Practice guidelines: patients' perspective

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.