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. 2022 Dec;31(4):e1926.
doi: 10.1002/mpr.1926. Epub 2022 Aug 10.

The importance of definitions in the measurement of long-term health conditions in childhood. Variations in prevalence of long-term health conditions in the UK using data from the Millennium Cohort Study, 2004-2015

Laura Panagi  1 , Simon R White  1 , Sohum Patel  2 , Sophie Bennett  3 , Roz Shafran  3 , Tamsin Ford  1
Affiliations

The importance of definitions in the measurement of long-term health conditions in childhood. Variations in prevalence of long-term health conditions in the UK using data from the Millennium Cohort Study, 2004-2015

Laura Panagi et al. Int J Methods Psychiatr Res. 2022 Dec.

Abstract

Objectives: To explore the impact of various measurements of long-term health conditions (LTCs) on the resulting prevalence estimates using data from a nationally representative dataset.

Methods: Children and young people in the Millennium Cohort Study were followed at ages 3, 5, 7, 11, and 14 years (N = 15,631). We estimated the weighted prevalence of LTCs at each time point and examined the degree to which estimates agreed with alternate health indicators (special educational needs and disability [SEND], specific chronic conditions, and common chronicity criteria) using descriptive analyses, Cohen's kappa statistic, and percentage agreement.

Results: The estimated weighted prevalence of LTCs peaked at 5 years old (20%). Despite high percentage agreement, we observed at best moderate chance-corrected agreement between the type of LTC and reasons for SEND (kappas from 0.02 to 0.56, percentage agreement from 97% to 99%) or specified chronic conditions (kappas from 0.002 to 0.02, percentage agreement from 73% to 97%). Applying chronicity criteria decreased the estimated weighted prevalence of LTCs (3%).

Conclusion: How long-term conditions are defined drastically alters the estimated weighted prevalence of LTCs. Improved clarity and consistency in the definition and measurement of LTCs is urgently needed to underpin policy and commissioning of services.

Keywords: childhood; definitions; long-term conditions; measurement.

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Conflict of interest statement

The author declares that there is no conflict of interest that could be perceived as prejudicing the impartiality of the research reported.

Figures

FIGURE 1
FIGURE 1
The weighted prevalence estimates of any longstanding health conditions and special educational needs and disability from age 3 to age 14. LTC, long‐term condition; SEND, special educational needs and disability
FIGURE 2
FIGURE 2
Venn diagram illustrating the subsamples of CYP with estimated weighted prevalence of long‐term conditions who meet the two chronicity criteria in the Millennium Cohort Study. CYP, children and young people; LTC, long‐term condition
FIGURE 3
FIGURE 3
The estimated weighted prevalence of any longstanding health conditions in CYP measured using the two chronicity criteria available in the Millennium Cohort Study. Error bars are 95% confidence intervals of proportions. CYP, children and young people
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