New ECHO-funded Research Shows Chronic Illnesses in Children Do Not Necessarily Lead to Dissatisfaction

The ECHO researchers’ findings suggest that children with chronic illnesses are just as happy as their peers who do not have chronic illnesses.

The May 2019 issue of Pediatrics published findings from a recent study by ECHO researchers Courtney Blackwell, Amy Elliott, Jody Ganiban, Julie Herbstman, Kelly Hunt, Chris Forrest, and Carlos Camargo. The publication, titled “General Health and Life Satisfaction in Children With Chronic Illness,” focuses on children’s general health and life satisfaction in the context of chronic illness.

The study found that while children with chronic illnesses have worse health overall, their life satisfaction was comparable with that of their peers without chronic illnesses, suggesting that children with chronic illnesses may still lead happy lives.

As reported by the American Academy of Pediatrics, the authors noted, “the current study suggests that having a chronic illness is certainly a health challenge (evidenced by lower parent-reported general health) but does not preclude these children from having happy and satisfying lives that are comparable with those of peers without illness.”

This multi-cohort study evaluated results from questionnaires completed by 1113 caregivers completed on behalf of 1253 children aged 5-9 years with illnesses such as asthma, attention deficit hyperactivity disorder (ADHD), and digestive disorders. The study used the Patient-Reported Outcomes Measurement Information System Parent-Proxy measures for Global Health and Life Satisfaction.

Consistent with one of the primary goals of ECHO to leverage existing cohorts through harmonization of extant data and standardization of newly collected data, this study evaluated data from existing cohorts associated with the ECHO Program, with a specific focus on ECHO’s Positive Health outcome area.

“Overall, this work highlights clinical opportunities to broaden the perspective of health beyond the absence of disease to one in which all children, regardless of illness or impairment, can have well-being,” the authors said.

Read the full article to learn more.

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Link to AAP story

NIH, ECHO, and the Navajo Nation Make History with New Data-Sharing and Use Agreement

This landmark agreement enables the Navajo Birth Cohort Study (NBCS) to continue as part of the ECHO Program.

A Mother’s Love. Mallery Quetawki (Zuni Pueblo). University of New Mexico College of Pharmacy-Community Environmental Health Program

May 8, 2019

The National Institutes of Health (NIH) facilitated a data-sharing and use agreement between the Navajo Nation and NIH grantees of the Environmental influences on Child Health Outcomes (ECHO) Program at the Navajo Nation Head Start Center in Leupp, Arizona. This agreement, signed by the Navajo Nation, Johns Hopkins University, and RTI International, enables the Navajo Birth Cohort Study to continue participating in the ECHO Program while maintaining respect for Navajo Nation cultural beliefs, Tribal sovereignty, and community values. Additionally, the agreement serves as the first Tribal data-sharing agreement for a nationwide research consortium creating a large-scale database.

“Through this agreement I am confident that data sharing will benefit our Navajo people and allow us to further understand the relationship between uranium exposure, birth effects and childhood development,” said Navajo Nation President Jonathan Nez. “I am optimistic that through this partnership, the Navajo Birth Cohort Study will continue to progress and clarify the environmental impacts on our children’s health.”

The landmark agreement is the culmination of two years of discussion facilitated by NIH, and lays the groundwork for discussions with other Tribal Nations considering participation in biomedical research programs. Most importantly, the study is poised to benefit Navajo mothers and children as well as mothers and children everywhere. More information about the agreement can be found in the NIH news release here.