child healthcare research topics

• Introduction
• Conclusions
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eTable 1. Survey Items Used in Measures for Children’s Health Conditions, Positive Health Behaviors, Health Care Access/Utilization, and Family Well-being and Stressors, 2016-2020 National Survey of Children’s Health

eTable 2. Unadjusted Frequency and Prevalence of Child Health Conditions, Positive Health Behaviors, Health Care Access/Utilization, and Family Well-being, 2016-2020 (N=174,551)

• Change to Open Access Status JAMA Pediatrics Correction July 1, 2022
• Pandemic’s Paradoxical Effect on Child Health and Well-being JAMA Pediatrics Editorial July 5, 2022 Paul H. Wise, MD, MPH; Lisa J. Chamberlain, MD, MPH
• Coding Error and Errors in Estimates JAMA Pediatrics Correction March 1, 2023

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Lebrun-Harris LA , Ghandour RM , Kogan MD , Warren MD. Five-Year Trends in US Children’s Health and Well-being, 2016-2020. JAMA Pediatr. 2022;176(7):e220056. doi:10.1001/jamapediatrics.2022.0056

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Five-Year Trends in US Children’s Health and Well-being, 2016-2020

• 1 US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau
• Editorial Pandemic’s Paradoxical Effect on Child Health and Well-being Paul H. Wise, MD, MPH; Lisa J. Chamberlain, MD, MPH JAMA Pediatrics
• Correction Change to Open Access Status JAMA Pediatrics
• Correction Coding Error and Errors in Estimates JAMA Pediatrics

Question   What are the recent trends in children’s health, including significant changes that might be attributed to the COVID-19 pandemic?

Findings   Between 2016 and 2020, there were significant increases in children’s diagnosed anxiety and depression, decreases in physical activity, and decreases in caregiver mental and emotional well-being and coping with parenting demands. After the onset of the pandemic specifically, there were significant year-over-year increases in children’s diagnosed behavioral or conduct problems, decreases in preventive medical care visits, increases in unmet health care needs, and increases in the proportion of young children whose parents quit, declined, or changed jobs because of child care problems.

Meaning   Study findings point to several areas of concern that can inform future research, clinical care, policy decision making, and programmatic investments to improve the health and well-being of children and their families.

Importance   Ensuring the well-being of the 73 million children in the United States is critical for improving the nation’s health and influencing children’s long-term outcomes as they grow into adults.

Objective   To examine recent trends in children’s health-related measures, including significant changes between 2019 and 2020 that might be attributed to the COVID-19 pandemic.

Design, Setting, and Participants   Annual data were examined from the National Survey of Children’s Health (2016-2020), a population-based, nationally representative survey of randomly selected children. Participants were children from birth to age 17 years living in noninstitution settings in all 50 states and the District of Columbia whose parent or caregiver responded to an address-based survey by mail or web. Weighted prevalence estimates account for probability of selection and nonresponse. Adjusted logistic regression models tested for significant trends over time.

Main Outcomes and Measures   Diverse measures pertaining to children’s current health conditions, positive health behaviors, health care access and utilization, and family well-being and stressors.

Results   A total of 174 551 children were included (annual range = 21 599 to 50 212). Between 2016 and 2020, there were increases in anxiety (7.1% [95% CI, 6.6-7.6] to 9.2% [95% CI, 8.6-9.8]; +29%; trend P  < .001) and depression (3.1% [95% CI, 2.9-3.5] to 4.0% [95% CI, 3.6-4.5]; +27%; trend P  < .001). There were also decreases in daily physical activity (24.2% [95% CI, 23.1-25.3] to 19.8% [95% CI, 18.9-20.8]; −18%; trend P  < .001), parent or caregiver mental health (69.8% [95% CI, 68.9-70.8] to 66.3% [95% CI, 65.3-67.3]; −5%; trend P  < .001), and coping with parenting demands (67.2% [95% CI, 66.3-68.1] to 59.9% [95% CI, 58.8-60.9]; −11%; trend P  < .001). In addition, from 2019 to 2020, there were increases in behavior or conduct problems (6.7% [95% CI, 6.1-7.4] to 8.1% [95% CI, 7.5-8.8]; +21%; P  = .001) and child care disruptions affecting parental employment (9.4% [95% CI, 8.0-10.9] to 12.6% [95% CI, 11.2-14.1]; +34%; trend P  = .001) as well as decreases in preventive medical visits (83.3% [95% CI, 82.3-84.3] to 78.1% [95% CI, 77.1-79.0]; −6%; trend P  < .001).

Conclusions and Relevance   Recent trends point to several areas of concern that can inform future research, clinical care, policy decision making, and programmatic investments to improve the health and well-being of children and their families. More analyses are needed to elucidate varying patterns within subpopulations of interest.

In 2019, there were 73 million children aged 0 to 17 years living in the United States, which is 22% of the population. 1 Improving the country’s overall health status requires a focus on the well-being of children and their families, as this critical period can have lifelong health effects. 2 - 4 Although children are generally perceived to be healthy, significant proportions are affected by various health conditions, including an estimated 1 in 5 children who have special health care needs. 5 Recent studies have documented increasing rates of developmental disabilities, diabetes, and overweight and obesity. 6 - 8 Healthy People 2030, the federal initiative that tracks data-driven objectives to improve the nation’s health, highlights several avenues to improve children’s health and well-being: ensuring access to timely health care services, promoting positive health behaviors, and strengthening supportive family relationships. 9 An assessment of related measures and recent trends in children’s health and health-related factors is needed to inform interventions and policy priorities. The COVID-19 pandemic has further underscored the need to monitor children’s health. In addition to the direct effects of the pandemic on pediatric populations (infection, hospitalization, and deaths), 10 the indirect effects have been pervasive, ranging from family economic hardships to reduced physical activity and increased screen time. 11 - 15

The recent release of the 2020 National Survey of Children’s Health (NSCH) offers an opportunity to examine 5-year trends in children’s well-being, including an exploration of potential effects of the COVID-19 pandemic. The purpose of this study was to assess changes over time in several domains: children’s health conditions, positive health behaviors, access to and utilization of health care services, and family well-being and stressors. We sought to answer (1) What are the recent trends across various children’s health-related measures? (2) Were there significant changes between 2019 and 2020, which might be attributed to the COVID-19 pandemic?

Data came from the NSCH, a nationally representative survey of children from birth to age 17 years living in noninstitution settings in the 50 states and the District of Columbia. Data are collected annually between June or July and January from parents or other primary caregivers through web- or paper-based questionnaires. The NSCH is funded and directed by Maternal and Child Health Bureau of the Health Resources and Services Administration and fielded by the US Census Bureau. More information about the survey methodology is available elsewhere. 16 - 18 The study used existing publicly available and deidentified data; therefore, it did not qualify as human subjects research and did not require institutional review board review. 19

We analyzed data from the years 2016 through 2020. The 2020 NSCH was fielded from June 2020 to January 2021; data collection was not disrupted by the COVID-19 pandemic. 18 Overall response rates ranged from 37% to 43% depending on year. Response rates are adversely affected by the 40% to 50% of sampled addresses that cannot be confirmed as occupied households yet are included in the denominator for response rate calculations. Interview completion rates, which represent the proportion of confirmed, occupied households with children who completed the survey, ranged from 70% to 81%. The analytic sample included children aged birth to 17 years, with measures of interest further restricted to narrower age groups as developmentally or clinically appropriate. The combined NSCH sample size for 2016 to 2020 included 174 551 children (annual range: 21 599-50 212).

Guided by Healthy People 2030, we considered a diverse set of measures related to children’s health. Specifically, we examined common health conditions, positive health behaviors, health care access and utilization, and family well-being and stressors (eTable 1 in the Supplement ). For children’s health conditions, we examined 9 current health problems (asthma, headaches/migraines, anxiety problems, depression, behavioral/conduct problems, autism, attention-deficit/hyperactivity disorder [ADHD], decayed teeth/cavities, overweight/obesity) as well as presence of special health care needs. 20

For positive health behaviors, we considered adequate sleep, daily reading to young children, and daily physical activity for school-aged children. For health care access, we examined current uninsurance, insurance adequacy and continuity, problems paying child’s medical bills, unmet health care needs, frustration obtaining health services for child, and having a usual source of sick care. For health care utilization, we included past-year receipt of preventive medical visits, preventive dental visits, specialty care, mental health treatment or counseling, and developmental screening. For preventive medical visits, we excluded data from 2018 because of a wording change in the survey item for that year.

Regarding family well-being and stressors, we considered primary caregiver physical and mental health status; perceptions of coping with the demands of raising children; quitting, declining, or changing jobs because of child care problems; and household food insufficiency. We also examined selected adverse childhood experiences during the child’s lifetime.

We pooled 5 years of data into a single datafile, which included a variable for survey year. We produced weighted unadjusted prevalence estimates, along with 95% CIs, for each year between 2016 and 2020 (eTable 2 in the Supplement contains annual estimates from 2016-2020 inclusive as well as estimated population frequencies). We calculated absolute and relative differences to determine the magnitude of changes over time. Relative difference, presented as a percentage, is the absolute difference divided by the prevalence in the referent category (2016) multiplied by 100.

For trend analyses, we ran logistic regression models with survey year treated as a continuous variable and tested for linear trends to assess whether changes over time were statistically significant after controlling for demographic variables. We adjusted trend models for child age (0-5, 6-11, and 12-17 years), sex (male, female), race and ethnicity, and household income (<200% and ≥200% federal poverty level) to control for the possibility that changing demographics among the US child population might be driving observed changes.

Race and ethnicity were self-reported during the survey and subsequently categorized as Hispanic, non-Hispanic Black, non-Hispanic White, or non-Hispanic other or multiple race. We assessed race and ethnicity because of their established association with various indicators of children’s health and health care.

To examine changes in trends that might have occurred with the onset of the COVID-19 pandemic, we produced 3 sets of models: 1 to test trends over the entire 5-year period (2016-2020), 1 to test trends in the 4 years before the pandemic (2016-2019), and 1 to compare prevalence estimates between 2019 and 2020. For estimates that showed no significant changes prepandemic, we conducted sensitivity analyses by pooling data across the 4 years of 2016 to 2019 to increase power and assessed whether results changed when comparing the pooled-data period vs 2020.

Analyses accounted for complex survey sampling design and were weighted to produce estimates that were nationally representative of US children living in noninstitutional settings, using Stata MP version 15 (StataCorp). 21 Statistical significance was assessed using a 2-sided P value threshold of .05. As this was a descriptive, exploratory analysis, no adjustments were made for multiple comparisons. Observations with missing or unknown data were dropped from the analysis. Sex (0.1% missing), race (0.4% missing), and ethnicity (0.5% missing) were imputed using hot-deck imputation, and household income (17.8% missing) was multiply imputed using regression methods. More information is available elsewhere on imputation methods. 22

Between 2016 and 2020, there was a significant decrease in asthma (8.4% [95% CI, 7.9-9.0] to 7.2% [95% CI, 6.7-7.7]; 14% decrease; P  = .03) as well as significant increases in anxiety problems (7.1% [95% CI, 6.6-7.6] to 9.2% [95% CI, 8.6-9.8]; 29% increase; P  < .001) and depression (3.1% [95% CI, 2.9-3.5] to 4.0% [95% CI, 3.6-4.5], 27% increase; P  < .001]) ( Table 1 and Figure 1 ). Increases in anxiety and depression were evident before the onset of the pandemic (2016-2019), with modest but statistically nonsignificant continuations of these trends in 2020. There was a significant increase in behavior or conduct problems between 2019 and 2020 (6.7% [95% CI, 6.1-7.4] to 8.1% [95% CI, 7.5-8.8]; 21% increase; P  = .001). There was also a significant 5-year decrease in the proportion of school-aged children getting at least 60 minutes of daily physical activity (24.2% [95% CI, 23.1-25.3] to 19.8% [95% CI, 18.9-20.8]; 18% decrease; P  < .001), a trend that began before the pandemic and continued in 2020. Prior to the pandemic, there was a significant decrease in the proportion of young children who were read to daily (37.7% [95% CI, 36.1-39.4] to 35.1% [95% CI, 33.1-37.1]; 7% decrease; P  = .01); however, the prevalence increased again in 2020, resulting in no overall change. There were no statistically significant changes over time for the prevalence of headaches or migraines, autism, ADHD, overweight and obesity, decayed teeth and cavities, special health care needs, or adequate sleep.

Between 2016 and 2020, there was a significant increase in the proportion of uninsured children (6.1% [95% CI, 5.5-6.7] to 7.2% [95% CI, 6.6-7.9]; 19% increase; P  = .004) and a significant decrease in the proportion of children with adequate and continuous insurance (69.4% [95% CI, 68.4-70.3] to 67.4% [95% CI, 66.4-68.4]; 3% decrease; P  = .004) ( Table 2 ). Before the pandemic, there was a significant increase in children whose parents had problems paying their medical bills (15.6% [95% CI, 14.8-16.4] to 17.0% [95% CI, 15.9-18.2]; 9% increase; P  = .04); however, in 2020, the prevalence of medical hardship dropped to the lowest rate since 2016 (13.7% [95% CI, 12.9-14.6], a 20% decrease from 2019; P  < .001). Between 2016 and 2020, there was also a significant increase in reports of unmet needs for health care (3.0% [95% CI, 2.6-3.3] to 4.0% [95% CI, 3.5-4.6]; 36% increase; P  = .004); this trend was driven by a 32% increase in unmet needs between 2019 and 2020 ( P  = .007). There was also a significant decrease in the proportion of children with a usual source of sick care (79.7% [95% CI, 78.7-80.6] in 2016 to 74.7% [95% CI, 73.7-75.7] in 2020, 6% decrease; P  < .001), a trend that began prior to 2020 and worsened moderately in 2020 but was not statistically significant.

Receipt of annual preventive medical visits remained stable in the years preceding the pandemic’s onset (82.3% [95% CI, 81.4-83.1] in 2016 to 83.3% [95% CI, 82.3-84.3] in 2019; P  = .14) ( Table 2 and Figure 1 ). However, in 2020, rates of preventive medical visits decreased significantly, to 78.1% (95% CI, 77.1-79.0), resulting in a net 5% decrease between 2016 and 2020 ( P  < .001). In addition, rates of preventive dental visits were stable between 2016 and 2019, but dropped to 74.9% (95% CI, 73.9-75.8) in 2020 from 80.1% (95% CI, 79.0-81.2) in 2019, leading to a net 5% decrease over the past 5 years ( P  < .001). There was a significant increase in developmental screenings among children aged 9 to 35 months between 2016 and 2020 (30.4% [95% CI, 28.0-32.9] to 36.1% [95% CI, 33.2-39.1]; 19% increase; P  < .001). The upward trend in developmental screenings was driven by improvements between 2016 and 2019. There were no statistically significant changes over time with respect to frustration obtaining medical services, use of specialty care, or use of mental health care.

Between 2016 and 2020, there were significant decreases in the proportion of children with parents or caregivers in “excellent or very good” mental health (69.8% [95% CI, 68.9-70.8] to 66.3% [95% CI, 65.3-67.3]; 5% decrease; P  < .001) and whose parents or caregivers reported coping “very well” with the demands of raising children (67.2% [95% CI, 66.3-68.1] to 59.9% [95% CI, 58.8-60.9]; 11% decrease; P  < .001) ( Table 3 and Figure 2 ). Both the trends for decreasing mental health and parental coping began pre-2020; there was a continued decrease in 2020 for both measures, but only the decrease in parental coping was statistically significant.

In the past 5 years, there was a significant increase in the proportion of young children whose parents quit a job, declined a job, or changed jobs because of child care problems (8.3% [95% CI, 7.3-9.3] to 12.6% [95% CI, 11.2-14.1]; 52% increase; P  < .001); this trend was not statistically significant between 2016 and 2019, but rather was driven by a 34% increase between 2019 and 2020 ( P  = .001). There was also a significant decrease in food insufficiency between 2016 and 2020 (33.9% [95% CI, 32.9-34.9] to 28.9% [95% CI, 27.9-29.9]; 15% decrease; P  < .001), including a notable decrease between 2019 and 2020.

There were significant decreases between 2016 and 2020 in the proportion of children who were reported to have experienced parental death during their lifetime (3.3% [95% CI, 3.0-3.7] to 2.8% [95% CI, 2.5-3.2]; 15% decrease; P  = .01) and parental incarceration (8.2% [95% CI, 7.6-8.8] to 6.7% [95% CI, 6.2-7.2]; 18% decrease; P  = .03) in their lifetime. Between 2016 and 2020, there were significant increases in the proportion of children who ever lived with someone with mental illness (7.8% [95% CI, 7.3-8.3] to 8.3% [95% CI, 7.7-8.9]; 6% increase; P  = .002) and who experienced racial or ethnic discrimination (3.7% [95% CI, 3.3-4.1] to 5.4% [95% CI, 4.9-6.0]; 47% increase; P  < .001); trends for both measures were evident before the onset of the pandemic. There were no statistically significant changes over the 5-year period in the prevalence of parent or caregiver physical health and certain lifetime adverse childhood experiences among children (interpersonal violence, neighborhood violence, living with someone with substance use problems).

After pooling the data from 2016 to 2019 and comparing with 2020, results were unchanged for 18 of 22 measures examined (data available on request). The following measures showed no significant changes in the original analysis but did show significant changes in the pooled analysis: asthma (decrease), current uninsurance (increase), parental death (decrease), and parental incarceration (decrease).

Information about recent trends in US children’s health and health care is needed to inform future research, clinical care, policy decision making, and programmatic investments. This analysis provides an opportunity to evaluate the nation’s progress (or lack thereof) in improving the health and well-being of US children and their families, including the first opportunity to use the NSCH to investigate potential effects of the COVID-19 pandemic.

With respect to prepandemic trends, there was a significant increase in diagnosed mental health conditions, specifically a 27% increase in anxiety and a 24% increase in depression, between 2016 and 2019. These findings are consistent with reports from other data sources. 23 - 26 The direction of these trends continued into 2020, representing 5.6 million children with diagnosed anxiety and 2.4 million children diagnosed with depression; although the year-over-year increases were not statistically significant in this analysis, other data sources based on electronic health records and surveillance programs have indicated that the pandemic exacerbated said trends. 27 , 28 In addition, we found a 21% year-over-year uptick in diagnoses of behavior or conduct problems from 2019 to 2020, representing about 5 million children in 2020, consistent with other parent reports that children have been “acting out” more since the start of the pandemic. 29 Despite the increasing mental health needs of children, this study found no significant improvement in receipt of mental health treatment or counseling over the past 5 years; as of 2020, only 80% of children who needed mental health care received any services. Furthermore, we found a steady decline over the past 5 years in parent or caregiver well-being (as reflected by self-reports about mental and emotional health and coping with parenting demands) and an increase in the proportion of children who ever lived with someone with mental health problems. Results suggest that difficulties coping with parenting demands were also exacerbated by the pandemic. These findings mirror other reports of heightened stress among US adults and especially parents, both before and during the COVID-19 pandemic. 30 - 33 Between 2019 and 2020, there was also a 34% increase in the proportion of young children whose parents quit, declined, or changed jobs because of child care problems; child care problems were reported for 13% of young children in 2020, representing more than 2.8 million children. Other federal data have shown that 18% of households with children reported child care disruptions more than 1 year after the onset of the pandemic; among those households, 1 in 4 adults cut their work hours or took unpaid leave to care for children and 1 in 6 left a job or did not look for a job so they could care for children. 14 Taken together, these findings highlight a critical need to support both children and their caregivers to improve families’ mental and emotional well-being and to provide child care options that can ensure families’ economic well-being.

Study findings also confirm previous reports that children’s health care use dropped after the pandemic’s onset. 34 - 37 Specifically, in 2020, there was a 6% year-over-year decrease in preventive medical visits, a 7% decrease in preventive dental visits, and a 32% increase in unmet needs for health care. Although the prevalence of problems paying children’s medical bills had been increasing prior to the pandemic, there was a 20% drop in medical hardship from 2019 to 2020, possibly because families were delaying or were unable to access health care services. Other sources indicate that the most common reasons for missed or delayed preventive visits included limited appointment availability, health care locations being closed, and caregiver concerns about visiting health care professionals. 15 Efforts are needed to help families make up lost ground with respect to forgone health care during the pandemic.

One positive finding pertaining to health services was the increased proportion of young children receiving developmental screenings, which increased 24% prior to the pandemic, consistent with pediatricians’ increased reports of using developmental screening tools between 2002 and 2016. 38 However, we found that the prevalence of developmental screenings in 2019 was only 38%, indicating room for improvement. This study’s parent-reported screening prevalence in 2016 (30%) was about half that of pediatrician reports in the same year (63%), 38 suggesting that parents may not recognize that their child received a screening. Pediatricians may also overestimate the extent to which they conduct discussions of screening results with parents. 39

Despite the many challenges faced by US children and parents or caregivers during the pandemic, results also indicate areas of resilience. For instance, the proportion of children getting adequate sleep remained steady in 2020, and the proportion of young children who were read to every day experienced a 9% uptick (although this was not statistically significant). In addition, household food insufficiency decreased by 8% between 2019 and 2020, and none of the adverse childhood experiences we examined showed a significant worsening after the onset of the pandemic.

There are several study limitations to consider. First, the data do not allow causal inferences about the effects of the COVID-19 pandemic on children’s health and well-being. The 2020 NSCH was fielded several months after the pandemic began (June 2020-January 2021) and some survey items (eg, health care utilization questions) had a 12-month look-back period going as far back as June 2019. As a result, estimates produced from the 2020 NSCH may not fully capture the dynamic effect of the pandemic on children and families. Cautious interpretation of the 2020 estimates is warranted, and additional years of data are needed to determine whether 2020 was truly a turning point for certain trends and how long the indirect effects of the pandemic may last. There may also be nonresponse bias if survey respondents were systematically different from nonresponders. Nonresponse bias analyses are conducted every year for the NSCH to identify potential sources of bias and assess the degree to which survey weight adjustments reduce any identified bias. These analyses have found no strong or consistent evidence of nonresponse bias after survey weights are applied. 40 Overall trends reported here may mask different patterns within subpopulations. Additional analyses are planned to examine the extent to which disparities between sociodemographic groups of interest have changed over the past 5 years.

More work remains to achieve the nation’s goals to improve children’s health and well-being. 9 The findings of this study can be used to inform programmatic investments and priorities, and support stakeholders in making data-informed decisions. For instance, the Maternal and Child Health Bureau of the Health Resources and Services Administration, the federal agency that sponsors the NSCH, also administers several programs that address some of the significant health-related challenges highlighted here. The Pediatric Mental Health Care Access Program expands access to pediatric mental health care by integrating telehealth services into pediatric practices in states, territories, and tribal regions to support primary care clinicians to diagnose, treat, and refer children and youth for mental health conditions. The Maternal, Infant, and Early Childhood Home Visiting Program addresses parental stress and promotes family well-being by supporting people during pregnancy and the early childhood years; health, social service, and child development resources and skill development are offered through regular home visits to address families’ wide-ranging needs. The Bright Futures Program disseminates age-specific, evidence-based guidelines for comprehensive well-child visits, including guidelines on developmental screening and surveillance; behavioral, social, and emotional assessment; and screening for maternal postpartum depression. In response to the decline in children’s preventive care during the pandemic, the Maternal and Child Health Bureau launched the Promoting Pediatric Primary Prevention (P4) Challenge to accelerate well-child visits and immunizations in primary care settings through such innovative approaches as text-message reminders, peer-to-peer social media campaigns, mobile and pop-up clinics, and integration of primary care services into dental care.

Study findings point to several areas of concern, including troubling trends that were evident before the pandemic and new challenges that arose in 2020. More analyses are needed to elucidate varying patterns within subpopulations of interest. This study adds to the growing literature pointing to an exacerbation of challenges brought on by the COVID-19 pandemic, highlighting the urgent need to ensure children’s access to timely health care services, promote healthy behaviors, and support parents to strengthen family well-being.

Accepted for Publication: December 9, 2021.

Published Online: March 14, 2022. doi:10.1001/jamapediatrics.2022.0056

Corresponding Author: Lydie A. Lebrun-Harris, PhD, MPH, Health Resources and Services Administration, Maternal and Child Health Bureau, Office of Epidemiology and Research, 5600 Fishers Ln, Rockville, MD 20857 ( [email protected] ).

Correction: This article was corrected on April 4, 2022, to change the article to open access status and corrected on January 9, 2023, for a coding error that caused shifts in the single-year estimates for preventive medical visits.

Open Access: This is an open access article distributed under the terms of the CC-BY License . © 2022 Lebrun-Harris LA et al. JAMA Pediatrics .

Author Contributions: Dr Lebrun-Harris had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: All authors.

Acquisition, analysis, or interpretation of data: Lebrun-Harris, Kogan.

Drafting of the manuscript: Lebrun-Harris, Ghandour.

Critical revision of the manuscript for important intellectual content: Lebrun-Harris, Kogan, Warren.

Statistical analysis: Lebrun-Harris, Ghandour.

Administrative, technical, or material support: Warren.

Supervision: Kogan.

Conflict of Interest Disclosures: None reported.

Disclaimer: The views expressed in this article are those of the authors and do not necessarily reflect the official policies of the US Department of Health and Human Services (HHS) or the Health Resources and Services Administration (HRSA), nor does mention of HHS or HRSA imply endorsement by the US government.

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What child health-related data does The DHS Program collect?

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• Growth Monitoring: The SPA includes weighing of children and plotting the weight against standards to identify nutritional problems.
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Photo credit: © 2007 Leah Gilbert, Courtesy of Photoshare. An Inca child in the Andes Mountains of Peru.

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• Published: 07 December 2018

Parent, child and public involvement in child health research: core value not just an optional extra

• Eleanor J Molloy 1 , 2 , 3 , 4 ,
• Silke Mader 5 ,
• Neena Modi 6 &
• Chris Gale 6  

Pediatric Research volume  85 ,  pages 2–3 ( 2019 ) Cite this article

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The rights of the child

Healthcare professionals are advocates for families and children but have no consistent framework research involvement. The Convention on the Rights of the Child (CRC) enshrined ‘The right to an opinion’ stating that all children have the right to express their views. They also have the right to be informed and give their opinion about the world around them 1 . Here we discuss Patient-Public Involvement (PPI) in research and why it is important and provide a framework to assist healthcare professionals.

What is PPI

Patients’ and public involvement (PPI) ( https://involvement-mapping.patientfocusedmedicine.org ) means involving anyone not professionally interested or experienced in health and care in in research. Public involvement, PI, is another term often used which describes initiatives to give lay people an effective, active role in health and care research. PPI and PI have similar goals: to develop research that addresses patients’ and the public’s needs, and thereby improve the success, cost-effectiveness and impact of research. Furthermore, close involvement of patients and the public can facilitate rapid dissemination and implementation of research findings.

Patient and public (and parent) involvement in medical research differs considerably between countries, as well as between patient groups, medical specialties and institutions. The use of different terminology and definitions in different countries has contributed to this variation. 2 Similar types of patient and family involvement are termed engagement in North America and participation in the Netherlands whereas the UK National institute for Health Research (NIHR) divides different activities into engagement, involvement and participation depending on their nature ( https://www.nihr.ac.uk/patients-and-public/ ). Involving children research adds another layer of complexity as terminology needs to include infants, children, teenagers and young adults as well as their families.

Organisations and initiatives such as iCAn (International Children Advisory Network: a global consortium of Youth Advisory Groups) and NIHR Generation R are dedicated to providing a voice for children and families in paediatric medicine and research, and provide resources, advice and examples effective PPI. 3

Why is it essential…what is the evidence

Advocacy and patient participation are becoming increasingly integrated in child health research and practice as healthcare moves to embrace family-centred models of care. This, and the move towards meaningful PPI in research more generally, has highlighted the high degree to which such children and their families would like to be involved in future research. During the creation of the Royal College of Paediatrics and Child Health (RCPCH) research charter, children and their families 4 clearly indicated that they wanted to participate in the planning, design and implementation of research projects. Furthermore, there is good evidence that research that integrates meaningful PPI—research performed with or by the research participants rather than on them—leads to tangible benefits for researchers ranging from better trial recruitment and retention ( http://www.jla.nihr.ac.uk/about-the-james-lind-alliance/ ) to enhanced research impact.

How to do this?

Developing partnership between families, children, the public and healthcare workers is essential across the research process, from research priority setting, clinical trial design, ethics, medical publishing, medical conferences, through to policy.

There are paediatric and neonatal examples of high quality PPI that cover the different stages of the research cycle. Following a framework developed by the James Lind Alliance ( http://www.comet-initiative.org/ ), parents, patients, and the public have been involved in identifying priorities to be addressed in future preterm birth research. In relation to trial design, the Core Outcome Measures in Effectiveness Trials (COMET) Initiative has developed a comprehensive handbook to guide researchers seeking to develop core outcome sets for use across clinical trials, a key component of which is parent and patient involvement. 5 , 6 Research funders are increasingly supporting these initiatives, for example the primary funder of medical research in the United Kingdom, the NIHR, mandates reference to both core outcome sets and James Lind Alliance priority setting partnerships where they exist, when funding clinical trials.

Meaningful parent, patient and public involvement is increasingly required when publishing research. Medical journals are increasingly modifying their editorial policies to recognise the importance of PPI—the British Medical Journal’s campaign for patient-partnership is an excellent example of collaboration in this area. 6 In Paediatric Research we have started this journey by introducing parent perspectives to complement papers published in the journal. Another suggestion is the inclusion of a lay summary in all manuscripts to improve accessibility. Medical conferences are also changing to recognise and value PPI such as the Cochrane colloquium ( https://colloquium.cochrane.org/patients-included ) to ensure there is a patient in the programme, on the stage and in the audience. The European Foundation for the Care of Newborn Infants has developed a guide for parents on research which provides guidance on meaningful engagement of families in research projects 7

Financial and educational resources are needed to allow researchers, families and children to engage in collaborative research. Funding mechanism exist from the NIHR and Wellcome Trust in the UK as well as Patient-Centered Outcomes Research Institute (PCORI; https://www.pcori.org/ ) in the USA which provide support to researchers and families engaging in PPI research. Resources such as guidance notes, and practical advice on costing and publication libraries have been established by the NIHR the INVOLVE group( http://www.invo.org.uk/ ).

As paediatricians, neonatologists and researchers in child health we work closely with parents, patients and families routinely and continuously to provide the optimal care for all children, and are privileged to be allowed fulfil this role. High quality evidence suggests that applying this approach to academic paediatrics and neonatology leads to better, more applicable and impactful research. The benefits to children and their families from participation in research projects may be augmented by involvement in all aspects of the project from its inception to publication and implementation, and be a source of empowerment.

United Nations General Assembly Convention on the Rights of the Child, 20 November 1989. Annu. Rev. Popul. Law 16 , 485–501 (1989).

Bate J., et al Public and patient involvement in paediatric research Archives of Disease in Childhood—Education and Practice. https://doi.org/10.1136/archdischild-2015-309500

Hunter, L. et al. Advancing child health research in the UK: the Royal College of Paediatrics and Child Health Infants’ Children’s and Young People’s Research Charter. Arch. Dis. Child. 102 , 299–300 (2017).

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Molloy, E. J., . & Gale, C. & Marsh, M. & Bearer, C. F. & Devane, D. & Modi, N. Developing core outcome set for women’s, newborn, and child health: the CROWN Initiative. Pediatr Res 84 , 316–317 (2018).

Richards, T., . & Godlee, F. The BMJ’s own patient journey. BMJ 348 , g3726 (2014).

EFCNI, Position Paper: Involvement of parent representatives in neonatal research, 2017; https://www.efcni.org/wp-content/…/04/2017_10_26_Parents_In_Research_web.pdf

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Paediatrics, Academic Centre, Tallaght University Hospital, Trinity College, University of Dublin, Dublin, Ireland

Eleanor J Molloy

Trinity Translational Medicine Institute, St James’ Hospital, Dublin, Ireland

Neonatology, Coombe Women and Infants’ University Hospital, Dublin, Ireland

Neonatology, Our Lady’s Children’s Hospital, Crumlin, Dublin, Ireland

European Foundation for the Care of Newborn Infants, Munich, Germany

Silke Mader

Section of Neonatal Medicine, Department of Medicine, Imperial College London, Chelsea and Westminster campus, London, UK

Neena Modi & Chris Gale

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Molloy, E.J., Mader, S., Modi, N. et al. Parent, child and public involvement in child health research: core value not just an optional extra. Pediatr Res 85 , 2–3 (2019). https://doi.org/10.1038/s41390-018-0245-z

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Published : 07 December 2018

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DOI : https://doi.org/10.1038/s41390-018-0245-z

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Priority topics for child and family health research in community-based paediatric health care according to caregivers and health care professionals

Affiliations.

• 1 Department of Pediatrics, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada.
• 2 School of Public Health, University of Alberta, Edmonton, Alberta, Canada.
• 3 Northeast Community Health Centre, Edmonton, Alberta, Canada.
• 4 Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada.
• 5 Li Ka Shing Knowledge Institute, Unity Health Toronto, Toronto, Ontario, Canada.
• PMID: 37205136
• PMCID: PMC10186094
• DOI: 10.1093/pch/pxac106

Background: Patient-oriented research (POR) aligns research with stakeholders' priorities to improve health services and outcomes. Community-based health care settings offer an opportunity to engage stakeholders to determine the most important research topics to them. Our objectives were to identify unanswered questions that stakeholders had regarding any aspect of child and family health and prioritize their 'top 10' questions.

Methods: We followed the James Lind Alliance (JLA) priority setting methodology in partnership with stakeholders from the Northeast Community Health Centre (NECHC; Edmonton, Canada). We partnered with stakeholders (five caregivers, five health care professionals [HCPs]) to create a steering committee. Stakeholders were surveyed in two rounds (n = 125 per survey) to gather and rank-order unanswered questions regarding child and family health. A final priority setting workshop was held to finalize the 'top 10' list.

Results: Our initial survey generated 1,265 submissions from 100 caregivers and 25 HCPs. Out of scope submissions were removed and similar questions were combined to create a master list of questions (n = 389). Only unanswered questions advanced (n = 108) and were rank-ordered through a second survey by 100 caregivers and 25 HCPs. Stakeholders (n = 12) gathered for the final workshop to discuss and finalize the 'top 10' list. Priority questions included a range of topics, including mental health, screen time, COVID-19, and behaviour.

Conclusion: Our stakeholders prioritized diverse questions within our 'top 10' list; questions regarding mental health were the most common. Future patient-oriented research at this site will be guided by priorities that were most important to caregivers and HCPs.

Keywords: Child health; Family health; Patient-oriented research; Priority setting; Stakeholder engagement.

© The Author(s) 2023. Published by Oxford University Press on behalf of the Canadian Paediatric Society. All rights reserved. For permissions, please e-mail: [email protected].

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Conflict of interest statement

Catherine Birken declared the Walmart Canada Regional Community Grant on addressing food insecurity in children admitted to hospital (2018-2020). There are no other disclosures. All authors have submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. Conflicts that the editors consider relevant to the content of the manuscript have been disclosed.

Flowchart of modified James Lind…

Flowchart of modified James Lind Alliance priority setting methodology, results and timeline.

Word cloud of themes/topics from…

Word cloud of themes/topics from initial survey submissions (n = 1,265 submissions).

The ‘top 10’ priority questions…

The ‘top 10’ priority questions for child and family health research.

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To conduct an expert-led process for identifying research priorities for eight areas of adolescent health in low- and middle-income countries. Specific adolescent health areas included communicable diseases prevention and management, injuries and violence, mental health, noncommunicable diseases management, nutrition, physical activity, substance use, and health policy.

We used a modified version of the Child Health and Nutrition Research Initiative methodology for reaching consensus on research priorities. In a three phase process, we (1) identified research and program experts with wide-ranging backgrounds and experiences from all geographic regions through systematic searches and key informants; (2) invited these experts to propose research questions related to descriptive epidemiology, interventions (discovery, development/testing, and delivery/implementation), and health policy/systems; and (3) asked the experts to prioritize the research questions based on five criteria: clarity, answerability, importance or impact, implementation, and equity.

A total of 142 experts submitted 512 questions which were edited and reduced to 303 for scoring. Overall, the types of the top 10 research questions in each of the eight health areas included descriptive epidemiology (26%), interventions: discovery (11%), development/testing (25%), delivery (33%), and policy, health and social systems (5%). Across health areas, the top questions highlighted integration of health services, vulnerable populations, and different health platforms (such as primary care, schools, families/parents, and interactive media).

Conclusions

Priority questions have been identified for research in eight key areas of adolescent health in low- and middle-income countries. These expert-generated questions may be used by donors, program managers, and researchers to prioritize and stimulate research in adolescent health.

Implications and Contribution

The Department of Maternal, Newborn, Child, and Adolescent Health of the World Health Organization (WHO) conducted an exercise to establish global research priorities for adolescent health in low- and middle-income countries through 2030, building on earlier work that proposed research priorities in adolescent sexual and reproductive health.

In 2014, there were 1.2 billion adolescents aged 10–19 years old, comprising 16.4% of the world's population. Adolescent mortality was estimated at 1.3 million in 2012, with the leading global causes of death being road injury, human immunodeficiency virus (HIV), suicide, lower respiratory infections, and interpersonal violence [1] . The great majority of the world's adolescents live in low- and middle-income countries (LMICs) [1] , and 97% of deaths among young people occur in LMICs [2] . In the past 50 years, reductions in early child mortality have been greater than declines in adolescent mortality [3] .

In terms of the global burden of diseases, the top three causes of disability-adjusted life years lost among adolescents are unipolar depressive disorders, road injury, and iron-deficiency anemia [1] . However, mortality and disability-adjusted life year data will underestimate the potential disease burden among adolescents because they do not reflect conditions and behaviors that can lead to future disability and mortality later in life, such as tobacco use and dependence or physical inactivity [4] . Health-related risk behaviors adopted or consolidated during adolescence may not always affect the adolescent's health during the second decade of life but will have a substantial effect later in life, and some will affect the health of future generations [4] , [5] .

Improving the health of adolescents in LMICs will be essential for the world to achieve the United Nations Sustainable Development goals [6] , and the specific targets and goals included in the United Nations Secretary General's Global Strategy for Women's, Children's and Adolescents' Health [7] . Although there has been an increased call for research on the health and wellbeing of adolescents and young people to guide these and other global and national initiatives, research from LMICs is still limited [1] , [8] .

Here, we report the findings from an exercise to identify research priorities for eight areas of adolescent health in LMICs with the aim of stimulating research on the priority questions identified. The specific areas of adolescent health selected for inclusion were communicable diseases prevention and management (including diarrhea, parasites, hepatitis, malaria, meningitis, tuberculosis, influenza, pertussis, pneumonia, and others), injuries and violence, mental health, noncommunicable diseases management (including asthma, diabetes, cancer, hypertension, heart disease, and others), nutrition, physical activity, substance use, and adolescent health: policy, health and social systems. Of note, adolescent sexual and reproductive health and related topics were not included, as they had been the subject a recent similar research prioritization exercise [9] .

The Child Health and Nutrition Research Initiative (CHNRI) developed a method for ranking the relative importance of competing research options to help decision makers to effectively allocate limited resources to reduce morbidity and mortality [10] . The CHNRI approach has previously been applied to more than 50 health areas [11] , [12] , [13] , [14] , [15] , including adolescent sexual and reproductive health [9] .

We implemented a modified version of the CHNRI priority setting method in three phases. In Phase 1, we identified research and program experts through systematic searches of published and gray literature, members of journal editorial boards, and through interviews with key informants at WHO, and invited them to participate in the exercise. In Phase 2, we asked the experts who agreed to participate to propose research questions related to descriptive epidemiology, interventions, and health and social systems research. In Phase 3, we asked the same experts to prioritize the research questions generated in Phase 2 using a scoring scheme based on five criteria.

Phase 1: Identification of Research and Program Experts

Experts were identified through journal publications, membership of journal editorial boards, from lists of participants at WHO meetings and consultations, and by nominations from relevant WHO departments. For journal publications, we identified experts in each health area through a systematic search of PubMed and Web of Science databases from 2005 to 2015. To be included on this preliminary list, authors had to have published at least two relevant articles within a specific health area that explicitly covered adolescents (ages 10–19 years) in LMICs during the 2005–2015 period. If more than 20 experts met these criteria, then the number was reduced to a maximum of 20, based on number of publications, relevance of the titles of the articles, and the position of authorship, with discrepancies resolved through discussion by D.R. and J.F. This resulted in 116 experts.

We searched for peer-reviewed journals related to adolescent health in all six official United Nations languages. Members of the editorial boards of the two peer-reviewed journals related to adolescent health with the highest impact factor ( Journal of Adolescent Health —2.75 and Journal of Research on Adolescence —2.51) based on Web of Science Journal Citation Reports for 2013 [16] were included in the adolescent health: policy, health and social systems area. This identified an additional 69 experts.

Since the experts identified through the systematic PubMed and Web of Science search were likely to mainly be researchers, we also identified participants at WHO meetings and consultations held in 2010–2015 and that were relevant to the eight adolescent health areas through reports that were available on the WHO website and the WHO Index Medicus, a database focused on health literature produced by and within LMICs from all regions. Such meetings usually include program implementers and policymakers and researchers. The meetings included several that had participation by young persons themselves. We also invited representatives of the WHO departments relevant to each health area to review the lists and nominate any additional key experts in their respective fields. Overall, this resulted in 265 additional experts.

Combining the list of experts resulted in a total of 450 different individuals ( Table 1 ). All these 450 experts were sent an invitation to participate in the research prioritization process, and 217 (48%) agreed to participate.

Table 1

The number of experts identified and who participated in the different stages of the research priorities exercise

NCDs = Noncommunicable diseases; WHO = World Health Organization; WOS = Web of Science.

Phase 2: Identification of Research Questions

The experts identified in Phase 1 were divided into groups based on their expertise in the eight adolescent health areas. Each expert was asked to propose research questions of the greatest priority for adolescent health within their health area related to descriptive epidemiology, interventions, and health and social systems research:

• 1. Descriptive epidemiology (1 question): descriptive studies, designed to measure burden of disease, explore risk, and protective factors.
• A. Discovery research (1 question): designed to create new interventions.
• B. Development and testing research (1 question): development, testing, and evaluation of interventions.
• C. Implementation/Delivery research (1 question): designed to improve the effectiveness, deliverability, affordability, sustainability, and scale-up of existing interventions.
• 3. Health policy/Health and social systems research (1 question): questions related to the overall health and social systems that affect adolescents not necessarily specific to any one health area.

Questions were submitted via a survey tool using SurveyMonkey (Palo Alto). The 512 submitted questions ( Appendix A ) were synthesized by removing redundancies and questions not relevant to adolescent health, as well as repositioning questions that belonged in different health areas. Some questions were rephrased in an attempt to improve clarity. This resulted in 303 questions that were included in the final scoring ( Appendix B ).

Phase 3: Prioritization of Research Questions

The same 217 experts were asked to score the final list of research questions generated in Phase 2 in their health area of expertise and in the adolescent health: policy, health and social systems area. Experts in the adolescent health: policy, health and social systems area were asked to score one additional health area of their choosing.

Experts were asked to score questions against five specific criteria:

• ○ Clarity : is the question well framed and are its endpoints clear?
• ○ Answerability : can the question generate important new knowledge in an ethical way?
• ○ Importance : would the question identify problems that may result in an important intervention?
• ○ Implementation : how likely will the question contribute to tailoring of interventions to targeting of specific populations?
• ○ Equity : would the answer to this question help to identify inequities (e.g., in disease burden, access to and/or utilization of services)?
• ○ Clarity : is the question well framed and are its end-points clear?
• ○ Impact (Discovery) : would the answer to this question be likely to result in the identification of an intervention, which, if proved effective, would be very important for the improvement of adolescent health and/or development?
• ○ Impact (Development/Testing and Implementation/Delivery) : would the answer to this question, if positive, result in an effective intervention?
• ○ Implementation : would the answer to this question, if positive, result in an intervention or a strategy with a strong likelihood of being affordable and sustainable in most LMICs?
• ○ Importance : how likely is this question to change adolescent health?
• ○ Implementation : what is the feasibility of this systems change?

Experts were asked to score each question for each of the criteria based on the standard CHNRI scoring system: yes, no, or undecided.

In October 2015, 15 external experts joined the authors and other WHO staff in a meeting at which the methods and preliminary findings were discussed before they were finalized.

Data Analysis

All answers were converted to a score. A “yes” scored 100; “undecided” 50; and “no” 0 points. Rankings were based on the total Research Priority Score (RPS), which was computed as the mean of the scores for the different criteria, weighted according to published guidelines from CHNRI stakeholders [17] and adjusted to a 100-point scale, according to the formula:

RPS = [(answerability × .86) + (impact × 1.56) + (deliverability × .77) + (equity × .81)]/4. Although clarity has been used as a criterion in previous CHNRI exercises [9] , its weight has not been validated by CHNRI methodological guidelines so it was not included in the final RPS [17] . In addition, the Average Expert Agreement (AEA) scores are reported, which represent the average proportion of scorers that agreed on responses for each of the five criteria asked. This was computed as:

Characteristics of the 142 experts who submitted questions are shown in Table 2 . Over half were female (57.0%) and were employed in academic institutions (63.1%). There were fewer representatives from governments and donor organizations. Most experts had a postgraduate degree (88.7%). About half of the experts described their primary role as a researcher, whereas about a fifth were program managers and a 10th were clinical health practitioners or policy makers. The experts represented 62 countries from North America (28.2%), South America (10.6%), Europe (21.1%), Africa (14.8%), Asia (13.4%), and Oceania (12.0%). The number of experts who were identified and who participated in each of the stages of the exercise is shown by health area in Table 1 . The total number of experts who were approached was 450; the number varied by “health area” from 44 (substance use) to 77 (adolescent health: policy, health and social systems). From these, a total of 217 agreed to participate, 142 submitted questions, and 130 scored the questions.

Table 2

Characteristics of experts (N = 142) a

Appendix C presents the full list of 303 questions that the experts were asked to score, the mean scores of each question and of each health area. The top 10–ranked research questions in each of the eight health areas are shown in Table 3 . The total RPS for the top 10 questions in the eight health areas ranged from 73 to 100 out of a possible 100. The AEA score for the top 10 questions (as ranked by total RPS) ranged from 61 to 98 out of a possible 100 in the eight health areas.

Table 3

Top 10 research questions according to their Research Priority Score, by health area

ARV = Antiretroviral therapy; DALYs = disability-adjusted life years; HIC = high-income country; HIV = human immunodeficiency virus; LIC = low-income country; LMIC = lower-middle income country; LMICs = low- and middle-income countries; SES = socioeconomic status; TB = tuberculosis; UMIC = upper middle-income countries; USD = United States Dollar.

For the top 10 questions in each health area, the overall mean RPS was 87, and the mean AEA was 79. In terms of scoring criteria, answerability had the highest mean score (90), followed by impact (88) and clarity (88). Equity was the criterion that had the lowest mean score (81). The types of research represented in the top 10 questions for the eight health areas were descriptive epidemiology (26%), interventions: discovery (11%), development/testing (25%), delivery (33%), and policy, health and social systems (5%; Appendix D ). The top 10–ranked research questions are shown by research type in Appendix E .

Across health areas, the top-ranking research questions highlighted various themes reflecting the diversity of issues affecting adolescent health. Several questions featured delivery of interventions via different platforms, such as schools (N = 14), primary care (N = 5), families/parents (N = 5), and interactive media (i.e., novel communication technologies, mobile phones, internet, social media; N = 4). Other questions addressed integration of health services, for instance between physical health, mental health, and reproductive health services. Finally, key subpopulations of vulnerable adolescents were identified in top-ranked research questions including young sex workers, injecting drug users, refugees, and out-of-school youth. Additional themes are discussed by specific health area.

Discussion by Health Area

Communicable diseases prevention and management.

The top 10 communicable diseases prevention and management questions were dominated by tuberculosis (TB; 9 of 10), with six of nine of the TB questions also related to HIV co-infection or linking TB and HIV services ( Table 3 ). Four of the questions were related to adherence, and three were related to retention in care. The only non-TB question that was in the top 10 communicable diseases questions was related to diarrhea and lower respiratory tract infections, whereas questions related to malaria or neglected tropical diseases were absent. This may have reflected the interests of the experts who proposed questions and scored them in this health area. For instance, the systematic searches of the literature for experts in malaria or neglected tropical diseases and adolescence yielded far fewer results than searches for experts in TB or HIV/AIDS and adolescence. Adolescence has been identified as a critical time in HIV and TB treatment and care, with recent studies demonstrating that HIV has risen to become the second-highest cause of adolescent mortality globally [1] . Nonetheless, research in malaria and neglected tropical diseases among adolescents may be a crucial under-represented research area despite the fact that they were not featured in this priorities exercise.

Injuries and violence

The top-ranked injuries and violence question was related to barriers and facilitators of motorcycle helmet legislation. Other specific issues addressed in the top 10 questions related to drowning, bullying, partner violence, sexual violence, and burn injuries. Three of the questions related to applying or combining interventions in one area to other areas (for instance, combining brief alcohol interventions with brief violence reduction interventions or using strategies against bullying to prevent partner violence or sexual violence).

Although one question related to gender-based violence was submitted, it did not rank in the top 10 injuries and violence questions in this exercise. Of note, the previous research priorities exercise on adolescent sexual and reproductive health included an entire area on gender-based violence. Eighteen experts on gender-based violence participated, and five priority questions were featured in the published results for that exercise. Some of these questions addressed underlying issues for gender-based violence. For instance, the top-ranked question was, “how do programs that aim to keep girls in school longer through measures such as conditional cash transfers affect the prevalence of gender-based violence?”

In addition, effective strategies for a responsive health system, empathetic provider behavior, and having a single point of access to multiple different types of care may serve to promote focus on improving service delivery for sexual violence, burns, and other injuries.

Mental health

The top-ranked mental health question addressed the cost-effectiveness of a package of interventions for the promotion of mental health. A question about the effectiveness of parenting programs in the prevention of mental health disorders also featured in the top 10. Three questions were related to integration of management of mental health with primary care or reproductive health care services and other strategies such as adolescent friendly health services. The third-ranked mental health question focused on suicide and self-harm behaviors in adolescent girls. Recent global reports have estimated that suicide surpassed maternal mortality as the leading cause of death among older adolescent (15–19 years old) females globally [1] . However, although ranked third among older adolescent (15–19 years old) males, the actual mortality rates were estimated to be almost identical (11.73/100,000/year in females vs. 11.72/100,000/year in males) in 2012 [1] . Research on self-harm and suicide in adolescent males also remains an under-researched area.

Noncommunicable diseases management

The top-ranked question on noncommunicable diseases (NCDs) management related to developing a low-cost rapid antigen test for streptococcal pharyngitis for the prevention of rheumatic heart disease. This was the only intervention: discovery question that ranked number one in a health area. In addition to rheumatic heart disease, research on other forms of heart conditions may be important during adolescence. For instance, for children born with congenital heart diseases who survive through childhood, loss to follow-up and transitions to adult medical care remain continuing health challenges. Furthermore, acquired heart-related conditions such as hypertension, high cholesterol, and coronary heart disease may begin to develop in adolescence and are an emerging research area. Four of the 10 top-ranked questions were related to diabetes, whereas other specific diseases included rheumatic heart disease and sickle cell disease. Although no questions related to cancers affecting adolescents featured in this exercise, this remains an important area of research in LMICs [18] .

Two of the top 10 questions were related to applying existing interventions in one population group to another, for instance applying NCDs management interventions in adults to adolescents or applying NCDs management interventions in high-income settings to low-income settings. Of note, the NCDs management section did not include NCDs prevention because many of these preventive behaviors may be covered by the substance use, nutrition or physical activities areas. However, there are other areas of behaviors including sleep patterns, increased screen time with electronics and social media, social pressures, and stress related to studies, work, or earnings that may contribute to the development of NCDs and other health problems.

The top-ranked nutrition question related to the causes of adolescent anemia and how the causes vary by geographical region. Four of the top five nutrition questions were descriptive epidemiology research questions. Two of the 10 top-ranked questions related to the relationship between overnutrition and undernutrition; three related to differences in nutritional risk factors or problems by region, country, or socio-economic status; and two related to nutritional status or support for pregnant adolescent girls.

Physical activity

Identifying variables that predicted physical activity patterns among adolescents in LMIC was the top-scoring physical activity question. Five of the 10 top-ranked questions related to schooling or school-based physical activity interventions, whereas two related to scaling up physical activity interventions. Overall, most physical activity questions related to interventions, and particularly, their development/testing or implementation/delivery.

Substance use

Three of the top 10 research questions in this health area were intervention: discovery questions, more than in any other health area. The top-ranked question on substance use was related to the most acceptable prevention and treatment services to adolescents. Two questions specifically addressed alcohol and tobacco, respectively. Three of the questions were related to community-based, parent-based, or peer-based interventions.

Adolescent health: policy, health and social systems

The top-ranked question for adolescent health: policy, health and social systems related to platforms to reach the most vulnerable adolescents. To reach the most vulnerable adolescents, research on their health status and needs may also be necessary. Three of the top questions related to primary care, including effectiveness of different models and coverage, and three related to information and communication technology, whether mobile health interventions, the internet, or social media.

General Discussion

Priority questions have been identified for research in eight key areas of adolescent health in LMICs through 2030, extending earlier work that proposed research priorities in adolescent sexual and reproductive health. Using a modified version of the priority setting method developed by the CHNRI, we received input from 142 experts who generated 512 research questions. These expert-generated questions may be used by donors, program managers, and researchers to stimulate and develop research in adolescent health.

A limitation of the exercise is possible nonresponse bias given that not all experts agreed to participate in the exercise (217/450 = 48%) and not all those who agreed to participate actually did so. Only 142/217 (65%) submitted questions and 130/217 (60%) scored questions. This was despite efforts to encourage responses from all. Selection bias may also affect results, as a majority of respondents were researchers from academic institutions, with less representation from program implementers, policy makers, and funders. This potential bias may reflect the lack of questions on estimating numbers for harmful practices among adolescents. Although equity had the lowest overall average score relative to the other criteria among the top questions, the mean was still 80/100. This value was consistent with previous research priority exercises with mean equity scores 84–86 [12] , [13] , [19] . The creation of eight health areas, which were based on burden of adolescent mortality and morbidity as well as a life course approach to health, inevitably leads to some degree of merging and separation of topics. Furthermore, some specific disease areas may have stronger representation than others based on identified experts and their response rates, despite an effort to include a breadth of expertise by topic. The use of PubMed and Web of Science databases may have identified experts who tended to publish in English language scholarly journals although we searched for publications and experts in all languages and from all regions using the WHO website and WHO Index Medicus, a database focused on health literature produced by and within LMICs.

Furthermore, some of the questions that were submitted spanned two or more types of research question (e.g., both development and delivery types of intervention question) but, for ease of scoring and analysis, were categorized as the category that they were submitted in.

Strengths of the exercise included identification of a large number (450) of experts in adolescent health spanning a diverse range of health areas. The CHNRI methodology is a systematic and transparent process that has become the most common methodology for identifying research priorities since 2001 [20] . It uses independent scoring by experts, avoiding situations where the most vocal or opinionated individuals affect group decisions or priorities [20] . The range of AEA in this exercise (61–98) was consistent with, or higher than, previous research priority exercises, such as for preterm birth (62–83) [13] , childhood pneumonia (64–76) [19] , and newborn health and prevention of stillbirths (62–77) [12] . Although questions were organized in vertical health areas, during the analysis questions were also classified horizontally by delivery platforms (i.e., primary care, schools, families/parents, and interactive media). Future research may consider qualitative methodology exploring themes of top questions across all adolescent health areas (including questions from the adolescent sexual and reproductive health priorities exercise).

Adolescent health is receiving increasing attention globally. For example, the updated United Nations' Global Strategy for Women's, Children's, and Adolescents' Health 2016–2030 features adolescents for the first time, and the emphasis on going beyond “survive” to “thrive” and “transform” will greatly increase the focus on adolescent health and development [7] . Furthermore, although only one of the 17 Sustainable Development Goals is specific to health, all 17 will directly or indirectly affect adolescent health [6] . Given the need for evidence-based policies and programs to improve adolescent health as part of these new global initiatives, priority questions for research in eight key areas of adolescent health in LMICs have been identified using a transparent process that included experts from multiple disciplines, types of institutions, and countries. These expert-generated questions may be used by donors, program managers, and researchers to stimulate and develop research in adolescent health.

Acknowledgments

The authors thank the 142 experts who actively participated in the exercise by submitting and/or scoring questions; the participants at the WHO Consultation on Adolescent Health Research Priorities who included Drs. Sulafa Ali, Margit Averdjik, Anne Buvé, Bruce Dick, Aoife Doyle, Adesegun Fatusi, Rashida Ferrand, Gwyn Hainsworth, Daniel Hale, Mark Jordans, Ana Menezes, Mahmood Nazar Mohamed, Vikram Patel, Daniel Tobon Garcia, and Daniel Wight; WHO colleagues including Drs. Annabel Baddeley, Valentina Baltag, Paul Bloem, Raschida Bouhouch, Alexander Manu, Nigel Rollins, Chiara Servili; and Claire Ory-Scharer and Margaret Kigundu for administrative support. The authors particularly thank Drs. Sachiyo Yoshida, Michelle Hindin, and Rajiv Bahl for advice related to CHNRI methodology, Joya Banerjee and Jill Kowalchuk for help with the systematic searches, and Tomas Allen for advice on electronic literature database searches.

Conflicts of Interest: The authors have no conflicts of interest or financial disclosures to report.

Disclaimer: The views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of WHO.

Supplementary data related to this article can be found at http://dx.doi.org/10.1016/j.jadohealth.2016.03.016 .

Funding Sources

Partial funding for this exercise was provided by the US Agency for International Development and the Mary Duke Biddle Clinical Scholars Program, Stanford University (JMN).

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WHO develops guidelines on a broad array of clinical, public health, health system, health promotion and implementation strategies. These interventions are often highly context-specific, with multiple factors that directly and indirectly impact the health and societal outcomes, and as part of these strategies, to identify key research priorities that could accelerate improvement in maternal and perinatal health, newborn, and adolescent health. These methods will assist policy makers, donors, stakeholders in understanding the potential of research avenues to contribute to reducing the burden of disease and disability. Improving maternal health is considered a crucial element to combat poverty and underdevelopment on a global scale to  reducing maternal newborn mortality and achieving universal access to reproductive health services. WHO and partners have set new research priorities on newborns and stillbirth with a focus not only on survival but also on health, growth and development. The findings will assist national stakeholders, governments, NGOs, and research institutes to close knowledge gaps for reducing neonatal mortality, morbidity and long term impairment. We have established global research priorities for adolescent health in low- and middle-income countries through 2030, building on earlier work that proposed research priorities in adolescent sexual and reproductive health.

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Research on children’s mental health in the community

Project to learn about youth – mental health.

The Project to Learn About Youth – Mental Health (PLAY-MH) analyzed information collected from four communities. The focus was to study attention-deficit/hyperactivity disorder (ADHD)  and other  externalizing and internalizing  disorders, as well as  tic disorders  in school-aged children. The purpose was to learn more about public health prevention and intervention strategies to support children’s health and development.

Read about the results of the Play-MH study

Study questions included:

• What percentage of children in the community had one or more externalizing, internalizing, or tic disorders?
• How frequently did these disorders appear together?
• What types of treatment were children receiving in their communities?

This project used the same methodology as the original Project to Learn about ADHD in Youth (PLAY) project.  Read more about the original study approach here .

Other research

Read more about research on

• Tourette syndrome

CDC and partner agencies are working to understand the prevalence of mental disorders in children and how they impact their lives. Currently, it is not known exactly how many children have any mental disorder, or how often different disorders occur together, because no national dataset is available that looks at all mental, emotional, or behavioral disorders together.

Research on prevalence

What is It and Why is It Important?

Using different data sources

Healthcare providers, public health researchers, educators, and policy makers can get information about the prevalence of children’s mental health disorders from a variety of sources. Data sources, such as national surveys, community-based studies, and administrative claims data (like healthcare insurance claims), use different study methods and provide different types of information, each with advantages and disadvantages. Advantages and disadvantages for different data sources include the following:

• National surveys have large sample sizes that are needed to create estimates at the national and state levels. However, they also generally use a parent’s report of the child’s diagnosis, which means that the healthcare provider has to give an accurate diagnosis and the parent has to accurately remember what it was.
• Community-based studies offer the opportunity to observe children’s symptoms, which means that even children who have not been diagnosed or do not have the right diagnosis could be found. However, these studies are typically done in small geographic areas, so findings are not necessarily the same in other communities.
• Administrative claims are typically very large datasets with information on diagnosis and treatment directly from the providers, which allows tracking changes over time. Because they are recorded for billing purposes, diagnoses or services that would not be reimbursed from the specific health insurance might not be recorded in the data.

Using different sources of data together provides more information because it is possible to describe the following:

• Children with a diagnosed condition compared to children who have the same symptoms, but are not diagnosed
• Differences between populations with or without health insurance
• How estimates for mental health disorders change over time

Read more about using different data sources.

National data on children’s mental health

A comprehensive report from the Centers for Disease Control and Prevention (CDC), Mental Health Surveillance Among Children — United States, 2013 – 2019 , described federal efforts on monitoring mental disorders, and presented estimates of the number of children with specific mental disorders as well as for positive indicators of mental health. The report was developed in collaboration with the Substance Abuse and Mental Health Services Administration (SAMHSA ), the National Institute of Mental Health (NIMH ), and the Health Resources and Services Administration (HRSA ). It represents an update to the first ever cross-agency children’s mental health surveillance report in 2013.

Read a summary of the findings for the current report using data from 2012-2019

Read a summary of the findings for the first report using data from 2005-2011 .

The goal is now to build on the strengths of federal agencies serving children with mental disorders to:

• Develop better ways to document how many children have these disorders,
• Better understand the impacts of mental disorders,
• Inform needs for treatment and intervention strategies, and
• Promote the mental health of children.

This report is an important step on the road to recognizing the impact of childhood mental disorders and developing a public health approach to address children’s mental health.

Holbrook JR, Bitsko RB, Danielson ML, Visser SN. Interpreting the Prevalence of Mental Disorders in Children: Tribulation and Triangulation. Health Promotion Practice. Published online November 15, 2016 https://www.ncbi.nlm.nih.gov/pubmed/27852820 .

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