Otter S J, Lucas K, Springett K, Moore A, Davies K, Young A, Walker-Bone K
School of Health Professions, University of Brighton, Brighton, UK.
Musculoskeletal Care. 2012 Jun;10(2):65-75. doi: 10.1002/msc.1001. Epub 2012 Feb 15.
The importance of patient-reported outcome measures in healthcare is increasingly recognized but these need to be patient generated. Given that foot symptoms are very common in rheumatoid arthritis (RA), we chose a patient-centred model with which to investigate the patients' perspective on how their foot symptoms affected them as individuals and impacted on their self-perceived quality of life, rather than using the traditional approaches of clinical examination (e.g. prevalence of deformities) or radiological assessments.
A 33-item self-administered postal questionnaire was sent to all people with RA attending outpatient clinics in three hospitals over the course of one month (n=390). The questionnaire used both quantitative and qualitative approaches to enquire about the nature and extent of foot complaints and how respondents believed this affected their quality of life.
In total, 190 usable replies were received (49%). Nearly all respondents (n=177; 93.2%) reported that their quality of life was adversely affected by their foot complaint(s), with over half describing their quality of life as being badly or very badly affected. When asked to rate how severely foot complaints affected their quality of life using a 10 cm visual analogue scale, the mean score was 5.36 (range 0-10 ± SD 3), indicating that foot complaints have a moderate-to-severe effect on quality of life. Those aspects of daily living most significantly affected were: the ability to walk and the ability to wear a variety of shoes.
This study demonstrated that people with RA focus on different aspects of the impact of their disease to doctors. Rather than foot deformity or ulceration, disease activity score or health assessment questionnaire score, patients were easily able to pinpoint the key negativities of living with RA in their feet and indicated choice of footwear and ability to walk as crucial. This study and similar ones are key to identifying appropriate patient-reported outcome measures.
患者报告结局指标在医疗保健中的重要性日益得到认可，但这些指标需要由患者生成。鉴于足部症状在类风湿关节炎（RA）中非常常见，我们选择了一种以患者为中心的模式，来调查患者对于其足部症状如何影响个体以及如何影响自我感知的生活质量的看法，而不是采用临床检查（如畸形患病率）或影像学评估的传统方法。
在一个月的时间里，向三家医院门诊就诊的所有类风湿关节炎患者发送了一份33项的自填式邮寄问卷（n = 390）。该问卷采用定量和定性方法，询问足部问题的性质和程度，以及受访者认为这如何影响他们的生活质量。
共收到190份有效回复（49%）。几乎所有受访者（n = 177；93.2%）报告称，他们的生活质量受到足部问题的不利影响，超过一半的人将他们的生活质量描述为受到严重或非常严重的影响。当要求使用10厘米视觉模拟量表对足部问题对生活质量的影响程度进行评分时，平均得分为5.36（范围0 - 10 ±标准差3），表明足部问题对生活质量有中度至重度影响。日常生活中受影响最显著的方面是：行走能力和穿各种鞋子的能力。
本研究表明，类风湿关节炎患者关注疾病影响的方面与医生不同。患者能够轻松指出类风湿关节炎足部问题的关键负面影响，而不是足部畸形或溃疡、疾病活动评分或健康评估问卷评分，并指出鞋类选择和行走能力至关重要。本研究及类似研究对于确定合适的患者报告结局指标至关重要。
