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The development of an instrument that can identify children with palliative care needs: the Paediatric Palliative
Eva Bergstraesser1, Richard D Hain, José L Pereira
1Department of Palliative Care and Oncology, University Children's Hospital Zurich, Steinwiesstrasse 75, CH-8032, Zurich, Switzerland. eva.bergstraesser@kispi.uzh.ch.
Insights
A new screening tool helps identify children with life-limiting illnesses who need paediatric palliative care earlier. This supports timely intervention and improves care for seriously ill children.
Area of Science:
- Paediatric Palliative Care
- Medical Screening Instruments
- Child Health Outcomes
Background:
- Paediatric palliative care is often introduced late in the disease course for children with life-limiting conditions.
- Timely identification of eligible children is crucial for effective palliative care integration.
Purpose of the Study:
- To develop a screening instrument for pediatricians to improve early identification of children benefiting from palliative care.
- To address the late referral patterns in paediatric palliative care.
Main Methods:
- Qualitative study employing semi-structured interviews with international experts (Part 1).
- Focus group discussion with paediatric health professionals (Part 2).
- Instrument domains and items were defined through expert and professional input.
Main Results:
- Five key domains identified for screening: disease trajectory, treatment outcomes/burden, symptom burden, stakeholder preferences, and life expectancy.
- The instrument aims to facilitate a stepwise introduction of palliative care.
- Preliminary validation indicated early validity and value.
Conclusions:
- A novel screening instrument was developed to aid timely paediatric palliative care initiation.
- The instrument shows promise in facilitating earlier access to palliative care for severely ill children.
- Early validation suggests the instrument is a valuable tool for improving paediatric palliative care delivery.
Background:
The introduction of paediatric palliative care and referral to specialised teams still occurs late in the illness trajectory of children with life-limiting diseases. The aim of this ongoing multipart study was to develop a screening instrument for paediatricians that would improve the timely identification of children who could benefit from a palliative care approach.
Methods:
We used a qualitative study approach with semi-structured interviews (Part 1) and a focus group discussion (Part 2) to define the domains and items of the screening instrument. Seven international paediatric palliative care experts from the UK, France, USA, and Canada took part in face-to-face interviews, and eleven paediatric health professionals from the University Children's Hospital, Zurich, participated in a subsequent focus group discussion.
Results:
This preliminary phase of development and validation of the instrument revealed five domains relevant to identifying children with life-limiting diseases, who could benefit from palliative care: 1) trajectory of disease and impact on daily activities of the child; 2) expected outcome of disease-directed treatment and burden of treatment; 3) symptom and problem burden; 4) preferences of patient, parents or healthcare professional; and 5) estimated life expectancy. Where palliative care seems to be necessary, it would be introduced in a stepwise or graduated manner.
Conclusions:
This study is a preliminary report of the development of an instrument to facilitate timely introduction of palliative care in the illness trajectory of a severely ill child. The instrument demonstrated early validity and was evaluated as being a valuable approach towards effective paediatric palliative care.
