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Association Between Children With Life-Threatening Conditions and Their Parents' and Siblings' Mental and Physical
Chris Feudtner1,2, Russell T Nye1, Jackelyn Y Boyden1
1Justin Michael Ingerman Center for Palliative Care, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
Insights
Family members of children with life-threatening conditions (LTCs) experience higher rates of healthcare utilization and diagnoses. This highlights potential poorer mental and physical health outcomes for these families, warranting supportive interventions.
Area of Science:
- Pediatric Health
- Family Medicine
- Public Health
Background:
- Family members of children with life-threatening conditions (LTCs) may face significant physical and mental health challenges.
- Empirical data on the health outcomes of these family members are limited.
Purpose of the Study:
- To investigate if mothers, fathers, sisters, and brothers of children with pediatric LTCs exhibit increased healthcare encounters, diagnoses, and prescriptions compared to families without such conditions.
- To quantify the health burden on families caring for a child with a severe illness.
Main Methods:
- Retrospective cohort study utilizing US commercial insurance claims data from July 2015 to June 2016.
- Matched case children with 4 types of LTCs (prematurity, congenital heart disease, cancer, neurologic impairment) with control children.
- Compared rates of healthcare encounters, physical/mental health diagnoses, and prescriptions between case and control families using multivariable negative binomial regression.
Main Results:
- Families of children with LTCs showed significantly higher rates of composite health outcomes (encounters, diagnoses, prescriptions).
- Mothers (IRR, 1.61), fathers (IRR, 1.55), sisters (IRR, 1.68), and brothers (IRR, 1.70) of children with LTCs had elevated rates compared to controls.
- Findings were adjusted for family-level differences and clustering.
Conclusions:
- Family members, including parents and siblings, of children with LTCs experience increased healthcare utilization and diagnoses.
- These findings suggest potential adverse physical and mental health impacts on families coping with a child's severe illness.
- Interventions are recommended to support the well-being of parents and siblings of children with LTCs.
Importance:
Despite concerns regarding the potential deleterious physical and mental health outcomes among family members of a child with a life-threatening condition (LTC), few studies have examined empirical measures of health outcomes among these family members.
Objectives:
To examine whether mothers, fathers, sisters, and brothers of children with 1 of 4 types of pediatric LTCs have higher rates of health care encounters, diagnoses, and prescriptions compared with families of children without these conditions.
Design, Setting, And Participants:
This retrospective cohort study included US families with commercial insurance coverage from a single carrier. Children who had 1 of 4 LTCs (substantial prematurity, critical congenital heart disease, cancer, or a condition resulting in severe neurologic impairment) were identified by a diagnosis in their insurance claim data between July 1, 2015, and June 30, 2016. Each case child and their family was matched with up to 4 control children and their families based on the age of the case and control children. Data were analyzed between August 2020 and March 2021.
Exposures:
Having a child or sibling with substantial prematurity, critical congenital heart disease, cancer, or a condition resulting in severe and progressive neurologic impairment.
Main Outcomes:
Rates of occurrence of health care encounters, physical and mental health diagnoses, and physical and mental health medication prescriptions, identified from insurance claims data, were compared between case and control families using a multivariable negative binomial regression model. The statistical analysis adjusted for observed differences between case and control families and accounted for clustering at the family level.
Results:
The study included 25 528 children (6909 case children [27.1%] and 18 619 control children [72.9%]; median age, 6.0 years [IQR, 1-13 years]; 13 294 [52.1%] male), 43 357 parents (11 586 case parents [26.7%] and 31 771 control parents [73.3%]; mean [SD] age, 40.4 [8.1] years; 22 318 [51.5%] female), and 25 706 siblings (7664 case siblings [29.8%] and 18 042 control siblings [70.2%]; mean [SD] age, 12.1 [6.5] years; 13 114 [51.0%] male). Overall, case mothers had higher rates of the composite outcome of health care encounters, diagnoses, and prescriptions compared with control mothers (incident rate ratio [IRR], 1.61; 95% CI, 1.54-1.68), as did case fathers compared with control fathers (IRR, 1.55; 95% CI, 1.46-1.64). Sisters of children with LTCs had higher rates of the composite outcome compared with sisters of children without LTCs (IRR, 1.68; 95% CI, 1.55-1.82), as did brothers of children with LTCs compared with brothers of children without LTCs (IRR, 1.70; 95% CI, 1.56-1.85).
Conclusions And Relevance:
In this cohort study, mothers, fathers, sisters, and brothers who had a child or sibling with 1 of 4 types of LTCs had higher rates of health care encounters, diagnoses, and medication prescriptions compared with families who did not have a child with that condition. The findings suggest that family members of children with LTCs may experience poorer mental and physical health outcomes. Interventions for parents and siblings of children with LTCs that aim to safeguard their mental and physical well-being appear to be warranted.
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