Challenges With Pediatric Home Tracheostomy Supplies

Abstract

Background:

Children with a tracheostomy require a variety of different supplies and equipment to be safely managed at home. At our institution, several caregivers reported running out of monthly supplies and difficulty obtaining additional supplies. The aim of this study was to determine how often children with a tracheostomy run out of supplies at home and to identify the types of supplies most commonly affected.

Methods:

Caregivers of children with a tracheostomy were invited to anonymously complete a survey regarding home tracheostomy supplies. The survey was administered from September 2022 – April 2023. Inclusion criteria were children with a tracheostomy who had been home for at least 3 months following initial hospital discharge. Children who were residents of a long-term care facility were excluded.

Results:

Caregivers of 28 children completed the survey. The majority of children, 82%, were ventilator-dependent. Only 14% of all respondents reported never running out of tracheostomy supplies. Tracheostomy ties (43%) were the most common supply to run out followed by heat and moisture exchangers (39%). Most caregivers (86%) identified the hospital as the place to obtain new tracheostomy tubes and 46% reported using a tube for longer than recommended due to difficulty obtaining a new tube. The durable medical equipment company was the most common place to obtain all other tracheostomy supplies. Half of all caregivers (50%) noted they had paid out of pocket for supplies. For ventilator-dependent children, few caregivers (17%) reported running out of ventilator supplies, with filters being most common. In the open response, other identified supply issues were pulse oximetry probes, tracheostomy cleaning kits, lubrication, syringes for inflating the cuff, and ventilator circuit attachments. Several caregivers noted obtaining supplies from other families or support groups. Medicaid was the primary health insurance for the majority of children (75%).

Conclusions:

The majority of caregivers who completed the survey reported running out of home tracheostomy supplies. Some supplies were used longer than recommended due to difficulty obtaining them. Many caregivers paid out of pocket for supplies they are unable to obtain through health insurance coverage. It was less common to run out of ventilator supplies than tracheostomy supplies.