Caregiver Burden, Disparities, and Palliation in the Pediatric Tracheostomy Population

PROGRAM DESCRIPTION: Several studies have shown tracheostomy patients have higher health care utilization/costs, higher patient/family burdens and lower patient/family quality of life scores. Moreover, data suggests tracheostomy patients are more health inequality and that inequalities in this population are costly and can be catastrophic. In the first two years following pediatric tracheostomy, median total healthcare spending per child is over $25,000 and may exceed $100,000 per child, with over $1,000 in ventilation-related out-of-pocket expenses (OOPE) per month among families of children using home mechanical ventilation. Among families caring for ventilation-dependent children, 50% have reported difficulty paying for food, 44% have reported difficulty paying for housing, and 33% have reported borrowing money from family/friends. These economic hardships stem from a combination of increasingly expensive treatments and an evolving commercial payment system with higher premiums, deductibles and copayments, need for housing and automobile modifications as well as frequent and often long-distance travel. In addition to direct OOPE, these families face the indirect costs of lost wages from missed workdays, decreased opportunities for career advancement, unemployment, as well as significant psychological and emotional caregiver burden (CGB). Funds typically set aside for entertainment, retirement, or college savings are instead being spent on basic daily needs.
Data is emerging in other complex medical conditions showing the stresses related to direct and indirect costs of healthcare utilization are associated with lower quality of life, decreased compliance with treatment, and increased mortality.

The goal of this panel is to review and discuss the direct and indirect financial, emotional and physical burden faced by the pediatric tracheostomy population, review some of the cultural barriers that may occur when counseling patients/families regarding these potential obstacles and discuss variation approaches to address or mitigate these hardships.

OUTCOME OBJECTIVE 1: Obtain a better understanding of the unique care giver burdens that exist in the pediatric tracheostomy population

OUTCOME OBJECTIVE 2: Obtain a better understanding of the disparities that exist in the pediatric tracheostomy population

Be able to recognize and address patient/caregiver stressor, tailor care as to improve health outcome and patient/family quality of life

OUTCOME OBJECTIVE 3: Recognize and address patient/caregiver stressor, tailor care as to improve health outcome and patient/family quality of life

BACKGROUND STATEMENT: Financial, physical and emotional hardships related to direct and indirect costs of healthcare utilization in pediatric patients with tracheostomy effect patients and families quality of life, compliance with treatment, and medical outcomes.