Severe cerebral palsy has been known to increase the risk of death in one’s life. This study aimed to discuss issues of care for cerebral palsy, based on a survey about the age and the causes of death in children with severe cerebral palsy at the Cambodian national orphanage in 2003-2019.
We included 13 children with severe cerebral palsy who were admitted to the orphanage in 2003. The severity of their disability was classified using Gross Motor Function Classification System (GMFCS), Eating and Drinking Ability Classification System (EDACS), and the overall disability score (DISAB score). Death profiles were obtained from the orphanage records and by interviewing staff in 2019. The 20-year survival rate was analyzed using the Kaplan-Meier method with the time of birth as the enrollment.
The age of children was 2-13 (median 5) years in 2003. Of these, 11 were classified into level V in GMFCS, and nine of them were severely handicapped with a DISAB score of ≥ 9 and had EDACS III-IV dysphagia. The survival curve linearly decreased at the age of 9-18 years, and all children with a DISAB score of ≥ 9 died by the age of 18 years. The 20-year survival rate from the time of birth was 23% and median survival time was 14 years. The most common death profile was “a gradual loss of appetite, weight loss, and death.” Eating ability of all three survivors over the age of 20 was relatively high.
Based on the death profiles, the main cause of death was severe malnutrition caused by dysphagia and the accompanying weakness, heart failure, hypoglycemia, etc. Individual nutritional management and approaches for dysphagia are important for improving the survival of children with cerebral palsy in the Cambodian orphanage.
The Department of Pharmacy at the National Center for Global Health and Medicine and the Japan Pharmaceutical Manufacturers Association planned and carried out a training project for the proper use of medications at Bach Mai Hospital (BMH), a hospital that plays a central role in Vietnam.
The training was conducted for clinical pharmacists at BMH, and the goal of the training was to develop group guidance for the patients on their proper use of medications, and to create a medication support tool for patients.
In order to clarify the current challenges and provide proper information of the medications by the BMH pharmacists, two questionnaire surveys were conducted to patients who received the patient group guidance by the BMH pharmacists and those who used the medication support tool.
Questionnaire surveys were conducted on patients with diabetic mellitus admitted to BMH and who met the following conditions.
①Patients who received group guidance for diabetic patients by clinical pharmacists.
②Patients who were provided with medication support tools and used the tools
Results of questionnaire surveys revealed that the patients understood anti-diabetic medications well and the knowledge of hypoglycemia had improved after pharmacists’ intervention. The guidance by clinical pharmacists was very satisfactory for the patients. More than 80% of the patients who were provided with medication support tools answered that they understood well the messages on tools.
The patient group guidance provided by BMH pharmacists who received training in Japan, improved patients’ level of understanding in medications. In addition, the medication support tool was easy to understand for Vietnamese patients. From the perspective of promoting the proper use of medications, it is necessary to build sustainable information providing system.