Joshi H B, Newns N, Stainthorpe A, MacDonagh R P, Keeley F X, Timoney A G
Bristol Urological Institute, Southmead Hospital, Bristol, UK.
BJU Int. 2001 Sep;88(4):329-34. doi: 10.1046/j.1464-410x.2001.02356.x.
To report a scientific approach incorporating patient preferences towards the development of a patient-information booklet about ureteric stents.
Phase 1 of the study included 35 adult patients with ureteric stents who were surveyed using semi-structured interviews (four patients) and a questionnaire (31 patients) to assess various issues relating to information given to patients about ureteric stents. In addition, published papers were assessed and clinicians' opinions sought. The results formed the basis for a comprehensive patient-information booklet about ureteric stents that incorporated patients' views and preferences. In phase 2, the booklet was tested and formally validated by inviting 30 patients, a panel of 20 urologists and general practitioners, and five stent manufacturers to assess the booklet for adequacy, coverage and readability of the content.
Of the 35 patients, 30 (19 men and 11 women, mean age 49 years, range 20-78) participated in the initial survey; 80% of patients reported dissatisfaction about the information they received. Patients wanted more information about the use, adverse events and effects of stents on daily life; 85% preferred all relevant information about the stents to be in a written format with illustrative drawings. An eight-page booklet was thus developed. The validation study revealed that the booklet matched patients' experiences (approval score of 9/10, range 8-10) and was reported as satisfactory by clinicians and manufacturers.
A validated information booklet on ureteric stents was developed, incorporating patients' expectations and views. This booklet is expected to be an effective tool for patient communication that would help patients cope better with indwelling stents and be useful in counselling patients. A similar approach could be adopted for the development of other patient-information packs.
报告一种科学方法，该方法将患者偏好纳入输尿管支架患者信息手册的编写过程。
研究的第一阶段纳入了35名输尿管支架成年患者，通过半结构化访谈（4名患者）和问卷调查（31名患者）评估与向患者提供的输尿管支架相关信息的各种问题。此外，评估已发表的论文并征求临床医生的意见。这些结果构成了一本关于输尿管支架的综合患者信息手册的基础，该手册纳入了患者的观点和偏好。在第二阶段，通过邀请30名患者、由20名泌尿科医生和全科医生组成的小组以及5家支架制造商评估手册内容的充分性、覆盖范围和可读性，对手册进行测试和正式验证。
35名患者中，30名（19名男性和11名女性，平均年龄49岁，范围20 - 78岁）参与了初始调查；80%的患者表示对所获得的信息不满意。患者希望获得更多关于支架的使用、不良事件以及对日常生活影响的信息；85%的患者更喜欢所有与支架相关的信息采用带有插图的书面形式。因此编写了一本八页的手册。验证研究表明，该手册符合患者的经历（批准分数为9/10，范围8 - 10），临床医生和制造商均报告该手册令人满意。
编写了一本经过验证的关于输尿管支架的信息手册，纳入了患者的期望和观点。该手册有望成为患者沟通的有效工具，帮助患者更好地应对留置支架，并在为患者提供咨询时发挥作用。开发其他患者信息包时可采用类似方法。
