Trends in the long-term impact of childhood visual impairment on health and social outcomes in the UK: a cross-cohort study across three decades of disability-related legislation and policy implementation.

BACKGROUND: Childhood vision impairment (VI) can adversely impact health and social outcomes and limit life chances. We investigated whether its adverse impacts into adult life changed during a period in which legislation, policy and services to address inequalities relating to disability were implemented. METHODS: Cross-cohort study comprising 14 247 participants from the 1946, 1958 and 1970 British birth cohorts (BC). Participants dichotomized as VI at age 15/16 (distance visual acuity was 6/12 or worse in the better-seeing eye) or normally sighted. Associations of childhood VI with health, well-being, socioeconomic and social participation outcomes in mid-adult life were investigated using regression models adjusted for participants' early life socioeconomic markers and sex. Change in adjusted odds ratios of >10% in the same direction in successive cohorts, or a > 20% difference between 1970BC and one older cohort were considered meaningful. RESULTS: Trends over time in impacts of childhood onset VI into mid-adult life were complex. This included worsening of odds of poorer physical health (odds ratio 1.47; 95% confidence interval 1.02-2.14), living in unsatisfactory (1.54; 1.03-2.29) or overcrowded (2.34; 1.26-4.06) households, being unemployed (2.19; 1.19-3.97) and not gaining additional educational qualifications during mid-adult life (1.61; 1.08-2.47). By contrast the odds of not participating in some social activities (e.g. seeing friends) improved over time. Associations with other outcomes were unchanged. CONCLUSIONS: Many adverse impacts of childhood VI do not appear ameliorated over time by legislation, policies and provision that would have been expected to reduce inequalities. Moreover, some were increased. Childhood VI continues to cast a life-long shadow.

Data saves lives: optimising routinely collected clinical data for rare disease research.

Necessity driven organisational change in the post-pandemic landscape has seen health care providers adopting innovations to manage and process health data. These include the use of 'real-world' datasets of routinely collected clinical information, enabling data-driven delivery. Rare disease risks being 'left-behind' unless our clinical and research communities engage with the challenges and opportunities afforded by the burgeoning field of health data informatics. We address the challenges to the meaningful use and reuse of rare disease data, and, through a series of recommendations around workforce education, harmonisation of taxonomy, and ensuring an inclusive health data environment, we highlight the role that those who manage rare disease must play in addressing them.

Educational attainment and trajectories at key stages of schooling for children with amblyopia compared to those without eye conditions: Findings from the Millennium Cohort Study.

BACKGROUND: Amblyopia is a neurodevelopmental condition resulting in reduced vision for which whole population child vision screening is undertaken. Cross-sectional studies have established an association between amblyopia and lower academic self-concept, slower reading speed. No difference has been found in educational performance in adolescence whilst there are mixed associations with educational attainment in adults. Educational trajectories and intentions have not been studied previously. We analyse if those treated for amblyopia have different educational performance and trajectories for core subjects during statutory schooling, or subsequent higher education (university) intentions than their peers without eye conditions. METHODS AND FINDINGS: Data from the Millennium Cohort Study of children born in the United Kingdom in 2000-01 and followed-up to age 17 years (n = 9989). Using a validated approach drawing on parental self-report on eye conditions and treatment coded by clinical reviewers, participants were grouped into mutually exclusive categories: no eye conditions, strabismus alone, refractive amblyopia, strabismic/mixed (refractive plus strabismic) amblyopia. The outcomes were levels and trajectories of passing English, Maths, Science at ages 7-16 years, passing national exams at age 16, and intentions at ages 14-17 to pursue higher (university) education. Adjusted analyses showed that amblyopia status was not associated with performance in English, Maths, and Science at any key stage, attainment in national exams, or intending to go to university. Similarly, the age-related trajectories of performance in core subjects and higher education intentions did not differ between the groups. There were no significant differences in main reason for having or not having university intentions. CONCLUSIONS: We found no associations between a history of amblyopia and either adverse performance or age-related attainment trajectories in core subjects during key stages of statutory schooling as well as the absence of an association with intentions for higher education. These results should be reassuring to affected children and young people, and their families, teachers and physicians.

Impaired vision and physical activity in childhood and adolescence: findings from the Millennium Cohort Study.

BACKGROUND/AIMS: Investigate if impaired vision is associated with reduced levels and differences in types of physical activity (PA) to identify barriers or enablers to achieving healthy PA levels. METHODS: Data from the Millennium Cohort Study of children born in the UK in 2000-2001 and followed-up to age 14 years (n=11 571). Using parental report on eye conditions coded by clinicians, children were categorised as having no, unilateral or bilateral impaired vision. Outcomes included objective accelerometer-derived time spent in moderate-to-vigorous physical activity (MVPA), and 16 PA types reported by parents, teachers and/or participants, covering physical education (PE), organised sports, self-organised sports and hobbies. RESULTS: Overall, 50% of 7-year-olds and subsequently 41% as 14-year-olds achieved the internationally recommended level of ≥60 MVPA min/day, irrespective of vision status, and mainly attributable to PE and organised sports. Bilateral impaired vision (vs none) was associated with parent-reported difficulties with PE (adjusted OR, 4.67; 95% CI, 2.31 to 9.41), self-rated poor ability in PE (3.21; 1.44 to 7.15) and not enjoy indoor PA (0.48; 0.26 to 0.88). Unilateral impaired vision was associated with both parent-rated difficulties (1.80; 1.26 to 2.59) and teachers' perception of low ability in PE (2.27; 1.57 to 3.28), and reduced odds of high participation in organised sports (0.77; 0.59 to 0.99). Age-related trajectories showed suboptimal PA in childhood tracked into adolescence, with no difference by vision status. CONCLUSION: Population-wide programmes to increase PA levels in children should pay special attention to those with impaired vision and include early interventions to encourage participation and confidence in PE and organised sports, starting in primary school and maintained afterwards.