一项建议,让生活在罕见和复杂疾病中的人参与制定临床实践指南
Anabel Granja-Dominguez1, Carmen Martin-Gomez2, Juan Darío Ortigoza-Escobar3
1Andalusian Health Technology Assessment Area (AETSA), Andalusian Public Foundation Progress and Health, Junta de Andalucia, Seville, Spain.
Patient education and counseling
|February 26, 2025
概括
本研究提出了一个框架,让生活在罕见疾病 (PLWRD) 的人参与临床实践指南 (CPG) 的制定. 参与PLWRD确保CPG具有包容性,并反映患者需求.
科学领域:
- 医疗保健服务研究 医疗服务研究
- 患者参与 患者参与
- 罕见疾病 罕见疾病
背景情况:
- 临床实践指南 (CPG) 对基于证据的医疗保健至关重要.
- 从历史上看,患者参与CPG开发是有限的,特别是在罕见和复杂的疾病中.
研究的目的:
- 制定一项建议,让生活在罕见和复杂疾病中的人们参与CPG的发展.
- 根据对定性文献的系统审查,以此提案为基础.
主要方法:
- 进行了对定性文献的系统审查.
- 搜索包括到2024年4月出版的英语和西班牙语文学.
- 识别了专注于患者参与CPG开发和研究的文献.
主要成果:
- 64个出版物强调了患者参与CPG开发的关键重要性.
- 报告了患者参与和信息收集的各种策略.
- 建议包括患者代表在指导方针制定和核心编写小组中,并在所有CPG阶段参与其中.
结论:
- 提出了一个框架,以积极地让生活在罕见疾病 (PLWRD) 的人参与CPG开发.
- 该框架旨在创建更具包容性和实用的建议.
- 目标是更好地将CPG与真实世界的患者需求和经验保持一致.
相关概念视频
Methods of Documentation VI: Case Management Model
559
The case management model is a multidisciplinary approach that involves healthcare professionals from diverse disciplines, such as physicians, nurses, therapists, social workers, and pharmacists, working collaboratively to address the various needs of patients. Each healthcare professional brings unique expertise and perspectives, contributing to a more comprehensive understanding of the patient's condition and tailoring treatment plans accordingly.
For example, a patient with a chronic...
For example, a patient with a chronic...
559
Ethical Dilemmas II
897
Resolving an ethical dilemma in healthcare involves a systematic approach that considers every aspect of the issue, respecting both the patient's needs and values and the healthcare professional's ethical obligations. Here are potential steps to resolve an ethical dilemma:
897
Guidelines for Writing Outcome
2.6K
When developing expected outcomes for a patient care plan, the nurse should adhere to the following recommendations:
Patient outcomes reflect the patient's response to the goal rather than what the nurse aims to achieve. Terminology should be observable and measurable to avoid the reader's interpretation. The desired outcome should be realistic and achievable in the designated care timeframe. Expected outcomes should align with adjunctive therapies. The outcome should enhance care...
Patient outcomes reflect the patient's response to the goal rather than what the nurse aims to achieve. Terminology should be observable and measurable to avoid the reader's interpretation. The desired outcome should be realistic and achievable in the designated care timeframe. Expected outcomes should align with adjunctive therapies. The outcome should enhance care...
2.6K
Ethical Issues
841
Nurses are essential in patient care, upholding the ethical principles of their profession and effectively navigating ethical dilemmas. Neglecting ethical issues can lead to inadequate patient care, compromised therapeutic relationships, and moral distress among healthcare workers.
Ethical Concerns in Healthcare:
Ethical Concerns in Healthcare:
841
Nursing Interventions II: Selecting and Classifying the Nursing Interventions
2.0K
Creating and executing a nursing diagnosis helps nurses plan care and guide patient, family, and community interventions. They are developed based on a patient's physical evaluation and support measuring the outcomes. It is not recommended to select random interventions throughout the planning process. Instead, consider the following six essential factors when choosing interventions:
2.0K
Self-Help Support Groups
25
Self-help support groups are voluntary, community-based organizations that provide a platform for individuals with shared concerns to exchange support, insights, and practical strategies for coping with life challenges. Typically led by group members or paraprofessionals, these groups form a cornerstone of mental health care, especially in reaching populations that are underserved by traditional healthcare systems.
Accessibility and Cost-Effectiveness
One of the primary strengths of self-help...
Accessibility and Cost-Effectiveness
One of the primary strengths of self-help...
25


