Day 2 :
The Edmond and Lily Safra Children’s Hospital, Israel
Keynote: Waze to the oncology patient that is heading forward to an incredibly difficult path, a long one and dangerous.
Time : 10:00-10:40
Background: The treatment of leukemic child is a complicated and long chemotherapy treatment that usually takes two years. The existing protocol is in an international format that intended to the medical staff who familiar with the medical terms, shortcuts and symbols. The protocol consists number of chemotherapies i.v, p.o and i.t , some of them require hospitalization and some are given in the day care department.
The goal: Creating a new booklet that is deigned to use as a map of the therapy plane. The booklet describes the therapy for each day in a table that includes all the medicines, related information for each medicine or medical examination. The purpose of the booklet is accessible the medical protocol in order to increase the knowledge of the patient and his family and to increase their involvement in the therapy. All that in order to improve the safety and the quality of the therapy.
Method: step 1: Identifying a complicated/long medical protocol that has the most potential to benefit from a detailed map in a booklet.
Step 2: Acquaintance and understanding of the chemotherapy protocol. Identify the characteristics, the important needs and the required information that is necessary for the success of the treatment.
Step 3: Building an integrative table that consists all the medicines and examinations per day with all the relevant information that identified as important for the success of the treatment.
Step 4: Graphic design and translation for other languages (Russian, Arabic and English).
Viewing data: A booklet has been built for ALL-BFM-95 protocol in children with Acute Lymphoblastic Leukemia for high risk groups, duration 2 years. During 2019 the booklet was handed to 7 patients before starting the treatment. Out of them 2 patients already finished the treatment and 5 were still in middle of the treatment. Evaluation of the patients and their parent’s satisfaction was done by questionnaires. The questionnaires were given to the patients that finished at least half of the treatment. There were 3 main topics in the questionnaire: expanding the knowledge of the patient, developing same common language among staff members and patient and reducing patient’s anxiety.
Conclusions: 100% of the patients indicated to a very large extent that the booklet increased their knowledge in regards of their treatment. 57% of the patients indicated to a very large extent that the booklet contributed to a better communication with the staff, and 43% of the patients indicated to a large extent. 14% of the patients indicated that the booklet contribute to decrease the level of anxiety to a very large extent, 14% indicated in a large extent and 62% indicated in a medium extent.
Summary: patients and their parents can benefit from the booklet and can be more involved in the process of the treatment by using it. During 2019 booklets were produced for two more protocols: Langerhans cell Histiocytosis (LCH) and protocol for low grade glioma in children, those booklets haven’t been handed to patients yet.