Research in paediatric palliative care
A blog post written by Dr. Anthony Herbert and Dr. Ross Drake
Children represent 25 years of striking physical, emotional, cognitive and spiritual development making for a hugely diverse group of individuals. The changes seen over time affect the drugs used by influencing their effects, disposition and adverse reactions. The majority of medications coming to market have a poorly studied safety profile in children and many are used “off-label” in unsuitable dosing forms. These factors combined with the need for continuous dose adjustments increases the risk of medication errors and adverse drug reactions (ADRs).
However, the identification and attribution of ADRs in paediatric palliative care (PPC) is challenging. For example, fatigue and confusion associated with medicines may be difficult to determine in a child with severe neurological disability or distinguish from clinical decline and perhaps misattributed because of the pervasive assumption by clinicians, patients and their families that dying brings with it a collection of inevitable symptoms.
The gold standard to improve the evidence base for clinical medicine prescribing is the randomised controlled trial but these are expensive and complex. Other research methods including descriptive cohort studies such as the RAPID Program can add to the knowledge for clinical prescribing in the target audience – everyday PPC practice.
RAPID is an international, multi-site, consecutive cohort, post-marketing study of the real-world net clinical effects (benefits and harms) of medications and non-pharmacological interventions used in PPC. The RAPID methodology uses active surveillance to provide data on medications or non-pharmacological interventions from the time of prescribing over a predetermined period. It requires minimal resources, is timely and publishes each outcome to add to the knowledge for clinical prescribing and use of non-pharmacological therapies that are commonplace in PPC practice.
We look forward to discussing RAPID as part of the research in paediatric palliative care workshop at the Australian Paediatric Palliative Care Conference 2022.
References
An example of a Rapid Study
- Pharmacovigilance in hospice/palliative care: rapid report of net clinical effect of Currow DC, Vella-Brincat J, Fazekas B, Clark K, Doogue M, Rowett D. Pharmacovigilance in hospice/palliative care: rapid report of net clinical effect of metoclopramide. J Palliat Med. 2012 Oct;15(10):1071-5. doi: 10.1089/jpm.2012.0111. Epub 2012 Jul 30.
Research Needs in Paediatric Palliative Care
- Baker JN, Levine DR, Hinds PS, Weaver MS, Cunningham MJ, Johnson L, Anghelescu D, Mandrell B, Gibson DV, Jones B, Wolfe J, Feudtner C, Friebert S, Carter B, Kane JR. Research Priorities in Pediatric Palliative Care. J Pediatr. 2015 Aug;167(2):467-70.e3. doi: 10.1016/j.jpeds.2015.05.002. Epub 2015 May 28.
- Steele R, Bosma H, Johnston MF, Cadell S, Davies B, Siden H, Straatman L. Research priorities in pediatric palliative care: a Delphi study. J Palliat Care. 2008 Winter;24(4):229-39.
Dr. Anthony Herbert
Director
Paediatric Palliative Care Service - Division of Medicine
Children’s Health Queensland, Australia
Dr. Ross Drake
Clinical Lead of the Paediatric Palliative Care and Complex Pain Services
Starship Children’s Hospital, Auckland, New Zealand