遗传性癌患者和公众参与小组:一个协作,共识决策过程,以开发一种患者使用的沟通工具
Ellen Colvin1, Stephanie Ng2, John Hepworth3
1Manchester Centre for Genomic Medicine, St. Mary's Hospital, Manchester University NHS Foundation Trust, Manchester, UK.
Journal of clinical and translational science
|May 30, 2023
概括
在临床研究中,患者和公众参与 (PPI) 确保满足患者的需求. 一个遗传性癌 (HRC) PPI组共同开发了一份信息表,以帮助患者向家人传达诊断.
科学领域:
- 在瘤学瘤学.
- 翻译研究是翻译研究.
- 患者参与 患者参与
背景情况:
- 患者和公众参与 (PPI) 对于患者主导的临床研究和满足患者需求至关重要.
- 积极的合作伙伴关系提高了对患者观点的理解,并为未来的研究方向提供了信息.
- 遗传性癌 (HRC) 研究可以从患者和公众的直接投入中受益.
研究的目的:
- 建立和参与一个遗传性癌 (HRC) 患者和公共参与 (PPI) 组.
- 与患者和医疗保健专业人员合作,以确定HRC研究沟通中的未满足需求.
- 共同开发一个以患者为中心的沟通工具,用于HRC诊断.
主要方法:
- 组建了一个HRC PPI小组,包括9名患有诸如希佩尔-林道和遗传性肌肉瘤和细胞癌等疾病的患者参与者,以及8名研究人员/医疗保健专业人员.
- 包括来自VHL英国和爱尔兰慈善机构的2名患者受托人.
- 促进了讨论,以指导新型患者信息表的开发.
主要成果:
- 该PPI小组成功地共同开发了HRC患者的新型患者信息表.
- 信息表旨在帮助患者向家人传达诊断及其影响.
- 确定并解决了有关HRC诊断的患者与家庭沟通的关键差距.
结论:
- 在临床研究中嵌入PPI组对于以患者为中心的结果至关重要.
- 开发的信息表是HRC患者及其家属的宝贵沟通工具.
- 建立和利用这一PPI组的方法可能可以转移到其他遗传性癌症研究和医疗保健环境中.
相关概念视频
01:28Chronic Kidney Disease III: Interprofessional Care
51
Chronic kidney disease (CKD) requires collaborative and comprehensive management. CKD progresses through stages and can lead to end-stage kidney disease (ESKD) if untreated. Interprofessional collaboration and patient education are crucial, enabling patients to manage their health and improve their quality of life.Diagnostic approach for chronic kidney diseaseThe diagnosis of CKD primarily focuses on the glomerular filtration rate (GFR), which assesses kidney function by measuring how well...
51
01:27Nursing Ethical Principles II
1.0K
Ethical principles are essential in guiding nurses to fulfill their responsibilities, focusing on the quality of nursing care and decision-making. These principles, including autonomy, beneficence, non-maleficence, justice, and fidelity, shape the ethical framework within healthcare settings.
Consider the following scenario, which illustrates how these principles are applied in the care of Mr. John, a fifty-year-old teacher diagnosed with metastatic liver cancer.
Initially, Mr. John's...
Consider the following scenario, which illustrates how these principles are applied in the care of Mr. John, a fifty-year-old teacher diagnosed with metastatic liver cancer.
Initially, Mr. John's...
1.0K
01:25Role of Communication in the Nursing Process II: Planning and Implementation
1.9K
Several factors are considered while creating a patient's care plan. Motivation is a factor in improving communication, and patients often require encouragement to try different approaches involving significant change. It is essential to involve the patient and family in decisions about the plan of care to determine whether the suggested methods are acceptable. Consider meeting critical comfort and safety needs before introducing new communication methods and techniques. Allow adequate time...
1.9K
02:50Combination Therapies and Personalized Medicine
5.0K
Combining two or more treatment methods increases the life span of cancer patients while reducing damage to vital organs or tissue from the overuse of a single treatment. Combination therapy also targets different cancer-inducing pathways, thus reducing the chances of developing resistance to treatment.
The combination of the drug acetazolamide and sulforaphane is a good example of combination therapy to treat cancer. The cells in the interior of a large tumor often die due to the hypoxic and...
The combination of the drug acetazolamide and sulforaphane is a good example of combination therapy to treat cancer. The cells in the interior of a large tumor often die due to the hypoxic and...
5.0K