@article {Loeffenarchdischild-2017-312731, author = {Erik A H Loeffen and Wim J E Tissing and Meggi A Schuiling-Otten and Chris C de Kruiff and Leontien C M Kremer and A A Eduard Verhagen and Pediatric Palliative Care{\textemdash}Individualized Care Plan Working Group}, editor = {Ball, LM and Bindels-de Heus, GCB and Dabekaussen, TRRM and de Groot, MAR and de Jong, M and Kars, MC and Kasten, J and Koot, MCM and Krouwel, N and de Meij, MA and Michiels, EMC and Potters, M and Schouten-van Meeteren, AYN and Spits, R and Vallianatos, S and van Walraven, SM}, title = {Individualised advance care planning in children with life-limiting conditions}, elocation-id = {archdischild-2017-312731}, year = {2017}, doi = {10.1136/archdischild-2017-312731}, publisher = {BMJ Publishing Group Ltd}, abstract = {Introduction In 2013, the Pediatric Association of the Netherlands launched an evidence-based guideline {\textquoteleft}Palliative care for children{\textquoteright}. 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{\textquoteright}s recommendations, advance care planning and patients{\textquoteright} and parents{\textquoteright} 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{\textquoteright} and parents{\textquoteright} preferences and desires are included next to the recommendations of the evidence-based guideline {\textquoteleft}Palliative care for children{\textquoteright}.}, issn = {0003-9888}, URL = {https://adc.bmj.com/content/early/2017/11/14/archdischild-2017-312731}, eprint = {https://adc.bmj.com/content/early/2017/11/14/archdischild-2017-312731.full.pdf}, journal = {Archives of Disease in Childhood} }