Low Joseph, Vickerstaff Victoria, Davis Sarah, Bichard Julia, Greenslade Lynda, Hopkins Katherine, Marshall Aileen, Thorburn Douglas, Jones Louise
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
Department of Palliative Care, Royal Free London NHS Foundation Trust, London, UK.
Frontline Gastroenterol. 2016 Jan;7(1):4-9. doi: 10.1136/flgastro-2015-100613. Epub 2015 Jul 24.
To determine the knowledge and practice patterns of a UK cohort of relevant healthcare professionals (HCPs) about delivering palliative care in cirrhosis, and to inform priorities for future research.
An on-line questionnaire survey with closed and open responses.
HCPs identified from the mailing list of special interest groups in hepatology and gastroenterology (liver), general practice and specialist palliative care (SPC) across the UK.
Of the 6181 potential contacts identified, 517 HCPs responded. Most believed a role exists for SPC in caring for people with cirrhosis, but many SPC HCPs felt ill prepared to provide good care to those facing death. Further training was needed in managing liver-related symptoms, symptom control and end of life issues. All HCP groups wished to increase community provision of palliative care support, but many general practitioners felt unable to manage advanced cirrhosis in the community. There were differences in the optimal trigger for SPC referral with liver HCPs less likely to refer at symptom deterioration. Prognostication, symptom management and service configuration were key areas identified for future research.
All who responded acknowledged the role of SPC in caring for those dying with cirrhosis and need for further training to improve confidence and enable joint working between SPC, general practice and liver teams. Low response rates make it difficult to generalise these findings, which require further validation.
确定英国一组相关医疗保健专业人员（HCPs）在肝硬化患者姑息治疗方面的知识和实践模式，并为未来研究的重点提供参考。
一项包含封闭式和开放式回答的在线问卷调查。
从英国肝病学和胃肠病学（肝脏）、全科医疗以及专科姑息治疗（SPC）特别兴趣小组的邮件列表中识别出的HCPs。
在识别出的6181名潜在联系人中，有517名HCPs做出了回应。大多数人认为SPC在照顾肝硬化患者方面发挥着作用，但许多SPC的HCPs觉得没有做好为面临死亡的患者提供优质护理的准备。在管理肝脏相关症状、症状控制和临终问题方面需要进一步培训。所有HCPs群体都希望增加社区姑息治疗支持的提供，但许多全科医生觉得无法在社区管理晚期肝硬化。在SPC转诊的最佳触发因素方面存在差异，肝脏领域的HCPs在症状恶化时转诊的可能性较小。预后、症状管理和服务配置是确定的未来研究关键领域。
所有做出回应的人都承认SPC在照顾肝硬化临终患者方面的作用，以及需要进一步培训以提高信心，并促进SPC、全科医疗和肝脏团队之间的联合工作。低回应率使得难以将这些发现进行推广，这些发现需要进一步验证。
