title: Paediatric palliative care at home: a single centre's experience.
abstract: BACKGROUND
  There is increased awareness of paediatric palliative care in Malaysia, but no local published data on home care services. We aimed to describe the paediatric experience at Hospis Malaysia, a community-based palliative care provider in Malaysia.
  
  
  METHODS
  We conducted a retrospective case note review of patients aged up to 21 years who were referred to Hospis Malaysia from 2009 to 2013.
  
  
  RESULTS
  A total of 137 patients (92 male, 45 female) with a median age of 140 (3-250) months were included in this study. The majority (71.5%) had malignancies. At referral, 62 patients were still in hospital and 17 died prior to discharge. A total of 108 patients received home visits. At the first home visit, 89.8% of patients had at least one physical symptom. Pain was the most common (52.5%) symptom. Patients had various supportive devices: 39 were on feeding tubes, ten had tracheostomies, five were on bilevel positive airway pressure and ten had urinary catheters. 66 families discussed the preferred location of care at end-of-life. Among those who died, 78.9% died at home, as they preferred (p < 0.001). Regression analysis showed no statistically significant association between a home death and age, diagnosis and number of home visits. Bereavement follow-up occurred for 93.3% of families.
  
  
  CONCLUSIONS
  Community care referrals tend to occur late, with 25.5% of patients dying within two weeks of referral. At referral, patients often had untreated physical symptoms. The majority of families preferred and had a home death.
authors.affiliation: Department of Paediatrics, Hospis Malaysia, Kuala Lumpur, Malaysia.
authors.forename: Lee Ai
authors.initials: LA
authors.lastname: Chong
authors.affiliation: Department of Paediatrics, University Putra Malaysia, Selangor, Malaysia.
authors.forename: Farah
authors.initials: F
authors.lastname: Khalid
mesh_terms: D002423:Cause of Death / Q000639:trends; D002675:Child, Preschool; D005260:Female; D005500:Follow-Up Studies; D006699:Home Care Services / Q000458:organization & administration*; D006801:Humans; D007223:Infant; D008296:Malaysia / Q000453:epidemiology; D008297:Male; D009369:Neoplasms / Q000401:mortality / Q000628:therapy*; D010166:Palliative Care / Q000458:organization & administration*; D012189:Retrospective Studies; D015996:Survival Rate / Q000639:trends
keywords: home care; location of death; paediatric; palliative care