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

TY - JOUR

T1 - 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

AU - Panagi, Laura

AU - White, Simon R.

AU - Patel, Sohum

AU - Bennett, Sophie

AU - Shafran, Roz

AU - Ford, Tamsin

N1 - Funding Information: We thank the Beryl Alexander Charity for funding this study. Publisher Copyright: © 2022 The Authors. International Journal of Methods in Psychiatric Research published by John Wiley & Sons Ltd.

PY - 2022/12

Y1 - 2022/12

N2 - 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.

AB - 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.

KW - childhood

KW - definitions

KW - long-term conditions

KW - measurement

UR - http://www.scopus.com/inward/record.url?scp=85135623900&partnerID=8YFLogxK

U2 - 10.1002/mpr.1926

DO - 10.1002/mpr.1926

M3 - Article

C2 - 35950235

AN - SCOPUS:85135623900

SN - 1049-8931

VL - 31

JO - International Journal of Methods in Psychiatric Research

JF - International Journal of Methods in Psychiatric Research

IS - 4

M1 - e1926

ER -