1 40 1 Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource April 2019 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month April 2019 List URL Address <a href="http://doi.org/10.1136/archdischild-2017-312731" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1136/archdischild-2017-312731</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Individualised advance care planning in children with life-limiting conditions Publisher An entity responsible for making the resource available Archives of Disease in Childhood Date A point or period of time associated with an event in the lifecycle of the resource 2018 Subject The topic of the resource Child Health Services/og [Organization & Administration]; Palliative Care/og [Organization & Administration]; Netherlands; Palliative Care/st [Standards]; Quality of Health Care; Male; Practice Guidelines as Topic; Advance Care Planning/og [Organization & Administration]; Parents/px [Psychology]; Child; Humans; Palliative Care/px [Psychology]; Female; Attitude to Health; Pilot Projects; Advance Care Planning/st [Standards]; Child Health Services/st [Standards]; Evidence-Based Medicine/mt [Methods]; Patient Satisfaction/sn [Statistics & Numerical Data] Creator An entity primarily responsible for making the resource Loeffen EAH; Tissing WJE; Schuiling-Otten MA; de Kruiff CC; Kremer L C M; Verhagen AA; Pediatric Palliative Care-Individualized Care Plan Working Group Description An account of the resource INTRODUCTION: In 2013, the Pediatric Association of the Netherlands launched an evidence-based guideline 'Palliative care for children'. To promote implementation in daily practice and hereby improve quality of paediatric palliative care, we aimed to develop a functional individualised paediatric palliative care plan (IPPCP) that covers physical, psychological, spiritual and social functioning, with great emphasis on the guideline's recommendations, advance care planning and patients' and parents' preferences and desires. METHODS: A Dutch working group (28 individuals) with a strong multidisciplinary character developed a draft IPPCP, which was piloted retrospectively and prospectively. In the pilots we completed, the IPPCPs for patients who were recently diagnosed with a life-threatening or life-limiting condition and evaluated completeness, usability and user-friendliness. RESULTS: The final IPPCP comprised five domains: (1) IPPCP data, (2) basics, (3) social, (4) psychosocial and spiritual and (5) physical care. Each domain covered various components. In both pilots, the IPPCP was considered a comprehensive document that covered all areas of paediatric palliative care and was experienced as an improvement to the present situation. However, the current form was regarded to lack user-friendliness. CONCLUSION: We propose a set of essential components of a comprehensive IPPCP for paediatric palliative care with extra attention for advance care planning and anticipatory action. Patients' and parents' preferences and desires are included next to the recommendations of the evidence-based guideline 'Palliative care for children'. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/archdischild-2017-312731" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-312731</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2018 Advance Care Planning/og [Organization & Administration] Advance Care Planning/st [Standards] April 2019 List Archives of Disease in Childhood Attitude To Health Child Child Health Services/og [organization & Administration] Child Health Services/st [Standards] de Kruiff CC Evidence-Based Medicine/mt [Methods] Female Humans Kremer L C M Loeffen EAH Male Netherlands Palliative Care/og [Organization & Administration] Palliative Care/px [psychology] Palliative Care/st [standards] Parents/px [psychology] Patient Satisfaction/sn [Statistics & Numerical Data] Pediatric Palliative Care-Individualized Care Plan Working Group Pilot Projects Practice Guidelines As Topic Quality Of Health Care Schuiling-Otten MA Tissing WJE Verhagen AA