ABSTRACT
INTRODUCTION: Awareness for paediatric palliative care has resulted in the impetus for paediatrician-led palliative care services across Malaysia. However, there is paucity of local data on patients receiving hospital-based paediatric palliative care. We aim to review the clinical spectrum of patients referred to these services. METHODS: An observational study of children aged between 0-18 years receiving palliative care at 13 hospitals between 1st January and 31st December 2014 was carried out. RESULTS: There were 315 patients analysed, 90 (28.6%) and 46 (14.6%) were neonates and adolescents respectively. The main ICD-10 diagnostic categories for all patients were identified to be 'Congenital malformations, deformations and chromosomal abnormalities' 117 (37.1%), 'Diseases of nervous system' 76 (24.1%) and 'Neoplasms' 60 (19.0%). At referral 156 (50%) patients had holistic needs assessments. Patients with 'Diseases of nervous system' were assessed to have significantly more physical needs than the other two diagnostic categories. Majority of patients who knew of their diagnosis and prognosis were those with malignancy. Over a fifth of referrals were at their terminal admission. Of 144 who died, 111 (77.1%) had advanced care plans. There was bereavement follow-up in 98 (68.1%) patients. CONCLUSION: Patients referred for palliative care have varied diagnoses and needs. To ensure all paediatricians are competent to deliver quality care to all children, further education and training initiatives is imperative.
Subject(s)
Hospitals/statistics & numerical data , Palliative Care/statistics & numerical data , Adolescent , Child , Child, Preschool , Congenital Abnormalities/epidemiology , Congenital Abnormalities/therapy , Female , Humans , Infant , Infant, Newborn , Malaysia/epidemiology , Male , Neoplasms/epidemiology , Neoplasms/therapyABSTRACT
OBJECTIVE: To compare the linear growth and nutritional parameters of a group of Malaysian children with cerebral palsy (CP) against a group of controls, and to determine the nutritional, medical and sociodemographic factors associated with poor growth in children with CP. METHODOLOGY: The linear growth of 101 children with CP and of their healthy controls matched for age, sex and ethnicity was measured using upper-arm length (UAL). Nutritional parameters of weight, triceps skin-fold thickness and mid-arm circumference were also measured. Total caloric intake was assessed using a 24-h recall of a 3-day food intake and calculated as a percentage of the Recommended Daily Allowance. Multiple regression analysis was used to determine nutritional, medical and sociodemographic factors associated with poor growth (using z-scores of UAL) in children with CP. RESULTS: Compared with the controls, children with CP had significantly lower mean UAL measurements (difference between means -1.1, 95% confidence interval -1.65 to - 0.59), weight (difference between means -6.0, 95% CI -7.66 to -4.34), mid-arm circumference (difference between means -1.3, 95% CI -2.06 to -0.56) and triceps skin-fold thickness (difference between means -2.5, 95% CI -3.5 to -1.43). Factors associated with low z-scores of UAL were a lower percentage of median weight (P < 0.001), tube feeding (P < 0.001) and increasing age (P < 0.001). CONCLUSION: A large proportion of Malaysian children with CP have poor nutritional status and linear growth. Nutritional assessment and management at an early age might help this group of children achieve adequate growth.
