprehensive due to the presence of the nurse?
Nurses were able to alleviate child’s apprehension and made child at ease
Child gained lots of knowledge & understanding about drugs and treatment + diagnosis from Nurse
He looked forward to seeing her, & was more relaxed being at home

13. Place of Treatment Preferences
Parents were asked if they thought their child would prefer coming to hospital to have the treatment
Only 1 (3%) thought this would be better
Parents were also asked if they would prefer their child to receive this treatment in a hospital setting
Again only 1 (3%) felt this to be a better option

14. I myself would not be happy to administer
Other Alternatives
In some parts of the UK parents administer cytarabine via a central line to their child. Parents were asked how they felt about this and there was a mixed response to this question
I personally feel more comfortable with an experienced nurse to give the cytarabine to my child
Id be ok with this with training & exact pre measured doses so that I was not responsible for any overdose
I did not complete the training however I would not wish to take responsibility for administering chemo, I feel that would be risky
I myself would not be happy to administer
Analysis of comments showed 8(30%) parents would be in favour of
administering treatment themselves. 16(59%) would not be in favour
and 3(11%) were undecided

15. Overall Satisfaction
Parents were asked to rate the service provided by the Paediatric Macmillan team on a scale from (0 for poor, 10 for very satisfied)

16. Conclusion
Patients & families reported a favourable response to this service
As nurses we have found it beneficial
Enriches our assessment of the situation seeing the child at home
Supporting parents & children in a more relaxed environment than hospital