OP-25 Improving parallel planning in trisomy 18 and 13

<h3>Background</h3> West Midlands Perinatal Palliative Care Service (WMPPCS) is the busiest such service in the United Kingdom with 62 referrals for the 12 months 2023 to 2024 to date. A large cohort of babies with Trisomy 18 and 13 are referred to this service. These conditions are associated with poor outcomes such that colloquially has been described as ‘incompatible with life’. Increasingly services involved are recognising a variety of outcomes though, and questions about what interventions should be offered are being raised. Parallel planning varies and may or may not include offers of a doctor attending delivery, subspecialist review, access to respiratory support, access to Neonatal Intensive Care Units and surgical intervention. This balance between recognising potential to survive and need best possible care, and poor average survival makes care complex to navigate. <h3>Objectives</h3> We reviewed the number of babies with a trisomy 18 or 13 diagnosis referred to the service and reviewed what service was provided, what interventions were undertaken and for those babies that died what their length of survival was. Using this information we hope to broaden understanding of possible outcomes and precedent clinical journeys to improve and provide consistency in parallel planning for these babies. <h3>Results</h3> In total 25 babies were referred with Trisomy 18 and 6 with Trisomy 13 from November 2021 to May 2024 (2 years 7 months). There was a variance in approach to care during pregnancy including whether or not subspecialty reviews were offered. After birth there was a variance in approach to formalising diagnosis if amniocentesis had been declined. At birth different approaches to care were offered including around access to NICU admission, provision of respiratory support and other resuscitation measures. Interventions provided included surgery before and after formalised diagnosis. Prognosis varied, with a large cohort not surviving to delivery (8 trisomy 18; 1 trisomy 13), many having short lives (11 trisomy 18; 4 trisomy 13) a cohort continuing to survive at time of writing (6 trisomy 18; 1 trisomy 13). <h3>Discussion</h3> Our findings support clinicians having an open mind in their approach to families with a baby diagnosed with or highly likely to have trisomy 18. True parallel planning, a cornerstone of palliative care, should include planning for both the best and worst possible outcomes. Families need to be aware of the possibility of IUFD but also extended time at home together to help them navigate choices effectively. Care that supports both pathways should be carefully considered, alongside an understanding of the family’s goals and preferences.

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Journal
Oral Presentations
Published
2024-09-01
DOI
https://doi.org/10.1136/spcare-2024-anzspm.25
Primary Topic
Medical Coding and Health Information
Type
article
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article

OP-25 Improving parallel planning in trisomy 18 and 13

Christine Mott
Oral Presentations
Medical Coding and Health Information
article

OP-25 Improving parallel planning in trisomy 18 and 13

Christine Mott
article en

Abstract

<h3>Background</h3> West Midlands Perinatal Palliative Care Service (WMPPCS) is the busiest such service in the United Kingdom with 62 referrals for the 12 months 2023 to 2024 to date. A large cohort of babies with Trisomy 18 and 13 are referred to this service. These conditions are associated with poor outcomes such that colloquially has been described as ‘incompatible with life’. Increasingly services involved are recognising a variety of outcomes though, and questions about what interventions should be offered are being raised. Parallel planning varies and may or may not include offers of a doctor attending delivery, subspecialist review, access to respiratory support, access to Neonatal Intensive Care Units and surgical intervention. This balance between recognising potential to survive and need best possible care, and poor average survival makes care complex to navigate. <h3>Objectives</h3> We reviewed the number of babies with a trisomy 18 or 13 diagnosis referred to the service and reviewed what service was provided, what interventions were undertaken and for those babies that died what their length of survival was. Using this information we hope to broaden understanding of possible outcomes and precedent clinical journeys to improve and provide consistency in parallel planning for these babies. <h3>Results</h3> In total 25 babies were referred with Trisomy 18 and 6 with Trisomy 13 from November 2021 to May 2024 (2 years 7 months). There was a variance in approach to care during pregnancy including whether or not subspecialty reviews were offered. After birth there was a variance in approach to formalising diagnosis if amniocentesis had been declined. At birth different approaches to care were offered including around access to NICU admission, provision of respiratory support and other resuscitation measures. Interventions provided included surgery before and after formalised diagnosis. Prognosis varied, with a large cohort not surviving to delivery (8 trisomy 18; 1 trisomy 13), many having short lives (11 trisomy 18; 4 trisomy 13) a cohort continuing to survive at time of writing (6 trisomy 18; 1 trisomy 13). <h3>Discussion</h3> Our findings support clinicians having an open mind in their approach to families with a baby diagnosed with or highly likely to have trisomy 18. True parallel planning, a cornerstone of palliative care, should include planning for both the best and worst possible outcomes. Families need to be aware of the possibility of IUFD but also extended time at home together to help them navigate choices effectively. Care that supports both pathways should be carefully considered, alongside an understanding of the family’s goals and preferences.

Oral Presentations
Birmingham Women’s and Children’s NHS Foundation Trust (GB)
Sustainable cities and communities
Openalex Percentile: Top 81%
Medical Coding and Health Information
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