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Individualised advance care planning in children with life-limiting conditions

Erik A H Loeffen1, Wim J E Tissing1, Meggi A Schuiling-Otten2

  • 1Department of Pediatric Oncology/Hematology, University of Groningen, Beatrix Children's Hospital, University Medical Center Groningen, Groningen, The Netherlands.

Archives of Disease in Childhood
|November 12, 2017
PubMed

Insights

A new individualized pediatric palliative care plan (IPPCP) was developed to improve care quality, incorporating patient preferences and guideline recommendations. While comprehensive, the plan requires further refinement for user-friendliness.

Area of Science:

  • Pediatric Palliative Care
  • Clinical Practice Guidelines
  • Healthcare Planning

Background:

  • The Pediatric Association of the Netherlands introduced an evidence-based guideline for pediatric palliative care in 2013.
  • There was a need to enhance the implementation of this guideline into daily practice.
  • Improving the quality of pediatric palliative care services was a primary objective.

Purpose of the Study:

  • To develop a functional individualized pediatric palliative care plan (IPPCP).
  • To ensure the IPPCP covers physical, psychological, spiritual, and social functioning.
  • To emphasize guideline recommendations, advance care planning, and patient/parent preferences.

Main Methods:

  • A multidisciplinary working group developed a draft IPPCP.
  • The draft plan underwent retrospective and prospective piloting.
  • Evaluation focused on completeness, usability, and user-friendliness for patients with life-threatening or life-limiting conditions.

Main Results:

  • The final IPPCP includes five domains: data, basics, social, psychosocial/spiritual, and physical care.
  • The IPPCP was recognized as a comprehensive document covering all essential areas of pediatric palliative care.
  • Both pilots indicated the IPPCP was an improvement over existing practices, but user-friendliness needs enhancement.

Conclusions:

  • A set of essential components for a comprehensive IPPCP has been proposed.
  • The IPPCP emphasizes advance care planning and anticipatory actions.
  • Patient and parent preferences are integrated alongside evidence-based guideline recommendations.
Abstract

Keywords:
advance care planningchildrenindividualized care planlife-threatening or life-limiting conditionspalliative care

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