角膜疾病患者报告结局评估工具的研究进展

doi:10.16460/j.issn1008-9969.2023.12.040

摘要/Abstract

摘要： 目的对国内外角膜疾病患者报告结局评估工具进行综述,以期为角膜疾病患者报告结局评估工具构建和应用提供依据。方法检索国内外相关文献,对国内外角膜疾病评估工具进行文献检索、整理和分析。结果汇总了角膜疾病特异性量表、视力相关专用量表和普适量表3个类别共7个量表,对各类测评工具的主要内容、应用现状、优点及局限性进行分析和总结。结论开发系统全面的角膜疾病相关量表,构建基于计算机自适应技术的信息化患者报告结局测评的系统,建立患者报告结局测评工具的规范化临床实践模式,以及推进患者报告结局应用的常态化,是未来研究的重要方向。

关键词: 角膜疾病, 患者报告结局, 测评工具, 护理

中图分类号:

R473.77

雷丹, 卞薇. 角膜疾病患者报告结局评估工具的研究进展[J]. 护理学报, 2023, 30(12): 40-44.

参考文献

[1] 医政医管局.国家卫生健康委关于印发“十四五”全国眼健康规划(2021-2025年)的通知[EB/OL]. [2023-05-23]. http://www.nhc.gov.cn/yzygj/s7653/202201/d607d24b6b1c4bd9b827eedf41eff820.shtml.
[2] Focus area: Patient-Reported Outcomes and other clinical outcome assessments | FDA[EB/OL]. [2023-05-23].https://www.fda.gov/science-research/focus-areas-regulatory-science-report/focus-area-patient-reported-outcomes-and-other-clinical-outcome-assessments.
[3] 成磊, 袁长蓉. 科学视角下患者报告结局实施的研究进展[J]. 护理学杂志, 2020,35(24):98-101.DOI:10.3870/j.issn.1001-4152.2020.24.098
[4] Khadka J, Schoneveld PG, Pesudovs K.Development of a Keratoconus-Specific Questionnaire using rasch analysis[J]. Optom Vis Sci,2017,94(3):395-403.DOI:10.1097/OPX.0000000000001035.
[5] Kandel H, Pesudovs K, Ferdi A, et al.Psychometric properties of the Keratoconus Outcomes Research Questionnaire: A save sight keratoconus registry study[J]. Cornea, 2020,39(3):303-310.DOI:10.1097/ICO.0000000000002169.
[6] Bak-Nielsen S, Groenborg TK, Ivarsen A, et al.The Keratoconus Outcome Research Questionnaire: a cross-cultural validation study of the Danish version[J]. Cornea, 2020,39(8):998-1005.DOI:10.1097/ICO.0000000000002354.
[7] Pinto R, Gomes FC, Arieta C, et al.Translation and validation of the Portuguese version of the Keratoconus Outcomes Research Questionnaire (KORQ)[J]. Arq Bras Oftalmol, 2021,84(5):430-435.DOI:10.5935/0004-2749.20210067.
[8] Ferrini E, Aleo D, Posarelli C, et al.The Italian version of the Keratoconus Outcomes Research Questionnaire (KORQ): translation and validation of psychometric properties[J]. Eur J Ophthalmol, 2021, 31(6):3511-3517.DOI:10.1177/11206721211028044.
[9] Al B M, AlRyalat S A, Salameh R, et al. Quality of life and tomography indices in patients with keratoconus[J]. J Int Med Res, 2023,51(4):1-8.DOI:10.1177/03000605231170549.
[10] Pinto R,Abe RY,Gomes FC,et al.Quality of life in keratoconus: evaluation with Keratoconus Outcomes Research Questionnaire (KORQ)[J]. Sci Rep, 2021,11(1):12970-12978.DOI:10.1038/s41598-021-92346-1.
[11] Balparda K, Herrera-Chalarca T, Silva-Quintero LA, et al.Development and validation of the "Keratoconus End-Points Assessment Questionnaire" (KEPAQ), a disease-specific instrument for evaluating subjective emotional distress and visual function through rasch analysis[J]. Clin Ophthalmol,2020,14:1287-1296.DOI:10.2147/OPTH.S254370.
[12] Yu JO, Gundel RE.Use of Acular LS in the pain management of keratoconus: a pilot study[J].Optom Vis Sci, 2010,87(2):125-130.DOI:10.1097/OPX.0b013e3181c75170.
[13] Mangione CM, Berry S, Spritzer K, et al.Identifying the content area for the 51-item National Eye Institute Visual Function Questionnaire: results from focus groups with visually impaired persons[J]. Arch Ophthalmol, 1998,116(2):227-233.DOI:10.1001/archopht.116.2.227.
[14] Mangione CM, Lee PP, Gutierrez PR, et al.Development of the 25-item National Eye Institute Visual Function Questionnaire[J]. Arch Ophthalmol, 2001,119(7):1050-1058.DOI:10.1001/archopht.119.7.1050.
[15] Wang CW, Chan CL, Jin HY.Psychometric properties of the Chinese version of the 25-item National Eye Institute Visual Function Questionnaire[J]. Optom Vis Sci, 2008,85(11):1091-1099.DOI:10.1097/OPX.0b013e31818b9f23.
[16] Baudin F, Chemaly A, Arnould L, et al.Quality-of-life improvement after scleral lens fitting in patients with keratoconus[J]. Eye Contact Lens, 2021,47(9):520-525.DOI:10.1097/ICL.0000000000000821.
[17] Keeffe JE, McCarty CA, Hassell JB, et al. Description and measurement of handicap caused by vision impairment[J]. Aust N Z J Ophthalmol, 1999, 27(3-4):184-186.DOI:10.1046/j.1440-1606.1999.00179.x.
[18] Fenwick EK, Ong PG, Sabanayagam C, et al.Assessment of the psychometric properties of the Chinese Impact of Vision Impairment Questionnaire in a population-based study: findings from the Singapore Chinese Eye Study[J]. Qual Life Res, 2016,25(4):871-880.DOI:10.1007/s11136-015-1141-1.
[19] Tan J, Nguyen V, Fenwick E, et al.Vision-related quality of life in keratoconus: a save sight keratoconus registry study[J]. Cornea, 2019,38(5):600-604.DOI:10.1097/ICO.0000000000001899.
[20] McAlinden C, Pesudovs K, Moore J E. The development of an instrument to measure quality of vision: the Quality of Vision (QoV) questionnaire[J]. Invest Ophthalmol Vis Sci, 2010,51(11):5537-5545.DOI:10.1167/iovs.10-5341.
[21] Macedo-de-Araujo RJ, McAlinden C, van der Worp E, et al. Improvement of vision and ocular surface symptoms with a scleral lens after microbial keratitis[J].Eye Contact Lens, 2021,47(8):480-483.DOI:10.1097/ICL.0000000000000794.
[22] Mohebbi M, Hashemi H, Mahmoudi A, et al.Descemet's Stripping-automated Endothelial Keratoplasty for symptomatic thioridazine deposits in the cornea[J]. Taiwan J Ophthalmol, 2017,7(1):53-55.DOI:10.4103/tjo.tjo_4_17.
[23] Lundstrom M, Roos P, Jensen S, et al.Catquest questionnaire for use in cataract surgery care: description, validity, and reliability[J].J Cataract Refract Surg,1997,23(8):1226-1236.DOI:10.1016/s0886-3350(97)80321-5.
[24] Lundstrom M, Pesudovs K.Catquest-9SF patient outcomes questionnaire: nine-item short-form Rasch-scaled revision of the Catquest questionnaire[J]. J Cataract Refract Surg, 2009,35(3):504-513.DOI:10.1016/j.jcrs.2008.11.038.
[25] 黄锦海, 陈海丝, 高蓉蓉, 等. 国人白内障视功能相关生存质量简表的研制及其测量特性评价[J]. 中华眼视光学与视觉科学杂志,2015(7):402-406.DOI:10.3760/cma.j.issn.1674-845X.2015.07.005.
[26] Claesson M, Armitage WJ, Bystrom B, et al.Validation of Catquest-9SF-A visual disability instrument to evaluate patient function after corneal transplantation[J]. Cornea, 2017, 36(9):1083-1088.DOI:10.1097/ICO.0000000000001255.
[27] Balal S, Udoh A, Pappas Y, et al.The feasibility of Finger prick Autologous Blood (FAB) as a novel treatment for severe Dry Eye Disease (DED): protocol for a randomised controlled trial[J]. BMJ Open, 2018,8(10):e26770-e26776.DOI:10.1136/bmjopen-2018-026770.
[28] Zhou Y, Murrough J, Yu Y, et al.Association between depression and severity of dry eye symptoms, signs, and inflammatory markers in the DREAM study[J]. JAMA Ophthalmol, 2022,140(4):392-399.DOI:10.1001/jamaophthalmol.2022.0140.
[29] Vakros G, Scollo P, Hodson J, et al.Anxiety and depression in inflammatory eye disease: exploring the potential impact of topical treatment frequency as a putative psychometric item[J]. BMJ Open Ophthalmol, 2021,6(1):e649-e657.DOI:10.1136/bmjophth-2020-000649.
[30] Hoffman JJ, Yadav R, Das SS, et al.Topical chlorhexidine 0.2% versus topical natamycin 5% for fungal keratitis in Nepal: rationale and design of a randomised controlled non-inferiority trial[J]. BMJ Open, 2020,10(9):e38066-e38078.DOI:10.1136/bmjopen-2020-038066.
[31] Moreira LB, Alchieri JC, Belfort RJ, et al.Psychological and social aspects of patients with keratoconus[J]. Arq Bras Oftalmol, 2007, 70(2):317-322.DOI:10.1590/s0004-27492007000200023.
[32] 国家药监局药审中心关于发布《患者报告结局在药物临床研发中应用的指导原则(试行)》的通告(2021年第62号)[EB/OL]. [2022-09-11]. https://www.cde.org.cn/main/news/viewInfoCommon/c2f79c22e8678241b030c71523eb300c.
[33] 黄跃师, 张雯, 杨瑒, 等. 基于项目反应理论的计算机自适应测试系统在医护领域的应用思考[J].护士进修杂志, 2020,35(1):34-38.DOI:10.16821/j.cnki.hsjx.2020.01.008.
[34] 倪飞霞, 蔡婷婷, 顾艳荭, 等. 基于患者报告结局的计算机自适应测试系统在身体功能领域中的应用进展[J]. 护士进修杂志, 2022,37(20):1857-1860.DOI:10.16821/j.cnki.hsjx.2022.20.009.
[35] Khadka J, McAlinden C, Craig JE, et al. Identifying content for the glaucoma-specific item bank to measure quality-of-life parameters[J]. J Glaucoma, 2015,24(1):12-19.DOI:10.1097/IJG.0b013e318287ac11.
[36] Fenwick EK, Khadka J,Pesudovs K,et al.Diabetic retinopathy and macular edema quality-of-life item banks: development and initial evaluation using computerized adaptive testing[J]. Invest Ophthalmol Vis Sci, 2017,58(14):6379-6387.DOI:10.1167/iovs.16-20950.
[37] Prem SM, Khadka J, De Roach J, et al.Developing an item bank to measure the coping strategies of people with hereditary retinal diseases[J]. Graefes Arch Clin Exp Ophthalmol, 2018, 256(7):1291-1298.DOI:10.1007/s00417-018-3998-5.
[38] Prem SM, Khadka J, De Roach J, et al.Development and psychometric assessment of novel item banks for hereditary retinal diseases[J]. Optom Vis Sci, 2019,96(1):27-34.DOI:10.1097/OPX.0000000000001317.
[39] Petersen MA, Aaronson NK, Arraras JI, et al.The EORTC CAT Core-The computer adaptive version of the EORTC QLQ-C30 questionnaire[J]. Eur J Cancer, 2018,100:8-16.DOI:10.1016/j.ejca.2018.04.016.
[40] 侯政昆, 刘凤斌, 陈新林, 等. 基于条目反应理论、计算机自适应测试及数据模拟的胃痞患者报告结局量表简短版的研制与评价[J]. 中国中西医结合杂志, 2015,35(7):806-815.DOI:10.7661/CJIM.2015.07.0806
[41] 卞薇, 刘洋, 万君丽, 等. 成人斜视患者报告结局测评系统的构建及应用[J]. 护理学杂志, 2019,34(2):1-4.DOI:10.3870/j.issn.1001-4152.2019.02.001
[42] Li M, Macedo A, Crawford S, et al.Easier said than done: Keys to successful implementation of the Distress Assessment and Response Tool (DART) program[J].J Oncol Pract, 2016,12(5):e513-e526.DOI:10.1200/JOP.2015.010066.
[43] Dai W, Feng W, Zhang Y, et al.Patient-reported outcome-sased symptom management versus usual care after lung cancer surgery: a multicenter randomized controlled trial[J]. J Clin Oncol, 2022, 40(9):988-996.DOI:10.1200/JCO.21.01344.
[44] 陈文嘉, 徐东, 李慧, 等. 实施科学理论的分类与介绍[J]. 中国循证医学杂志, 2020, 20(8):986-992.DOI:10.3870/j.issn.1001-4152.2019.02.001.

Metrics

Viewed

Full text

Abstract

Cited

Shared