Disabling chronic conditions in childhood and social disadvantage: exploring the temporal pathway Dr Clare Blackburn, Professor Nick Spencer and Dr Janet Read BACCH Annual Scientific Meeting 2012
Chronic disabling conditions in childhood • In the UK, between 5% - 7% of children defined as disabled and have legal entitlements under Equalities legislation • Children with chronic disabling conditions experience greater material hardship, adversity and social exclusion than other children • Substantial impacts on children themselves, their families and on health, social care and education systems • Reducing both the prevalence of childhood disabling conditions and the impact on the lives of children and their families is important • Need for robust evidence
Current knowledge • Aetiology not fully understood • Large number of studies but many lack robust methods and measures • Cross-sectional studies give a snapshot of the circumstances of disabled children and their households at specific point in time • Need longitudinal studies to answer questions about causality (World Report on Disability 2011)
Our study • Data from a systematic review and secondary analysis on ONS Longitudinal study • We use the term ‘children with chronic disabling conditions’ • ‘disability is an evolving concept…. . disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others’ (UNCRPD)
The study: acknowledgements • Thanks to the project advisory group for their support and guidance: Rachael Barnes, Liz Willetts, Jan Sunman, Grahame Whitfield, Eric Emerson, Neil Raymond. • We would like to acknowledge the help we received with this major literature review from Diane Clay who did the searches and Jas Bain who sourced the papers for review, helped us organise the data and provided administrative support. • The permission of the Office for National Statistics to use the Longitudinal Study is gratefully acknowledged, as is the help provided by staff of the Centre for Longitudinal Study Information & User Support (Ce. LSIUS). Ce. LSIUS is supported by the ESRC Census of Population Program). The authors alone are responsible for the interpretation of the data. • Census output is Crown copyright and is reproduced with the permission of the Controller of HMSO and the Queen's Printer for Scotland. • This work was supported by the Economic and Social Research Council [grant number RES-062 -23 -2883].
What does the international literature tell us about childhood disability and social disadvantage in high income countries?
How we searched the literature We conducted a systematic review of population-based studies which reported data on the association of socio-economic status (SES) with chronic disabling conditions in childhood in high income countries We searched a wide range of electronic databases (including Medline, Embase, Psych-Info, EBSCO, Web of Science) and other sources Inclusion criteria: 1. Published between 1 st January, 1991 to 8 th February 2011 2. Original study [reviews excluded] 3. Relationship of SES with chronic disabling conditions in childhood reported 4. Reported conditions must be chronic AND associated with limitation of normal daily activity 5. Whole population studies – studies of selected population groups excluded 6. Studies using valid SES measures 7. High income countries
How many papers/reports did we find? Abstracts identified by search 4620 Full papers/reports obtained 699 Main exclusions: Not chronic/limiting SES/disability relation not reported Not whole population study Included studies/reports 134
What do the included papers show? • Studies from 15 countries – majority from UK and USA • 83. 6% show a statistically significant relationship with social disadvantage (low income/poverty/low education [usually maternal]/ low occupational social class/ area-based deprivation) by at least one outcome – see following slides • Not all conditions associated with social disadvantage – Type 1 Diabetes Mellitus & less common psychological disorders such as autism show no relationship & Crohn’s disease appears to have a positive relationship with social advantage
Chronic disabling conditions (CDCs) 1 CDCs combined Psych disorder (any) ID (all; mild; mod/ severe) CP Epilepsy Asthma (severe/ hospital) 20 58 23 6 7 9 Related to 17 low SES (p<0. 05) 50 23 6 5 7 Related to None high SES (p<0. 05) 1 None Number of studies
Chronic disabling conditions (CDCs) 2 Neural Tube defects Cleft lip & palate Hearing Vision Congenital anomaly Other 6 4 6 8 Related to 4 low SES (p<0. 05) 3 4 2 3 3 Related to None high SES (p<0. 05) None 1 Number of studies
Focus on specific outcomes: Chronic disabling conditions combined • These studies were of particular relevance to our project as we studied all chronic disabling conditions in the Office of National Statistics Longitudinal Study (ONSLS) • Countries: 9 UK; 7 USA; 2 Nordic; 1 Canada & UK • Study design: 19 Cross-sectional; 1 longitudinal • Range of ages but mainly covering ages from 2 to 17 years • Overall clear evidence of relationship with social disadvantage
Meta-analysis of CDCs combined
Focus on specific outcomes: 2. Intellectual disability (ID) • These studies include those reporting on mild ID (IQ 50 -70), moderate/severe (<50) and on all ID (<70) • Countries: 8 UK; 8 USA; 4 Finland; 2 Australia; 1 Israel • Study design: 9 cross-sectional; 6 routinely collected data; 4 longitudinal; 4 case-control • Range of ages: child (<13) = 7; adolescent (13+) = 1; child & adolescent = 15 • Both mild and moderate/severe ID related to social disadvantage (see next slide)
Meta-analysis of moderate/severe ID
Focus on specific outcomes: 3. Cerebral Palsy (CP) • These studies include those reporting on children born with CP and CP acquired usually due to trauma • Countries: 3 UK; 1 USA; 1 Sweden; 1 Denmark • Study design: 3 routinely collected data; 2 register-based; 1 longitudinal • Range of ages: most diagnosed by age 2 years • Relationship to SES disputed in past but our findings suggest social disadvantage is associated with CP
Meta-analysis of Cerebral Palsy
Focus on specific outcomes: 4. Visual impairment • These studies include children reported to be visually impaired by their parents • Countries: 1 UK; 1 USA; 1 Nordic countries; 1 Australia • Study design: 2 Cross-sectional; 2 Longitudinal • Range of ages: 2 in early childhood (<9); 2 across childhood & adolescence (0 -17) • Relationship with SES less clear than for other conditions partly as very few studies & all parental report
Systematic review summary • Our review indicates that chronic disabling conditions in childhood are associated with social disadvantage in rich nations confirming our UK findings • Studies of the most common chronic disabling conditions in childhood (psychological disorders, ID, CP and severe asthma) are consistent in showing relationship with social disadvantage • A few conditions show no relationship and only 2 studies suggest a positive relationship with high SES • More robust studies needed in relation to sensory impairment
Social disadvantage in early childhood and the reported onset on chronic disabling conditions in later childhood/early adulthood Exploring the temporal pathway
What did we want to find out? Our research questions In children without any reported chronic disabling conditions: • Is exposure to social disadvantage in early childhood associated with reported onset of chronic disabling conditions in later childhood? • If so, is the association graded by degree of social disadvantage? • In other words, is the risk of reported onset of a chronic disabling condition in later childhood greater the poorer the child’s circumstances?
Study design and methods • We analysed data from the Office for National Statistics Longitudinal Study (ONS-LS) • The ONS- LS contains linked Population Census and vital event data for 1 per cent of the population of England Wales. • Information from the 1971, 1981, 1991 and 2001 Censuses has been linked across censuses as well as information on events such as births, deaths and cancer registrations. • ONS-LS also has data on other people living in the same household as ONSLS members e. g. parents • People with chronic disabling conditions identified through census question: Do you have any long-term illness, health problem or disability that limits your daily activities or the work you can do?
Children in the sample • 61, 603 children born between 1981 and 1991 who were ONS-LS members and tracked in 1991 and 2001 Population Censuses • Information on the children and their household circumstances • Two groups: – Index group: children reported as not having a chronic disabling condition in 1991 but reported as having one in 2001 (2049 with complete data) – Comparison group: children not reported to have disabling chronic condition in 1991 or 2001 (50790 with complete data)
Analysing the data • Used the data on household circumstances to construct a social disadvantage index built up from 3 pieces of information (variables): – Housing tenure: owner occupied v rented/other – Social class of household: high (1 -3 ) v low (4 -5) – Car/van ownership: 1 or more cars/vans v 0 cars/vans • Scored each factor (variable): – 0 = no disadvantage – 1 = indicates disadvantage. – Scores summed to give an aggregate score of 0 -3, where 0 = not disadvantaged on any factor and 3 = disadvantage on all 3 factors • Logistic regression models – Controlled for potential confounders: child’s age, child’s sex, child’s ethnicity, family status
Data analysis • Logistic regression models fitted on index/comparison : – Model 1: Social disadvantage index entered alone – Model 2: Social disadvantage index plus child’s age & sex – Model 3: above plus child’s ethnicity – Model 4: above plus family status
Findings
Children in the sample Characteristics Index group Comparison group p value (no CDC in 1991 but developed CDC by 2001) n = 2049 (no CDC in 1991 or 2001) n = 50790 Sex: Boys Girls 55. 2% 44. 8% 50. 8% 49. 2% <0. 001 Mean age (‘ 01) 14. 67 14. 56 <0. 01 Ethnicity: White Black Indian Pakistani/Bangladeshi Other 91. 7% 5. 2% 0. 5% 1. 3% 0. 8% 92. 4% 5. 2% 0. 5% 1. 5% 0. 5% Family status in ‘ 91: Lone parent household 16% 11. 3% <0. 001 8. 2% 12. 6% 24. 6% 54. 6% 8. 1% 20. 5% 66. 8% <0. 001 (linear trend) Social disadvantage index in ‘ 91: Disadvantaged in 3 areas Disadvantages in 2 areas Disadvantaged in 1 area Not disadvantaged Compared with White group: 0. 28 0. 79 0. 57 0. 06
For children who didn’t have chronic disabling conditions in 1991 • The reported onset of chronic disabling conditions in later childhood was positively associated with exposure to social disadvantage in earlier childhood • This association persisted after controlling for the effect of child’s age, sex, ethnicity and family status (see next slide) • The odds of reported onset of chronic disabling conditions in later childhood increased as the level of household disadvantage rose • For children in the most disadvantage group in 1991, the odds of reported onset of chronic disabling conditions by 2001 were more than twice those for children living in the least disadvantaged households.
Odds of a child without any reported chronic disabling condition in 1991 reported as developing one by 2001 Independent variables Model 1 Model 2 Model 3 Model 4 Social disadvantage index Disadvantage in 3 2. 20 (1. 86, 2. 59)* 2. 21 (1. 87, 2. 62)* 2. 20 (1. 87, 2. 62)* 2. 11 (1. 76, 2. 53)* Disadvantage in 2 1. 49 (1. 25, 1. 79)* 1. 50 (1. 26, 1. 80)* 1. 51 (1. 26, 1. 81)* 1. 45 (1. 20, 1. 75)* Disadvantage in 1 1. 15 (0. 94, 1. 41) 1. 16 (0. 95, 1. 41) 1. 14 (0. 93, 1. 39) No disadvantage (ref) 1. 00 Odds ratio (95%CI) Adjusted odds ratio (95% CI) Model 1: social disadvantage index Model 2: social disadvantage, sex and age Model 3: social disadvantage index, sex, age and ethnicity Model 4: social disadvantage index, sex, age, ethnicity and family status * P = or < 0. 05 Adjusted odds ratio (95%CI)
Population attributable risk • For children reported as exposed to social disadvantage in earlier childhood, the population attributable risk for reported onset of chronic disabling conditions in later childhood was 17. 5% • If all children had the same chances as children reported as not exposed to social disadvantage in earlier childhood, there would have been 359 fewer children reported as having chronic disabling conditions in later childhood.
Strengths and limitations of the study • • Strengths: • ONS-LS is a large, representative data source with sufficient power to account for potential confounding by age, sex, gender, family structure, social disadvantage • Longitudinal design thus able to examine temporal ordering (sequencing) • High response rate (94%) due to legal requirement to complete census form Limitations – Non-participation, loss at follow up, missing data are possible threats to validity – Participation in UK census is socially patterned, with lower response from socially disadvantaged areas – findings likely underestimate the impact of social disadvantage on the relationships considered – 1991 and 2001 censuses used a single, generic question to identify report chronic disabling conditions
In summary Children reported as not having any chronic disabling conditions when they were 0 -10 years: • Were at greater risk of being reported as having a chronic disabling condition in later children (10 -20 years) if they experienced social deprivation in early childhood • Their degree of risk was associated with the extent of social disadvantage experienced • The level of exposure to social disadvantage matters
Concluding remarks • Need for further studies to clarify length of exposure, clarify mechanisms and pathways • Research is crucial to the development of policies and programmes to reduce both the prevalence of childhood chronic disabling conditions and the impact on the lives children and their families. • Issues of prevention of impairment and chronic disabling conditions need careful and informed discussion • Need for a multi-dimensional strategy to reduce social disadvantage in early childhood • In an age of austerity, children and their families are particular vulnerable
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