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Supporting Tracheostomy Decision-Making for Families and Providers

Supporting Tracheostomy Decision-Making for Families and Providers 1024 683 Abbie Miller

The Trach Scoring Tool, developed by BPD leaders at Nationwide Children’s Hospital, offers support for physicians and families.

The decision of when to do a tracheostomy on an infant is difficult, to say the least, says Leif Nelin, MD, division chief of Neonatology at Nationwide Children’s Hospital.

“Every family has different knowledge, attitudes and comfort levels about what a tracheostomy means for their child,” he says. “In addition, different attendings may have different criteria or thresholds that they use to guide their recommendations about moving from intubated mechanical ventilation to a tracheostomy.”

Long-term invasive positive pressure ventilation is often needed for infants with the most severe forms of bronchopulmonary dysplasia (BPD), a chronic lung disease associated with prematurity. At Nationwide Children’s, one of the largest BPD programs in the country, the overall tracheostomy rate for infants with BPD is about 5%, says Dr. Nelin. He estimates it’s higher for those who have severe BPD.

While long-term ventilation, which requires tracheostomy, is often life-saving, it is also associated with higher risk of mortality, complications including infections, readmissions and a host of other morbidities. Because of these risks and the significant caregiver burden that comes with tracheostomy, the decision of when to move forward with one is often based on subjective factors that vary from provider to provider.

While there is no national or international guideline for tracheostomy use for infants, it’s not at all the case for adults. Standards of care guiding the transition to tracheostomy are well established for them. After 7 days of mechanical ventilation, the providers move to tracheostomy, explains Dr. Nelin. For adults the data well support these evidence-based guidelines.

In an effort to likewise standardize care for infants, in 2017, Dr. Nelin and his collaborators began developing a Trach Scoring Tool. They gathered together all the data available and involved experts across the field.

“The tool we developed considers different disciplines and domains,” says Dr. Nelin. “We gathered feedback and insights from neonatologists, respiratory therapists, pharmacists, nutritionists, therapists and many others who are vital to our comprehensive BPD program.”

Then, in late 2019, the neonatal intensive care unit at Nationwide Children’s started using the tool to help improve consistency among physicians and to help educate families.

“Our experience has been positive with the tool,” says Dr. Nelin. “It has helped improve communication about tracheostomy between parents and health care providers and among the care team. By sharing our tool, we hope that other centers will consider developing tools for their programs.”

Now, the team is working with the BPD Collaborative to expand the tool to develop national guidelines. In 2022, a multi-center survey showed that criteria for using tracheostomy in NICUs are widely variable.

“Everyone agrees that guidelines are needed, but when you consider different patient populations and different resources available to hospitals and families, the conversation can get complicated,” says Dr. Nelin. “We are starting, though, and I think we’ll get there.”

The first step, Dr. Nelin says, is to gather more data. “Adults can do large trials and gather a lot of data in a year. But with infants, we need to do trials over a longer period of time or collaborate among many hospitals to generate studies of adequate size within reasonable timeframes. This is where we are working now.”

Download the Trach Scoring Tool

References:

  1. Miller AN, Shepherd EG, Manning A, Shamim H, Chiang T, El-Ferzil G, Nelin LD. Tracheostomy in severe bronchopulmonary dysplasia-how to decide in the absence of evidence. Biomedicines. 2023;11(9):2572. Published 2023 Sep 19. doi:10.3390/biomedicines11092572
  2. Yallapragada S, Savani RC, Mūnoz-Blanco S, Lagatta JM, Truog WE, Porta NFM, Nelin LD, Zhang H, Vyas-Read S, DiGeronimo R, Natarajan G, Wymore E, Haberman B, Machy J, Potoka K, Children’s Hospital Neonatal Consortium severe bronchopulmonary dysplasia subgroup, Murthy K. Qualitative indications for tracheostomy and chronic mechanical ventilation in patients with severe bronchopulmonary dysplasia. Journal of Perinatology. 2021;41(11):2651-2657. doi:10.1038/s41372-021-01165-9

Image credit: Nationwide Children’s

About the author

Abbie (Roth) Miller, MWC, is a passionate communicator of science. As the manager, medical and science content, at Nationwide Children’s Hospital, she shares stories about innovative research and discovery with audiences ranging from parents to preeminent researchers and leaders. Before coming to Nationwide Children’s, Abbie used her communication skills to engage audiences with a wide variety of science topics. She is a Medical Writer Certified®, credentialed by the American Medical Writers Association.

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