Twohig Helen, Jones Georgina, Mackie Sarah, Mallen Christian, Mitchell Caroline
Academic Unit of Primary Medical Care, University of Sheffield, Samuel Fox House, Northern General Hospital, Herries Road, Sheffield, S5 7AU UK.
Faculty of Health and Social Sciences, Leeds Beckett University, Leeds, UK.
Pilot Feasibility Stud. 2017 Jul 6;4:7. doi: 10.1186/s40814-017-0150-y. eCollection 2018.
The development of a patient-reported outcome measure (PROM) for polymyalgia rheumatica (PMR), a condition that causes pain, stiffness and disability, is necessary as there is no current validated disease-specific measure. Initial literature synthesis and qualitative research established a conceptual framework for the condition along with a list of symptoms and effects of PMR that patients felt were important to them. These findings were used to derive the candidate items for a patient-completed questionnaire. We aim to establish the face validity of this initial "long form" of a PROM.
People with a current or previous diagnosis of PMR were recruited both from the community and from rheumatology clinics. They were asked to complete the PMR questionnaire along with the QQ-10 questionnaire, which is a measure used to assess the face validity, feasibility and utility of patient healthcare questionnaires.
A total of 28 participants with an age range of 59-85 years and a length of time since diagnosis from 4 months to 18 years completed the QQ-10. The overall mean "value" score was 79% (SD 12), and the mean "burden" score was 21% (SD 18). The free-text comments were analysed thematically and were found to focus on layout, content, where in the clinical pathway the questionnaire would be most beneficial, specific items missing and other areas for consideration.
The high mean value score and low burden score indicate that the questionnaire has good face validity and is acceptable to patients. The questionnaire now needs to undergo further psychometric evaluation and refinement to develop the final tool for use in clinical practice and research.
风湿性多肌痛（PMR）是一种导致疼痛、僵硬和残疾的疾病，由于目前尚无经过验证的针对该疾病的特定测量方法，因此开发一种患者报告结局测量工具（PROM）很有必要。初步的文献综合分析和定性研究为该疾病建立了一个概念框架，以及一份患者认为对他们很重要的PMR症状和影响清单。这些发现被用于推导患者填写问卷的候选项目。我们旨在确定这种PROM初始“长格式”的表面效度。
从社区和风湿病诊所招募目前或既往诊断为PMR的患者。要求他们完成PMR问卷以及QQ-10问卷，QQ-10问卷是一种用于评估患者医疗问卷的表面效度、可行性和实用性的测量工具。
共有28名年龄在59 - 85岁之间、诊断后时间为4个月至18年的参与者完成了QQ-10问卷。总体平均“价值”得分为79%（标准差12），平均“负担”得分为21%（标准差18）。对自由文本评论进行了主题分析，发现其重点集中在问卷的布局、内容、在临床路径中问卷最有益的位置、缺失的特定项目以及其他需要考虑的方面。
较高的平均价值得分和较低的负担得分表明该问卷具有良好的表面效度且患者可接受。该问卷现在需要进一步进行心理测量学评估和完善，以开发出最终用于临床实践和研究的工具。
