Sidharth Vemuri1,2, Louise Baker2,3, Katrina Williams2,4,5, Jenny Hynson1,4. 1. Victorian Paediatric Palliative Care Program, Royal Children's Hospital Melbourne, Melbourne, Victoria, Australia. 2. Department of Neurodevelopment and Disability, Royal Children's Hospital Melbourne, Melbourne, Victoria, Australia. 3. Victorian Paediatric Rehabilitation Service, Royal Children's Hospital Melbourne, Melbourne, Victoria, Australia. 4. Department of Paediatrics, University of Melbourne, Melbourne, Victoria, Australia. 5. Murdoch Children's Research Institute, Melbourne, Victoria, Australia.
Abstract
AIM: To describe the clinical course for children with severe physical disability (SPD) in the 2 years prior to their death and to identify whether these children had palliative care involvement and advance care planning prior to death. To investigate whether there is a difference between children with progressive (PSPD) and non-progressive (NPSPD) aetiologies of SPD. METHODS: A retrospective cohort analysis of 48 children with SPD who died between 1 January 2013 and 1 January 2015 at The Royal Children's Hospital, Melbourne. Clinical charts were reviewed to collect data about the type of SPD, frequency and duration of hospital admissions, duration of palliative care involvement (if any) and presence of an advance care plan. RESULTS: The majority of children were admitted in the 6 months before their death, and over a third were admitted to the intensive care unit. There was a significant increase in the frequency of hospital admissions as the study cohort approached death (P = 0.003). The majority of children with SPD were offered a referral to a palliative care service, with referrals more likely in children with PSPD (90%) compared to children with NPSPD (57%). While approximately 60% of children in each cohort had an advance care plan, there was a trend towards this being formalised earlier in children with PSPD (P = 0.09). CONCLUSION: The increase in hospital admissions prior to death in children with SPD suggests an opportunity for greater consistency in offering advanced care planning and palliative care, especially to those with NPSPD.
AIM: To describe the clinical course for children with severe physical disability (SPD) in the 2 years prior to their death and to identify whether these children had palliative care involvement and advance care planning prior to death. To investigate whether there is a difference between children with progressive (PSPD) and non-progressive (NPSPD) aetiologies of SPD. METHODS: A retrospective cohort analysis of 48 children with SPD who died between 1 January 2013 and 1 January 2015 at The Royal Children's Hospital, Melbourne. Clinical charts were reviewed to collect data about the type of SPD, frequency and duration of hospital admissions, duration of palliative care involvement (if any) and presence of an advance care plan. RESULTS: The majority of children were admitted in the 6 months before their death, and over a third were admitted to the intensive care unit. There was a significant increase in the frequency of hospital admissions as the study cohort approached death (P = 0.003). The majority of children with SPD were offered a referral to a palliative care service, with referrals more likely in children with PSPD (90%) compared to children with NPSPD (57%). While approximately 60% of children in each cohort had an advance care plan, there was a trend towards this being formalised earlier in children with PSPD (P = 0.09). CONCLUSION: The increase in hospital admissions prior to death in children with SPD suggests an opportunity for greater consistency in offering advanced care planning and palliative care, especially to those with NPSPD.
Authors: Noula Gibson; Amanda M Blackmore; Anne B Chang; Monica S Cooper; Adam Jaffe; Wee-Ren Kong; Katherine Langdon; Lisa Moshovis; Karolina Pavleski; Andrew C Wilson Journal: Dev Med Child Neurol Date: 2020-08-09 Impact factor: 5.449