MCH-MRN E-News Update: June 2019
Coordinated by CAHMI
Expanding Current PROMIS Instruments to Early Childhood

As a part of the National Institutes of Health (NIH) Environmental influences on Child Health Outcomes (ECHO) research program, the Person Reported Outcomes (PRO) Core at Northwestern University is extending the current Patient-Reported Outcome Measurement Information System (PROMIS®) to include early childhood (ages 1-5 years) parent-report instruments. Led by MPIs, Drs. David Cella and Richard Gershon, the expansion of PROMIS® indicators to include children ages 1-5 years will help to fill a gap in measures for this age group, as identified by the MCH-MRN Strategic Agenda .

Measures are currently being developed for early childhood in the domains of:
  • General health
  • Internalizing/externalizing behaviors (i.e. anxiety, anger/irritability, depressive symptoms)
  • Sleep disturbance and sleep-related impairment
  • Physical activity
  • Family and peer relationships
  • Well-being (i.e. positive affect, engagement, and self-regulation)

Using the state-of-the-science PROMIS® mixed methods approach, the PRO Core team 1) conducted an extensive literature and measurement review; 2) engaged transdisciplinary experts in developing and modifying domain frameworks; 3) conducted 38 concept elicitation interviews with parents of children ages 1-5 years to confirm the conceptual frameworks and identify any new concepts for potential inclusion; 4) completed 41 cognitive interviews to evaluate the understandability of draft survey items; and 5) fielded items with a nationally-representative sample of the target demographic for psychometric evaluation, calibration, and norming using item response theory techniques.

Particular emphasis was placed on developing measures that capture observable features (i.e., behaviors), rather than a child’s internal state (i.e., beliefs and feelings), with a goal of balancing psychometric robustness with efficiency. This shift from parent proxy to parent report reflects the FDA’s guidance for pediatric PRO measures and parent feedback during interviews.
Developing Well-being Measures for Early Childhood

A core component of this measurement development work is balancing developmental sensitivity with lifespan coherence in order to maintain conceptual concordance with existing PROMIS® frameworks while ensuring the new measures accurately reflect early childhood development. For the domain of well-being in particular, components of the PROMIS® constructs of life satisfaction, meaning, and purpose (e.g., interest and engagement, goal-directedness, and positive self-concept) are meaningful markers of well-being in young children; however, these measures required developmental translation to relevant and meaningful terms for this age period.

The foundation of the resulting domains – positive affect, engagement, and self-regulation – stemmed from the National Survey of Children’s Health (NSCH) flourishing scale and the continued work by the MCH-MRN on positive and relational health. These and the new PROMIS® early childhood parent report measures will be available on in Fall 2019.  

Health in early childhood: The PROMIS ® of developmentally-based measurement for pediatric psychology ,” is currently under review and was written by Courtney K. Blackwell, Sheila Krogh-Jespersen (Feinberg School of Medicine, Northwestern University), Kristin Buss (Penn State University), Joan Luby (Washington University School of Medicine in St. Louis), Jin-Shei Lai, David Cella and Lauren Wakschlag (Feinberg School of Medicine, Northwestern University). 
Measuring General Health and Life Satisfaction in Children with Chronic Illness Using PROMIS Instruments
Research in the June 2019 Pediatrics , led by Courtney K. Blackwell, PhD, offers encouraging news for the rising number of U.S. children living with a chronic illness that affects their daily function. The study, “ General Health and Life Satisfaction in Children with Chronic Illness ,” published online May 6, found that while children with a chronic illness have worse overall health as reported by parents, they appear to lead just as happy and satisfying lives as their peers without chronic illness.

The researchers combined data from three pediatric cohort studies taking place in 2017 within the NIH-funded Environmental influences on Child Health Outcomes (ECHO) research program. In total, 1,113 caregivers completed surveys for 1,253 children between ages 5 to 9 years. State-of-the-science PROMIS® instruments evaluated positive aspects of child health beyond the absence of problems. Questions focused on their child’s physical, mental, and social health.

Results showed that the 20 percent of children who had at least 1 chronic illness (including the roughly 9 percent who had 2 or more) had similar levels of life satisfaction as their healthier peers. The study identified “moderate” and “high” psychological stress levels and lower family income as two factors that lowered both overall health and life satisfaction among children with and without chronic illness.

Authors said major advancements in medicine and health care mean that many once-fatal conditions are now treatable, leading to not only longer life expectancies, but also more years living with disease. The authors also state that further research is needed on “positive assets” that may strengthen a child’s ability to adapt to challenges, satisfy needs, and attain goals, all of which promote well-being.  
Identifying and Promoting Positive Assets in Children to Promote Well-being

Child flourishing, which includes the ability to complete tasks and remain calm when faced with a challenge, was featured in last month’s E-news , with a recently published study on the impact of family resilience and connection on flourishing . The study found that even in the face of adversity, family resilience and connection can promote child flourishing, which in turn promotes well-being. While society addresses the remediable causes of adversity, the positive assets of family resilience and connection can be promoted to strengthen child flourishing and well-being.

General Health and Life Satisfaction in Children With Chronic Illness was written by Courtney K. Blackwell (Feinberg School of Medicine, Northwestern University) et al. on behalf of program collaborators for Environmental influences on Child Health Outcomes (ECHO). The study was supported by the ECHO program and funding from the National Institutes of Health. Courtney K. Blackwell is an active MCH-MRN and Positive and Relational Health TWG member.

Blackwell CK, Elliott AJ, Ganiban J, Herbstman J, Hunt K, Forrest CB, Camargo CA. General Health and Life Satisfaction in Children With Chronic Illness. Pediatrics. 2019 Jun 1;143(6):e20182988.
Survey word cloud. Adobe Stock
Provide Input on the National Survey of Children’s Health (NSCH)

The  NSCH is funded and directed by HRSA MCHB  and is a powerful national and state resource. The CAHMI expedites and supports effective use of data from the NSCH to improve child, youth, family and community health and well-being in the US through its HRSA supported Data Resource Center.

The CAHMI is assembling ideas and input from our network related to future iterations of the NSCH.
  • Click here to provide input on what you wish to see prioritized and maintained in the NSCH, what you may recommend editing or adding, and your other ideas for optimizing this essential national resource.  
Engage with the MCH-MRN
The MCH-MRN provides a platform to: inspire, support, coordinate, and advance efforts related to MCH measurement, promote measurement innovation and shared accountability, and improve outcomes and systems performance on behalf of the nation’s children, youth, and families. 

MCH-MRN members contribute to setting a strategic agenda, collaborate to address MCH measurement gaps and needs, and receive resources and information relevant to MCH measurement. Here are some further ways to get involved with the MCH-MRN:
  • Engage in the network. Please fill out our engagement tool to help us understand how you would like to be engaged in the MCH-MRN and how best to keep you informed about network activities.
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The Child and Adolescent Health Measurement Initiative (CAHMI) is a center within the Department of Population, Family, and Reproductive Health at the Johns Hopkins Bloomberg School of Public Health