影響兒童安寧緩和醫療利用之相關因素探討：2012至2023年病歷回顧

Abstract

背景與目的：兒童安寧緩和醫療(Pediatric Palliative Care, PPC)旨在減輕兒童及其家庭在面臨生命威脅性疾病或不可逆的絕症時的痛苦，並提升生活品質。儘管已有多項研究證實安寧緩和的重要性與迫切需求，但國內的臨床現況及Wu et al.(2023)基於健保資料庫的回溯性研究顯示，兒童多在生命末期才接受安寧緩和醫療服務，導致參與偏低且參與時長過短，削弱了安寧緩和之效益。為建立更完善的兒童安寧緩和醫療系統，並提供更適切的臨終照護，本研究採用病歷回顧方式，深入探討兒童安寧緩和醫療利用的趨勢及其影響因素，並進行相關變項的分析與預測。本研究目的包括：1. 探討兒童安寧緩和醫療利用的趨勢；2. 比較兒童安寧緩和醫療利用與兒童人口統計學及臨床特徵之間的差異；3. 確定影響兒童安寧緩和醫療利用之預測因素。 方法：採用回溯性縱貫性研究設計(Retrospective longitudinal study design)，並以Andersen醫療服務利用行為模式作為研究架構。研究對象為2012年1月至2023年12月間於台北市某醫學中心兒童醫院接受治療並過世的1至18歲兒童。資料來源包括其生前安寧緩和醫療的利用情形及死亡前的醫療照護病歷。研究工具為自擬紀錄表，內容涵蓋四大部分：(一)死亡兒童基本屬性；(二)死亡兒童家庭背景；(三)兒童死亡相關資料；(四)兒童生命末期醫療照護。資料經整理與編碼後，使用SPSS 28.0進行統計分析。描述性統計包括次數分佈、百分比、平均值及標準差，用以呈現兒童安寧緩和醫療利用的趨勢；推論性統計包括卡方檢定(Chi-square)、獨立樣本t檢定(Independent t-test)及單因子變異數分析(ANOVA)，用以比較兒童安寧緩和醫療利用與兒童人口統計學及臨床特徵之間的差異；羅吉斯迴歸(Logistic regression)及廣義線性迴歸(Generalized linear regression)用於確定影響兒童安寧緩和醫療利用的預測因素。 結果：12年研究期間，兒童安寧緩和醫療的參與顯著提升（增幅4.596倍），但參與時長逐漸縮短（減幅50％）。死亡前一個月內接受心肺復甦術(CPR)是影響兒童安寧緩和醫療參與及參與時長的共同預測因素。較不可能參與安寧緩和醫療的兒童特徵包括：父親教育程度較低、母親教育程度中等、於兒童安寧緩和醫療個案管理系統建立前去世、診斷為非癌症、未簽署DNR同意書，以及死亡前一個月內接受CPR的個案。 結論：本研究揭示了兒童安寧緩和醫療利用的趨勢及其影響因素，並突顯近年來該領域的進展與尚需加強之處。研究結果提供了實證基礎，支持兒科醫療體系推動以家庭為中心的照護模式，進一步提升對生命限制性疾病兒童及其家庭的支持及其生活品質。

Background: Pediatric Palliative Care(PPC) aims to alleviate suffering and improve the quality of life for children with life-limiting illnesses and their families. Despite its recognized importance and urgent need, current clinical practices in Taiwan and retrospective research by Wu et al.(2023) using the National Health Insurance database reveal that PPC services are often initiated only in the final stages of life, thereby limiting their effectiveness. To address these gaps and establish a more comprehensive PPC system for appropriate end-of-life care, this study adopts a chart review approach to explore trends, differences, and predictive factors influencing PPC utilization. The study aims to(1) describe trends in PPC utilization among children from 2012 to 2023; (2) analyze the association between PPC utilization based on children's demographic and clinical characteristics; and(3) identify factors predicting PPC utilization. Methods: This retrospective longitudinal study, guided by Andersen's healthcare utilization model as its theoretical framework, analyzed medical records of children aged 1 to 18 years who received treatment and died at a children’s hospital in a Taipei City medical center between January 2012 and December 2023. A self-designed recording form was used as tools, consisting of four sections:(1) Children’s basic demographic information;(2) Family background;(3) Death-related information;(4) End-of-life medical care. Data were coded and analyzed using SPSS 28.0. Descriptive statistics, including frequency(n), percentages(%), means, and standard deviations(SD), were applied, while logistic regression and generalized linear regression were used for inferential analysis to explore factors influencing PPC utilization. Findings: Over the 12-year study period, PPC enrollment increased significantly(4.596-fold), while PPC duration decreased gradually(50%). CPR administration within the last month of life was identified as a significant predictor of both PPC enrollment and duration. Children less likely to enroll in PPC services were those whose fathers had a lower level of education, mothers had a moderate level of education, passed away before the establishment of the PPC case management system, non-cancer diagnoses, lack of a signed Do-Not-Resuscitate(DNR) order, and received CPR within the last month of life. Conclusion: This study highlights the trends and predictors of PPC utilization, revealing significant progress while also identifying areas needing further improvement. The findings provide evidence-based insights to support the development of family-centered care models in pediatric healthcare systems, ultimately enhancing support and quality of life for children with life-limiting conditions and their families.