Research Assistant, Oncology Advanced Nurse Practitioner, European Oncology Nursing Society (EONS), Brussels, Belgium.
Associate Professor, School of Nursing, Psychotherapy and Community Health, Dublin City University, Dublin, Ireland.
Semin Oncol Nurs. 2023 Aug;39(4):151409. doi: 10.1016/j.soncn.2023.151409. Epub 2023 Apr 1.
There is little research to help health care professionals understand what patient outcomes are considered a priority in advanced liver or kidney cancer. Knowing what is important to patients can help promote person-centered approaches to treatment and disease management. The aim of this study was to identify those patient-reported outcomes (PROs) that patients, carers, and health care professionals consider as "core" when providing care to those with advanced liver or kidney cancer.
A three-round Delphi study was undertaken to ask experts by profession or experience to rank PROs identified from a previous literature review. Fifty-four experts, including people living with advanced liver or kidney cancer (44.4%), family members and caregivers (9.3%), and health care professionals (46.8%), reached consensus on 49 PROs including 12 new items (eg, palpitations, hopefulness, or social isolation). Items with the highest rate of consensus included quality of life, pain, mental health, and capacity to do daily activities.
People living with advanced liver or kidney cancer experience complex health care needs. Some important outcomes were not actually captured in practice in this population and were suggested as part of this study. There are discrepancies between the views of health care professionals, patients, and family in what is important, highlighting the need of using measures to facilitate communication.
Identification of priority PROs reported here will be key to facilitate more focused patient assessments. The actual use of measures in cancer nursing practice to allow monitoring of PROs must be tested for feasibility and usability.
针对晚期肝或肾肿瘤患者，医疗保健专业人员对哪些患者结果应作为优先事项知之甚少。了解患者的需求有助于促进以患者为中心的治疗和疾病管理方法。本研究旨在确定患者、护理人员和医疗保健专业人员在为晚期肝或肾肿瘤患者提供护理时认为“核心”的患者报告结果（PRO）。
采用三轮德尔菲研究，要求专业或经验专家对从先前文献综述中确定的 PRO 进行排名。54 名专家（包括 44.4%的晚期肝或肾肿瘤患者、9.3%的家庭成员和护理人员以及 46.8%的医疗保健专业人员）就 49 项 PRO 达成共识，其中包括 12 项新条目（例如心悸、希望或社会隔离）。具有最高共识率的项目包括生活质量、疼痛、心理健康和日常活动能力。
晚期肝或肾肿瘤患者的医疗保健需求复杂。该人群的实际实践中并未实际涵盖一些重要的结果，并且在本研究中提出了这些结果。医疗保健专业人员、患者和家庭在重要性方面的看法存在差异，这突显了使用措施促进沟通的必要性。
此处确定的优先 PRO 将是促进更有针对性的患者评估的关键。必须测试在癌症护理实践中实际使用措施来监测 PRO 的可行性和可用性。
