Hướng dẫn chăm sóc giảm nhẹ trẻ em của Hà Lan: tổng quan hệ thống và khuyến nghị dựa trên bằng chứng về điều trị triệu chứng

BMC Palliative Care - Tập 23 Số 1
Kim C. van Teunenbroek, Renée L. Mulder, Inge M. L. Ahout, Karen G. C. B. Bindels‐de Heus, Colin Gelder, Annemie F. S. Galimont-Collen, Marieke Groot, Katja M. J. Heitink‐Pollé, Jeffry Looijestijn, Maarten Mensink, Sasja F. Mulder, Jolanda Schieving, Antoinette Y. N. Schouten–van Meeteren, Johannes Verheijden, Hester Rippen, Brigitt C. M. Borggreve, Leontien C. M. Kremer, Eduard Verhagen, Erna Michiels, Mattijs Alsem, Esther M. M. van den Bergh, Govert Brinkhorst, Arno Colenbrander, L. J. A. Corel, J. van Dijk, Laurent Favié, Karin Geleijns, Saskia J. Gischler, Lisette ‘t Hart-Kerkhoffs, Hanneke Heinen, Cindy Joosen, Carla C. M. Juffermans, Hennie Knoester, Barbara de Koning, Tom de Leeuw, Hilda Mekelenkamp, Mariska P. Nieuweboer, Sebastianus B. J. Oude Ophuis, Suzanne G.M.A. Pasmans, Elise M. van de Putte, Emmy Räkers, Irma M. Rigter, Christel D. Rohrich, Elisabeth J. Ruijgrok, Kim van der Schoot, Ellen Siegers-Bennink, Henriette Sjouwke, Tanneke Snijders-Groenendijk, Suzanne van de Vathorst, Leo van Vlimmeren, Anne Weenink, Willemien de Weerd, I.H. Zaal-Schuller

Tóm tắt

Tóm tắt Thông tin tổng quan Trẻ em mắc các bệnh đe dọa tính mạng và giới hạn cuộc sống có thể trải qua mức độ đau khổ cao do nhiều triệu chứng gây khó chịu dẫn đến chất lượng cuộc sống kém và tăng nguy cơ căng thẳng lâu dài cho các thành viên trong gia đình. Cần có điều trị triệu chứng chất lượng cao cho tất cả trẻ em và gia đình của họ, đặc biệt là vào thời điểm cuối đời. Trong bài báo này, chúng tôi cung cấp các khuyến nghị dựa trên bằng chứng cho việc điều trị triệu chứng ở bệnh nhân chăm sóc giảm nhẹ nhi khoa nhằm tối ưu hóa việc chăm sóc. Phương pháp Một nhóm đa ngành gồm 56 chuyên gia trong lĩnh vực chăm sóc giảm nhẹ nhi khoa và chín phụ huynh (đang trong giai đoạn tang chế) đã được thành lập để phát triển các khuyến nghị về điều trị triệu chứng trong chăm sóc giảm nhẹ nhi khoa, bao gồm lo âu và trầm cảm, mê sảng, khó thở, triệu chứng huyết học, ho, các vấn đề về da, buồn nôn và nôn, triệu chứng thần kinh, đau đớn, tiếng thở khi chết, mệt mỏi, an thần giảm nhẹ ở trẻ em và từ bỏ sự cung cấp nước và dinh dưỡng. Các khuyến nghị được dựa trên bằng chứng từ tìm kiếm tài liệu hệ thống, các nguồn tài liệu bổ sung (chẳng hạn như hướng dẫn), chuyên gia lâm sàng và giá trị của bệnh nhân cùng gia đình. Chúng tôi đã sử dụng phương pháp GRADE để đánh giá bằng chứng. Các phụ huynh được đưa vào ban chỉ đạo hướng dẫn để đảm bảo đại diện cho giá trị của bệnh nhân và gia đình. Kết quả Chúng tôi đã đưa vào tổng cộng 18 nghiên cứu báo cáo về hiệu quả của các can thiệp (không) dược lý cụ thể để điều trị triệu chứng trong chăm sóc giảm nhẹ nhi khoa. Một vài trong số các can thiệp này cho thấy sự cải thiện đáng kể trong việc giảm triệu chứng. Bằng chứng này chỉ có thể (một phần) trả lời tám trong số 27 câu hỏi lâm sàng. Chúng tôi đã đưa vào 29 hướng dẫn và hai sách giáo khoa như tài liệu bổ sung để giải quyết sự thiếu bằng chứng. Tổng cộng, chúng tôi đã xây dựng 221 khuyến nghị về điều trị triệu chứng trong chăm sóc giảm nhẹ nhi khoa dựa trên bằng chứng, tài liệu bổ sung, chuyên môn lâm sàng và giá trị của bệnh nhân và gia đình. Kết luận Dù bằng chứng hiện có về các can thiệp liên quan đến triệu chứng trong chăm sóc giảm nhẹ nhi khoa đã tăng lên, nhưng vẫn còn thiếu hụt bằng chứng trong lĩnh vực này. Chúng tôi kêu gọi sự hợp tác quốc tế giữa các ngành, các tổ chức đa dạng để tiến hành nghiên cứu chất lượng cao và góp phần vào việc tối ưu hóa việc giảm triệu chứng trong chăm sóc giảm nhẹ cho tất cả trẻ em trên toàn thế giới.

Từ khóa


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Tập 23 Số 1

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