Stovall E L
Oncology (Williston Park). 1996 Nov;10(11 Suppl):255-60.
Although practice guidelines are important road maps for the management of patients with specific cancers, numerous ethical questions surrounding their use need to be resolved. Perhaps the most basic of these questions is, what constitutes quality cancer care and who will define it? A survey conducted by the National Coalition of Cancer Survivorship (NCCS) has identified three elements essential to quality cancer care: (1) access to services; (2) appropriate, timely referrals; and (3) access to clinical trials. One of the goals of practice guidelines should be to help empower patients; ie, to educate patients about what questions to ask in order to be informed healthcare consumers. Also, quantitative and qualitative data on the patient experience, elicited by well-developed methodologies, should be used to inform the guideline development process. Finally, guideline developers need to keep in mind that the focus of clinical guidelines is not the disease itself, but rather, the patient with that disease.
尽管实践指南是管理特定癌症患者的重要路线图，但围绕其使用存在的众多伦理问题仍有待解决。这些问题中最基本的或许是，什么构成高质量的癌症护理以及由谁来定义它？美国癌症幸存者全国联盟（NCCS）开展的一项调查确定了高质量癌症护理必不可少的三个要素：（1）获得服务的机会；（2）适当、及时的转诊；（3）参与临床试验的机会。实践指南的目标之一应该是帮助增强患者的权能；也就是说，教育患者应该问哪些问题，以便成为明智的医疗消费者。此外，通过完善的方法收集的关于患者体验的定量和定性数据，应用于为指南制定过程提供信息。最后，指南制定者需要牢记，临床指南的重点不是疾病本身，而是患有该疾病的患者。
