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Abstract
Background We assessed the biopsychosocial needs and key health drivers among children living with a common chronic illness, as baseline for a cluster randomised controlled trial of a child health system strengthening intervention.
Methods Cross-sectional data were analysed from a large population sample of children from South London with asthma, eczema or constipation, as exemplar tracer conditions of a new integrated care service. Descriptive and regression analyses, accounting for sociodemographic factors, investigated social needs, psychosocial outcomes and quality of life associated with poor symptom control.
Results Among 7779 children, 4371 children (56%) had at least one uncontrolled physical health condition. Across the three domains of physical health, mental health and social needs, 77.5% of children (n=4304 of 5554) aged 4–15 years had at least one unmet need, while 16.3% of children had three unmet needs. Children from the most socioeconomically disadvantaged quintile had a 20% increased risk of at least one poorly controlled physical condition (risk ratio (RR)=1.20, 95% CI: 1.11 to 1.31, p<0.001) compared with those from the least disadvantaged quintile. There was an 85% increased risk of clinically important mental health needs among children with uncontrolled asthma (RR=1.85, 95% CI: 1.65 to 2.07, p<0.001), 57% for active constipation (RR=1.57, 95% CI: 1.12 to 2.20, p<0.01) and 39% for uncontrolled eczema (RR=1.39, 95% CI: 1.24 to 1.56, p<0.001). Health-related quality of life was associated with poor symptom control.
Conclusions There is a large burden of unmet biopsychosocial needs among children with chronic illness, signalling an urgent need for prevention, early intervention and integrated biopsychosocial care.
- Epidemiology
- Paediatrics
- Child Health
Data availability statement
Data are available upon reasonable request.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Previous research has shown increased prevalence of asthma, eczema and constipation in children from lower socioeconomic groups.
In addition, our team among others has demonstrated the overlap between chronic illness and increased mental health difficulties in children.
No previous work has however shown the full biopsychosocial needs of a large UK child population with primary care-diagnosed chronic health needs.
WHAT THIS STUDY ADDS
This study explores the active unmet biopsychosocial needs of nearly 8000 urban children from the UK with one of three common chronic general practitioner (GP)-diagnosed health conditions: asthma, eczema and constipation.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
Across the three domains of physical, mental health and social needs, 77.5% of children diagnosed by their GP with a chronic illness had at least one active unmet need, while 16.3% of children had three unmet needs.
Health needs were socially mediated.
This study highlights the importance of integrated care and active follow-up of children with known common childhood diagnosis, especially those from lower socioeconomic groups, to optimise the physical, mental and social health of children at a population level.
Introduction
Chronic conditions affect at least one in five children and account for 79% of all disability-adjusted life years lost among children aged 1–14 years across Europe.1–3 The marked decrease in child mortality over the last century, through improvements in public health and paediatric care, has been mirrored by an increase in childhood chronic illness and disability.1 This increase in chronic disease has placed a growing burden on the already strained public health systems.4
Health systems in high-income countries were developed to deliver acute, inpatient and specialist services. Acute hospital-based care, due to its siloed nature, was never set up to provide the holistic care needed to meet the physical, psychological and social needs of children and families.4 Approximately 5.2 million children in the UK, more than 30% of the population aged <18 years, live in poverty.5 Previous meta-analysis using data from 1991 to 2013 showed 72% increased odds of chronic disabling illness among children living in poverty.6 More recent longitudinal research from the UK, Canada and Australia has again shown the effect of poverty on chronic illness in childhood.7 8 The importance of comorbid physical and mental health conditions is increasingly recognised.9 There is, however, limited literature assessing the association of childhood poverty with severity of chronic illness, and the mental health and social needs of children with chronic illness.
We aimed to describe the concurrent physical, psychological and social needs of a large population of nearly 8000 children living in South London, who had selected tracer conditions: asthma, constipation or eczema. We assessed the association and clustering between social need, physical and mental health, and health-related quality of life (HRQoL). This analysis of unmet need served as a baseline assessment to inform a population-based biopsychosocial approach to paediatric healthcare subsequently evaluated with a cluster randomised controlled trial.10 11
Methods
Study population
This cross-sectional study was part of the Child and Young People’s Health Partnership (CYPHP) Programme whose model of care was designed to improve the health of children with general and long-term health conditions.10 Data were collected from 1 April 2018 to 31 December 2020.
The study was based in Southwark and Lambeth, two boroughs in South London with high levels of deprivation and ethnic diversity.11 Children with three common and long-term exemplar (tracer) paediatric conditions: asthma, constipation and eczema, were identified using primary care records. Inclusion criteria are presented in online supplemental table S1. These tracer conditions were selected as exemplars of long-term conditions where effective self-management should be achieved in a primary care setting to help reduce unnecessary use of and burden on secondary care services. The parents/guardians of children meeting criteria for one of these diagnoses were invited to complete the online health check (HC) assessment to identify their unmet biopsychosocial needs to personalise care and health management.
Supplemental material
Physical health
The Asthma Control Test (ACT) was used to identify children with uncontrolled asthma, indicated by an ACT score of <20 and signifying need for clinical care.12 Eczema severity was determined using the Patient-Oriented Eczema Measure, ranging from ‘clear to mild’ (score of ≤7) to ‘moderate to very severe’ (score of 8–28); the latter was considered uncontrolled eczema.13 The CYPHP team developed a clinically accepted constipation symptoms checklist based on the National Institute for Health and Care Excellence (NICE) guidelines and the Bristol stool chart.14 Children whose score was ≥3 were considered to have active or uncontrolled constipation.
Family’s social concerns
A questionnaire was derived from the validated instrument ‘We Care’ on a range of psychosocial needs considered clinically relevant and common for low-income families, including concerns about housing, food security and paying bills, parental mental health, having a smoker in the household and parental unemployment15 16 (online supplemental background).
Emotional difficulties
Emotional and behavioural difficulties of children aged 4–15 years were assessed using the parent-reported scores of the Strengths and Difficulties Questionnaire (SDQ), which is a widely used measure to assess emotional and behavioural outcomes of children.17 We calculated the SDQ total score (range 0–40), the internalising problem score (sum of emotional and peer problems scales scores), the externalising problem score (sum of conduct problems and hyperactivity scales scores) and the impact supplement score. We followed SDQ guidelines to identify children with ‘abnormal’ (SDQ total score ≥17) versus ‘normal or borderline’ (SDQ total score <17) levels of emotional and behavioural difficulties.17
Health-related quality of life
Children who completed the HC assessment were invited to participate in the CYPHP trial follow-up for which additional patient-reported outcomes were collected.11 HRQoL was assessed using the parent-administered Paediatric Quality of Life Inventory (PedsQL) questionnaire. The PedsQL has been widely used in child health research including children with a chronic illness.18–20 We calculated both raw (sum of items divided by the number of items responded) and T-score (the number of sample SDs from the sample mean, calculated separately for each PedsQL age group). A higher PedsQL score indicates a better HRQoL.
Sociodemographic factors
Data on sociodemographic factors including sex, age, ethnicity and postcode-level residential area socioeconomic status (SES) were collected. SES quintiles were determined using the Indices of Multiple Deprivation (IMDs) (2019 version). Due to small numbers, we combined the highest two quintile categories (ie, Q4 and Q5) to a single category (ie, the least disadvantaged).
Statistical analysis
We described symptom status by sociodemographic factors. Modified Poisson regression analyses were used to assess the risk of having uncontrolled tracer condition symptoms associated with the sociodemographic factors. Linear regression analysis was used to examine the mean difference in emotional and behavioural difficulties (SDQ score) and HRQoL (PedsQL T-score) between children with and without a controlled tracer condition. Robust SEs were used to calculate 95% CIs. Analyses controlled for sociodemographic factors (sex, age, ethnicity and residential area SES). We conducted a sensitivity analysis by further controlling for other two tracer conditions to explore how comorbidity of the three tracer conditions impacted the association related to a single tracer condition (online supplemental table S2). The proportions of missing data were generally <5% for variables examined except for PedsQL scores (10–16%). Thus, multiple imputations for missing data were used in the regression analysis of PedsQL scores using the Fully Conditional Method. We examined outliers by examining studentised residuals. We tested multicollinearity of independent variables in the regression analysis by examining variance inflation factors. We also tested normality of residuals for the linear regression analyses, using quantile–quantile plots. All the analyses were conducted using SAS (Enterprise Guide) statistical software V.7.1 (SAS Institute).
Results
A total of 7779 individual children had a complete HC assessment (demographic characteristics in online supplemental table S3). There were slightly more children from white ethnic groups and fewer children from the most disadvantaged area (ie, IMD quintile 1) in the study population, but otherwise the study population was comparable with the total invited population (n=15 945; online supplemental table S4).
Among 7779 participants, 5923 (76.1%) had one tracer condition, 1592 (20.5%) two conditions and 113 (1.5%) three conditions; 151 (1.9%) had a missing value on the status of at least one tracer condition. There were 9609 person-conditions (considering comorbidity across the three tracer conditions): 3616 children with asthma, 1502 children with constipation and 4491 children with eczema. A total of 1412 (39.1%) were defined as having uncontrolled symptoms (by ACT score); 88.5% (n=1329) had active constipation symptoms; and 2278 (50.7%) had moderate, severe or very severe (ie, uncontrolled) symptoms of eczema. In summary, of the 7779 children with at least one tracer condition, 4371 (56.2%) had at least one uncontrolled condition (online supplemental table S3).
Compared with white children, there was an 8% increased risk of having at least one poorly controlled tracer condition among black (risk ratio or RR=1.08, 95% CI: 1.03 to 1.13, p<0.001) and Asian (RR=1.08, 95% CI: 1.01 to 1.17, p=0.03) children, after controlling for age, gender and socioeconomic status (table 1). Compared with children from the least disadvantaged area, children from the most socioeconomically disadvantaged quintile had a 20% increased risk of having at least one poorly controlled condition (RR=1.20, 95% CI: 1.11 to 1.31, p<0.001). The RRs were highest for children with asthma.
Risk ratios (RRs) of having an uncontrolled or a severe tracer condition by sociodemographic factors (n=7779)
In general, children with at least one uncontrolled tracer condition had significantly more parent-reported social concerns compared with children with controlled symptoms (figure 1 and online supplemental table S5). Of the three conditions, asthma control had the highest cross-sectional overlap with social concerns: children with poorly controlled asthma, compared with those who had controlled symptoms, had an increased risk ranging from 16% for parent smoking (RR=1.16, 95% CI: 0.98 to 1.37, p=0.09) to over twofold for having food concerns (RR=2.18, 95% CI: 1.62 to 2.93, p<0.001) (table 2). Results for children with eczema mirrored those for children with asthma (table 2).
Proportion of participants having a social concern by tracer condition status (n=7779).
Risk ratios (RRs) of exposure to a social concern by tracer condition status (n=7779)
Among 5554 children aged 4–15 years, there was an 85% (95% CI: 1.65% to 2.07%, p<0.001), 57% (95% CI: 1.12% to 2.20%, p<0.01) and 39% (95% CI: 1.24% to 1.56%, p<0.001) increased risk of SDQ defined clinically important mental health difficulties, among children with uncontrolled versus controlled asthma, constipation and eczema, respectively (table 3). These increased risks were mirrored for the SDQ impact supplement scale (table 3) and across internalising and externalising behaviours (online supplemental table S6). Of the 5554 children aged 4–15 years, 77.5% (n=4304) had at least one uncontrolled tracer condition, clinically important mental health difficulties or family social concerns, with 46.6% (n=2005) having one, 37.1% (n=1597) having two and 16.3% (n=702) having three unmet needs.
Association between tracer conditions and SDQ categories, among children aged 4–15 years (n=5554)
In total, 1731 parents consented to further assessment including HRQoL, measured using the PedsQL score. There was similar sociodemographic distribution between children with an HC assessment and children consenting to the HRQoL assessment (online supplemental table S4). We report the results based on the complete case analysis in the main text and the similar results from the multiple imputation analysis in online supplemental table S7. The PedsQL score was decreased by 11.75 points (95% CI: −14.72 to −8.77, p<0.001), 4.75 points (95% CI: −6.94 to −2.55, p<0.001) and 5.54 points (95% CI: −11.99 to 0.90, p=0.09) among children with poorly controlled asthma, eczema and constipation compared with those with controlled symptoms, respectively. These magnitudes of decrease equate to adjusted mean difference for PedsQL T-score of −0.66 (95% CI: −0.83 to −0.5, p<0.001), –0.30 (95% CI: –0.43 to –0.17, p<0.001) and −0.31 (95% CI: −0.71 to 0.08, p=0.12) (table 4). The mean PedsQL score was significantly lower in both the PedsQL physical and psychosocial scores for children with uncontrolled asthma and eczema than those with controlled symptoms.
Association between tracer condition and PedsQL outcome, among consented population (n=1731) (complete case analysis)
Discussion
This study provides a detailed analysis of psychological and social factors of health and unmet needs among children with common chronic childhood illness. Even though all the children surveyed were known to their general practitioner (GP) and were diagnosed with either asthma, eczema or constipation on GP records, over half of these children had poorly controlled symptoms. As such, treatment has been suboptimal as the three conditions selected have clear evidence-based guidelines for optimal monitoring and management which result in clear benefit and symptom reduction, for example, NICE guidelines for asthma control.21 If half of the children with these diagnoses are in the community with active symptoms, either the initial treatment was ineffective or monitoring and follow-up has been inadequate. As per guidelines, asthma control should be checked at every review (at least annually).21 Our results suggest this frequent review is either not happening or not being implemented effectively. The UK National Review of Asthma Deaths found that 46% of those who died from asthma had received an inadequate standard of asthma care, with personal action plans provided to only 23% of patients.22
Children with poorly controlled physical health symptoms were significantly more likely to have food, housing, financial, employment and parental mental health concerns, and were 39–85% more likely to have clinically important mental health difficulties. We know that children from the poorest families are more likely to have chronic illnesses and more than twice as likely to die before they reach adulthood, compared with children from wealthier families.5 In addition, children who have greater health needs are also less likely to access healthcare, known as the inverse care law.23
Countries with the highest asthma mortality rates for young people aged 10–24 years among 19 high-income countries (2016 data) were the USA, New Zealand, Australia and the UK.24 This additional mortality may reflect the social determinants of health and health inequalities within these countries. Fleegler et al found that 54% of urban US families with children aged 0–6 years had two or more unmet social needs and 49% needed referral to child health services.25 In total, 56% of families had significant housing concerns and 28% were food insecure.25 Using a framework based on Maslow’s Hierarchy of Needs, Federico et al describe a clinical screening tool for social determinants of health in the context of childhood asthma.26 In essence, clinicians cannot expect families to optimise a child’s chronic health management unless they are safe and fed, that is, their physiological and safety needs are met.
The strengths of this study include detailed analyses of the biopsychosocial needs of a sample of nearly 8000 urban UK children with GP-diagnosed and recorded chronic illness. Limitations include the sample being based in one urban area, although highly diverse, and potential selection and recall bias of participants. Children with poorly controlled symptoms could be more likely to respond to the health check, and families may be more likely to report psychological or social needs. However, this is unlikely as our findings replicate and support international literature in this area.25 26 Our sample was cross-sectional and as such, we cannot prove causality. Further, our data do not include information on health conditions other than the tracer conditions. However, we were able to control for comorbidity between the three tracer conditions and this did not significantly influence our results. The screener for psychosocial concerns used in this study, though not validated in this sample, was derived from the validated We Care instrument that captures common psychosocial needs of low-income families.15 16
Social determinants have been long recognised as a major cause for health inequity and child health morbidity globally.27 28 Our analysis highlights the need to address the social factors of health through holistic and integrated interventions involving a range of health and care community stakeholders (eg, primary care practitioners, community-based services, social welfare). This holistic view of child health needs can create a ‘safety net’ within a value-based care framework.29 In the USA, Australia and the UK, community-based integrated care has been shown to improve the quality of care, HRQoL and in some studies significantly reduce hospital referrals.10 30–32 Further high-quality experimental health services research is urgently needed to assess integrated care solutions to provide care for unmet biopsychosocial needs and improve health outcomes for children.33
Conclusion
This study highlights the urgent and unmet biopsychosocial needs of children. The overlap between the physical, psychological and social needs of children highlights the need for an integrated health and social welfare systems response to meet needs, reduce health inequalities and improve child health outcomes.
Data availability statement
Data are available upon reasonable request.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and ethics approval was obtained from Southwest Cornwall & Plymouth Research Ethics Committee on 14 December 2017 (REC reference: 17/SW/0275). Participants gave informed consent to participate in the study before taking part.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
RL and NH are joint first authors.
Contributors RL, as co-principal investigator and external evaluation lead, conceptualised the work, developed the methodology and led the investigation and analyses, wrote, reviewed and edited the manuscript. NH carried out the analysis, wrote, reviewed and edited the manuscript. EC, as trial coordinator, oversaw data collection, carried out data analysis, wrote, reviewed and edited the manuscript. JF, as trial statistician, carried out data analysis, wrote, reviewed and edited the manuscript. JN, as trial coordinator, oversaw data collection, reviewed and edited the manuscript. R-MS carried out data collection, reviewed and edited the manuscript. MSB, SC and JF-R advised on data collection, reviewed and edited the manuscript. IW, as principal investigator, conceptualised the work, acquired funding, developed the methodology and oversaw the investigation and analyses, and edited the manuscript. RL is guarantor.
Funding The CYPHP trial was funded by Guy’s and St Thomas Charity, Lambeth and Southwark Clinical Commissioning Groups (ref. HIF180101KCL). RL is supported through the Financial Markets for Children Charity. IW and JF are supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust.
Disclaimer The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.