Health and social outcomes of children with visual impairment and blindness in the U.K

英国视力障碍和失明儿童的健康和社会结果

• 批准号: 2077992
• 金额: --
• 依托单位: University College London
• 依托单位国家: 英国
• 项目类别: Studentship
• 财政年份: 2018
• 资助国家: 英国
• 起止时间: 2018 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=studentship-2077992
• 关键词: Health; social; outcomes; children; visual

IntroductionSevere visual impairment and blindness (SVIBL) in childhood is rare, but confers significant impact on many aspects of development, education and activities of everyday life. The burden in terms of 'sight years lost' is disproportionate in children compared to adult-onset bilateral vision loss as it occurs much earlier in the life-course.National, representative epidemiological data on childhood SVIBL are scarce. The British Childhood Visual Impairment & Blindness Study (BCVIS1), a national surveillance study of SVIBL conducted in 2000, is currently the only study that has published national incidence data on paediatric SVIBL in the U.K. The BCVIS2 - investigating full spectrum visual impairment (i.e. including the category of visual impairment (VI) as well as SVI/BL as studied in BCVIS1) has recently been completed and papers are in progress. I was the Research Assistant on the BCVIS2 study prior to entering the DTP. AimTo explore the health, educational and social outcomes in early adulthood of children diagnosed with full spectrum visual impairment and blindness during childhood and to quantify for the first time the economic burden of childhood SVIBL in the UK. This project is important as it provides baseline survival and cost data that would otherwise be unavailable for children with VI and SVIBL, and is useful to populate the future models for cost-effectiveness analyses of novel treatments or technologies that are required for public funding.MethodsEthics approval will be sought from the NHS Confidential Advisory Group and Health Research Authority research committee to:a) carry out unconsented deterministic linkage of children with SVI/BL identified in the BCVIS1 study (using the partial identifiers: date of birth, postcode and ethnicity for children without a recorded NHS number) to national administrative datasets including the national pupil database (NPD), hospital episodes statistics (HES) and ONS mortality dataset. In addition to the longitudinal analysis of health outcomes, healthcare utilisation data from HES will be used to calculate healthcare costs and determine the cost-of-illness of childhood SVIBL from the healthcare perspective.b) make direct contact with families of members of BCVIS2 cohort (now preschool age) to invite parents to participate in assessing health and social outcomes using standardised questionnaires and in-depth interviews and to obtain further clinical follow up data via their ophthalmologists (to add to one year follow up data already collected via managing ophthalmologists). This is a discipline bridging PhD project which is reflected in my supervisory panel. I will be enlisting experts in the field of child health and administrative data to my panel, but have not listed names as yet as meetings are taking place after they return from Summer annual leave.

儿童严重视力损害和失明(SVIBL)是一种少见的疾病，严重影响儿童的发育、教育和日常生活活动的方方面面。与成人起病的双眼视力丧失相比，儿童失去视力的负担是不成比例的，因为它发生在生命过程的更早阶段。关于儿童SVIBL的全国性、代表性的流行病学数据很少。英国儿童视力损害与失明研究(BCVIS1)是2000年进行的一项关于SVIBL的全国性监测研究，目前是唯一一项公布了英国儿童SVIBL全国发病率数据的研究。BCVIS2-调查全谱视力损害(即包括BCVIS1中研究的视力损害(VI)类别和SVI/BL)最近已经完成，论文正在进行中。在进入DTP之前，我是BCVIS2研究的研究助理。目的探讨儿童时期被诊断为全谱性视力障碍和失明的儿童在成年早期的健康、教育和社会后果，并首次量化英国儿童SVIBL的经济负担。这个项目很重要，因为它提供了患有VI和SVIBL的儿童原本无法获得的基线生存和成本数据，并有助于为公共资金所需的新治疗或技术的成本效益分析填充未来的模型。方法伦理将寻求NHS保密咨询小组和卫生研究机构研究委员会的伦理批准，以：a)对BCVIS1研究中确定的SVI/BL儿童进行未经同意的确定性联系(使用部分标识符：出生日期、邮政编码和种族，没有NHS编号的儿童)到国家行政数据集，包括国家学生数据库(NPD)、医院事件统计数据(HES)和ONS死亡率数据集。除了对健康结果的纵向分析外，HES的医疗利用数据将被用于计算医疗成本和从医疗角度确定儿童SVIBL的疾病成本。b)与BCVIS2队列成员(现为学龄前儿童)的家庭直接联系，邀请父母参与使用标准化问卷和深度访谈评估健康和社会结果，并通过他们的眼科医生获得进一步的临床随访数据(将通过管理眼科医生收集的一年随访数据增加到一年)。这是一个跨学科的博士项目，这在我的指导小组中得到了反映。我将征集儿童健康和行政数据领域的专家加入我的小组，但目前还没有列出他们的名字，因为他们从暑假回来后正在举行会议。