Pilot testing of “A NICU guide to tracheostomy”

Bronchopulmonary dysplasia (BPD) is a pulmonary morbidity experienced by many preterm infants, and a subset will have tracheostomies placed in the neonatal intensive care unit (NICU). Tracheostomies have many benefits including decreasing sedation, promoting developmental progression, and allowing infants requiring long-term mechanical ventilation to be discharged home.1 However, these infants face safety risks associated with a tracheostomy at home.2, 3 Tracheostomies complicate hospital discharge due to requirements for home nursing, home intensive care, care coordination for durable medical equipment, and caregiver training.4-6 Decision and communication guides increase family-centered education and engagement. We previously identified a family-centered communication guide7 and conducted semi-structured interviews with parents of infants who had a tracheostomy and clinicians who care for such patients to explore their tracheostomy decision-making experiences, communication preferences, and perceptions of the guide.8 We adapted the guide to include tracheostomy indications, risks, and benefits that are infant-specific, focusing on BPD. Family stories and quotes were added from these interviews, along with infant pictures to depict everyday life with an infant with a tracheostomy. A working draft of the revised guide, “NICU Guide to Tracheostomy,” is located at https://tinyurl.com/Trach-Guide. The aims of the current study were to test the preliminary efficacy and acceptability of the revised guide with a general population before widespread implementation. We tested the revised guide using a within-subjects study design. Participants were asked to imagine they had an infant in the NICU requiring ventilator support for whom the medical team suggested a tracheostomy may be an option. Participants were asked if they would like their baby to receive a tracheostomy, have more time on the current treatment to see if their baby improved, or forgo further measures/choose comfort care. They then answered a validated measure of decisional conflict9 and five knowledge questions using true/false/unsure responses. Next, participants reviewed the “NICU Guide to Tracheostomy.” They re-answered the same decisional conflict and knowledge items, as well as 12 questions about the acceptability and appropriateness of the guide.10 Finally, participants were asked if they would want more information to make the decision and could provide a free-text response. The study protocol #202307058 was reviewed and approved by the Washington University in St. Louis Institutional Review Board. The sample was recruited and compensated using Prime Panels (Prime Research Solutions, Flushing, NY), an opt-in, nationally representative survey platform and participant panel. Adults ≥18 years of age living in the United States were eligible to participate. We aimed to recruit 120 participants to pilot test the guide. According to scoring guidelines, “yes” responses on the SURE decisional conflict screener are assigned a score of 1 and “no” responses are assigned a score of 0. A total score of <4 indicates the presence of decisional conflict. A McNemar's test was used to compare the proportion of participants indicating decisional conflict before and after reviewing the guide. The five knowledge questions were scored as a percentage correct; “unsure” responses were considered incorrect. Knowledge scores before and after reviewing the communication guide were compared with a paired t test. Each of the four acceptability questions were scored and averaged to create a final acceptability score from 1 to 5 per scoring guidelines. The last eight questions of the survey asked about the helpfulness of the guide, readability and length, and usability of the pictures, graphs, and quotes. Demographic data were collected. Participants completed the Single Item Literacy Screener, a validated tool to identify those with limited health literacy.11 The survey can be found in Appendix 1. One hundred and twenty-seven participants consented and completed the survey. The average completion time was 14.2 (SD = 9.6) min with median (IQR) of 11.8 (7.9, 17.8) min. We conducted standard data quality checks and excluded four participants who answered using straight line response patterns and nine participants who missed an attention check question. The final analysis included 114 participants. Participant characteristics are described in Table 1. After reading through the scenario and answering the survey, participants were asked if they had additional questions before being presented with the tracheostomy guide. Their questions/comments are in Table 2. Their suggestions included more information about quality of life with and without the tracheostomy, life expectancy, and emergency management. How beneficial is a tracheostomy? How long does [the medical team] think the baby will need the trach? How normal is this in infants? I don't know why the baby had breathing issues. Are they developmental? Was the baby born premature? Is there a specialist available? What are the chances for survival with and without the trach? I think a parent would need to know the child's potential for normal functioning and development otherwise. I want to know more detailed info and be able to ask questions that I have from the care providers and doctors. If I were faced with this decision, I would have many questions for the medical professionals. Parents and/or caregivers need to be aware of the expense of caring for the child at home and resources in their community that offer assistance. Does this sort of situation cause difficulty in meeting normal age-related milestones or cause learning disabilities? [What would] life without the trach be like? [What are the] potential costs and resources available to meet them? What support [is available], both financially and emotionally? [What is the] prognosis? [What are] the long-term causes and effects of a trach and the quality of life for that child? What are the alternatives? Is a trach only necessary for a baby that has BPD? Because some parents that have a child with a brain or nerve disorder may think getting a trach is a good idea, when clearly it states the outcomes of ever improving and getting off of it later is more possible for babies with BPD and not nerve or brain disorders. Maybe a link to a website with an actual video of a baby with a trach at different ages so you could see how they react to having one. More information on statistics of projected lifespan of baby. Parents and/or caregivers need to be aware of who to contact in case of a power outage. I didn't get any information regarding the possibilities of outcomes of not using [the trach] and what that entails. [The guide has] too pessimistic of an attitude. [It] paints a grim picture of the future. After reading the NICU tracheostomy guide, the proportion of participants reporting decisional conflict decreased from 52.6% to 35.1% (p = .001). The mean knowledge score increased significantly from 43.3% to 81.4% correct (p < .001). The mean acceptability score was high (4.11; SD = .66). Most (87.7%) participants “agreed” or “completely agreed” that “The handout meets my approval,” 71.9% “agreed” or “completely agreed” that “The handout is appealing to me,” and 76.3% “agreed” or “completely agreed” with the item, “I like the handout.” Supplemental Table 1 displays acceptability results. Responses to the final questions are described in Supplemental Table 2. Most participants reported that the tracheostomy guide would help them to decide (78.9%), and the language was easy to understand (93.0%). Six participants disagreed with the statement, “The length of the handout is appropriate,” indicating in their comments that it was too long. Most agreed that the pictures (95.6%), quotes (95.6%) and graphs/diagrams (93.0%) were helpful to understand the outcomes and imagine what it might be like to have an infant with a tracheostomy at home. Decision and communication guides are designed to aid in medical decision-making and improve clinician-patient communication. We tested the preliminary efficacy and acceptability of a communication guide and found the “NICU Guide to Tracheotomy” decreased decisional conflict, increased knowledge, and was well-received by participants from the general population. Future studies should include larger, multi-site cohorts that include participants of diverse demographics more closely resembling that of NICU families. When initially imagining a tracheostomy for a preterm infant, over half of participants in this study expressed decisional conflict. When approaching medical decisions for their children, parents often want information on prognosis, potential complications, expected healthcare needs after discharge, and alternative options.12 Participants who chose to comment wanted to know similar information. The communication guide incorporated these components including details of life at home with a tracheostomy, the requirements to care for such an infant at home, and the average timeline to decannulation for infants with BPD and chronic respiratory failure requiring tracheostomy placement. Tracheostomies increase caregiver emotional distress, and despite efforts to prepare families for discharge, caregivers often feel overwhelmed and unprepared upon arrival home.8,12,13 In this study, when presented with the “NICU Guide to Tracheostomy,” decisional conflict decreased, knowledge improved, and most participants welcomed using the guide to help them choose an option if they were faced with this situation. Most agreed that the pictures, quotes, and graphs/diagrams clarified outcomes and the reality of life at home with an infant with a tracheostomy. When asked, “Is there other information not presented in the ‘NICU Guide to Tracheostomy’ that would be helpful to you in making your decision?”, multiple participants requested more information about community, financial, and emotional support. In response, we added a section to the guide to highlight family support opportunities. One participant suggested adding a video. Links to videos can be added to depict excursions with tracheostomy equipment, and everyday life at home to facilitate understanding. For the minority of participants who felt that the guide was too long, creating separate guides for infants with BPD versus other diagnoses requiring prolonged mechanical ventilation can streamline the information. In the volunteered comments, participants indicated that a guide would not replace conversations with medical professionals. Communication guides do not replace face-to-face discussions between clinicians and families, but augment conversations, provide supplemental education, and serve as a reminder to clinicians to discuss the pros and cons of each option available. About 10–12 infants receive tracheostomies in our level IV NICU every year, limiting the pool of families available to complete pre- and post-intervention testing. We surveyed members of the general population using an imagined scenario and a within-subjects study design, allowing us to test the guide with participants before using it with families facing often emotional and challenging situations. However, it could be hard to imagine being in such a situation. In addition, while the survey platform aims for a sample of the general population, our participants were mostly white women with an average age older than the usual NICU parent, potentially impacting responses. We examined results with only those <45 years (n = 26), more representative of the population of parents in the NICU. Results were unchanged except decisional conflict was no longer statistically significant but trended similarly towards decreased decisional conflict. Future work should study the guide's effectiveness in a large multi-site cohort that more closely resembles the demographics of families facing this decision. Similarly, a subset of participants reported prior tracheostomy exposure which could have impacted their responses, particularly to the knowledge questions. We examined our results without those individuals, and results did not change; future work could test this guide and examine whether there is a greater impact among those with no prior tracheostomy experience. Infant tracheostomy placement can be a stressful experience for families and can cause significant decisional conflict. The objective of this study was to test a NICU tracheostomy communication guide in a general population and identify areas for improvement. We found that the communication guide could lower decisional conflict, improve understanding, and was rated acceptable and useful. Once implemented in routine care, the guide can be tested in care settings for continued feedback. Kylie M Bushroe: Conceptualization; methodology; data curation; investigation; formal analysis; resources; writing—original draft; writing—review and editing. Kelly D. Crisp: Formal analysis; writing—original draft; writing—review and editing. Ashley J. Housten: Conceptualization; methodology; data curation; investigation; supervision; writing—review and editing. Mary C. Politi: Conceptualization; methodology; data curation; investigation; supervision; writing—review and editing. The initial decision guide “Child Tracheostomy Decision Guide, 2011” was adapted with permission from: HSC Winnipeg Children's Hospital. The authors did not receive external funding for this project. Funds for the Prime Panels participants were supported in part by the Washington University Center for Collaborative Care Decisions, the Foundation for Barnes Jewish Hospital (5799), and the Washington University Department of Surgery. Mary C. Politi was a consultant for UCB Biopharma and EPI-Q on topics unrelated to the content of this manuscript. The study protocol #202307058 was reviewed and approved by the Washington University in St. Louis Institutional Review Board (IRB). Appropriate consent was obtained from all participants before participation. The data that support the findings of this study are available from the corresponding author upon reasonable request. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.