Dr. Hal Siden
This month brings several good citations, many of them abstracts from the Royal College of Paediatrics and Child Health (UK) annual conference. In this month’s review I am going to highlight 2 full-length research articles I found of interest and comment on a third one.
Two articles worth reading because they are well-done studies and have implications for practice:
- Beecham, E., et al. (2016). “Keeping all options open: Parents’ approaches to advance care planning.” Health Expect. 2016 Sep 26. doi: 10.1111/hex.12500. [Epub ahead of print]
- Zaal-Schuller, I. H., et al. (2016). “How parents and physicians experience end-of-life decision-making for children with profound intellectual and multiple disabilities.” Res Dev Disabil 59: 283-293. 2016 Sep 22;59:283-293. doi: 10.1016/j.ridd.2016.09.012. [Epub ahead of print]
The 3rd article is: Jarvis, S., et al. (2016). “How many children and young people with life-limiting conditions are clinically unstable? A national data linkage study.” Arch Dis Child. Published Online First: 28 September 2016 doi:10.1136/archdischild-2016-310800
For 20+ years we have been discussing and debating the numbers of children who might need PPC services. This began with an estimate made in the late 1980s based on weak data, and we have contended since then with how to count prevalence of children “at-risk” of dying from a disease-related cause. Work by Chris Feudtner, Richard Hain, Simon Lenton, and others with great support from the charity Together for Short Lives has moved this work forward.
Dr. Stuart Jarvis, Dr. Lorna Fraser, and colleagues from York University, Martin House Hospice, and the Children’s Hospice Association of Scotland (CHAS) use a sophisticated methodology to determine how many children [in Scotland] are ‘clinically unstable’ and therefore eligible /appropriate for pediatric palliative care services. Jarvis’s report is a secondary analysis from a larger study of children’s palliative care needs in Scotland. The overall estimate in that report is very high: 95.7/10,000 (and even higher for infants). Behind the research was previous work by Fraser et al to refine ICD-10 codes with validation against the linked databases and pediatric palliative care service records, thus generating a useful list of conditions where a shortened life is likely.
Jarvis’s secondary report focuses on those who are defined as unstable, deteriorating, or dying. The authors operationalized a concept recently developed as a model by Hughes-Hallet for the UK National Health Service. They used database linkage, including hospital and community encounter records, to determine the number of children going into hospital, ICU and dying. The clinically non-stable group is estimated at 13.7/10,000. This number compares favorably with estimates of children in need of PPC services derived from other studies, including the most recent Together for Short Lives report (16/10,000) and work we did in British Columbia (9.8-15.3/10,000).
We need to continue to work in this area; the estimates are getting better and suggest that we focus on the estimates for the non-stable group. Comparing those estimates to actual numbers of children followed at centres in the UK and Canada suggest that either the estimates remain too high, or we have a major referral gap. This needs to be an subject of active inquiry. There will never be a final “right” number, but within similar settings (e.g., highly industrialized settings), estimates should begin to coalesce. Getting agreed-upon estimates is important for program leaders who need to plan for service delivery and deliver messages to funders such as donors and governments.