Westwood N, Travis S P L
National Association of Colitis and Crohn's Disease, UK.
Aliment Pharmacol Ther. 2008 Mar;27 Suppl 1:1-8. doi: 10.1111/j.1365-2036.2008.03605.x.
The patient's perceptions of benefits and risks of treatment differ from those of physicians, yet this topic is rarely explored in ulcerative colitis or Crohn's disease.
To present a patient's perspective on care for their colitis, to consider how patients' views will influence preliminary proposals for standards of care, and to discuss the different priorities of patients and physicians.
Description of an individual patient's journey from diagnosis of ulcerative colitis to colectomy, compared with priorities proposed by a patient-based organization (National Association of Colitis and Crohn's disease).
Awareness of colitis in primary care, prompt referral, timely investigation and specialist care if admitted to hospital are shared goals of patients and physicians. Patients are generally prepared to accept higher risks from medical treatment to avoid their undesirable outcomes (especially colectomy) than physicians will on their behalf. There has been little systematic study of this disparity in ulcerative colitis. Under-reporting the symptom burden, tolerance of treatment side effects, substantial lifestyle changes and willingness to explore any treatment options are characteristic coping strategies. Physicians should be alert to coping strategies, with a willingness to seek second opinions.
Perceptions of risk and benefit differ between patients and physicians, and recognition of this difference is a starting point for difficult clinical decision-making.
患者对治疗益处和风险的认知与医生不同，但在溃疡性结肠炎或克罗恩病中，这一话题很少被探讨。
呈现患者对结肠炎护理的观点，思考患者的观点将如何影响护理标准的初步提议，并讨论患者和医生不同的优先事项。
描述一名溃疡性结肠炎患者从诊断到结肠切除术的历程，并与一个以患者为基础的组织（全国结肠炎和克罗恩病协会）提出的优先事项进行比较。
初级保健中对结肠炎的认识、及时转诊、及时检查以及住院时的专科护理是患者和医生的共同目标。与医生相比，患者通常愿意接受更高的医疗风险以避免不良后果（尤其是结肠切除术）。在溃疡性结肠炎中，对这种差异几乎没有进行系统研究。对症状负担报告不足、对治疗副作用的耐受、生活方式的大幅改变以及愿意探索任何治疗方案是典型的应对策略。医生应警惕这些应对策略，并愿意寻求第二种意见。
患者和医生对风险和益处的认知不同，认识到这种差异是艰难临床决策的起点。
