Hewlett Sarah, Carr Maggie, Ryan Sarah, Kirwan John, Richards Pam, Carr Alison, Hughes Rod
Academic Rheumatology Unit, University of Bristol.
Musculoskeletal Care. 2005;3(3):131-42. doi: 10.1002/msc.3.
It has been shown previously that patients with rheumatoid arthritis (RA) can generate a wide range of outcomes that they consider important in treatment. It is not known if these outcomes are generally important in the wider RA patient community.
(1) To examine whether recent patient-generated outcomes are generalizable within a wider RA population; (2) to assess the relative importance of each outcome; and(3) to explore whether any important outcomes have been omitted.
A questionnaire, listing 23 outcomes previously generated by RA patients, was distributed through three rheumatology centres in the UK. Patients gave an importance score to each outcome (0-3), selected their top three most important outcomes, and then listed any outcomes of personal importance that were missing.
323 questionnaires were returned (65%). All outcomes were deemed important. Independence, pain, and mobility were most frequently selected by patients in their top three outcomes but were not chosen by 61-66% of patients. The next most commonly chosen outcomes related to feeling well and fatigue. Factor analysis revealed six reasonably distinct groupings: general well-being (11.9% explained variance), day-to-day functioning(10.6%), emotional and psychological well-being (10.6%), social role and confidence (10%), physical symptoms (9.5%) and medication issues (7.9%).
Outcomes generated by patients as important in RA, are generalizable and inclusive. The most important (independence, pain and mobility) are routinely treated and measured. The next most important (feeling well, fatigue) are infrequently addressed and deserve urgent consideration for measurement, treatment and research.
先前研究表明，类风湿关节炎（RA）患者会产生一系列他们认为在治疗中很重要的结果。目前尚不清楚这些结果在更广泛的RA患者群体中是否普遍重要。
（1）检验近期患者产生的结果是否能推广到更广泛的RA人群中；（2）评估每个结果的相对重要性；（3）探究是否遗漏了任何重要结果。
一份列出先前由RA患者产生的23个结果的问卷，通过英国的三个风湿病中心进行分发。患者对每个结果给出重要性评分（0 - 3分），选出他们认为最重要的三个结果，然后列出任何他们认为重要但问卷中缺失的结果。
共收回323份问卷（65%）。所有结果都被认为是重要的。独立性、疼痛和活动能力是患者在最重要的三个结果中最常选择的，但仍有61% - 66%的患者未选择。接下来最常被选择的结果与感觉良好和疲劳有关。因子分析揭示了六个相对不同的分组：总体幸福感（解释方差的11.9%）、日常功能（10.6%）、情绪和心理健康（10.6%）、社会角色和信心（10%）、身体症状（9.5%）以及药物问题（7.9%）。
患者认为在RA中重要的结果具有可推广性且涵盖范围广泛。最重要的（独立性、疼痛和活动能力）在常规治疗和测量中已有涉及。接下来最重要的（感觉良好、疲劳）很少得到关注，在测量、治疗和研究方面值得迫切考虑。
