Discussion
To our knowledge, this is the first study that identified the nature of healthcare utilisation and outcomes of children who underwent tracheotomy before 2 years of age in Korea. The number of infants requiring tracheotomy increased despite a declining national birth rate. Most paediatric patients underwent surgery in their first year of life and had at least one CCC. Presence of more CCCs was associated with higher mortality within 2 years after surgery. Home healthcare nursing utilisation was associated with lower mortality.
The increasing trend in tracheotomies observed in this study has also been observed in other studies. A single-tertiary centre study revealed that surgeries have been increasing over the last 30 years.4 A study of 14 155 participants registered in the Pediatric Health Information System database of 52 children’s hospitals in the USA from 2010 to 2018 also showed an increase in the annual number of tracheotomies.16 This tendency could be attributed to improvements in paediatric critical care technologies and the increased life expectancy of medically complex children.1
Children who underwent tracheotomy had higher healthcare utilisation than did the general population of children. The median total admission durations were 23 days and 10 days in the first and second years after tracheotomy, respectively; these were substantially higher than the reported median of 6.8 days and 7.5 days, respectively, for same-age Korean children.17 The annual median total medical costs per capita in both years were also far above those for same-age Korean children (US$917.5).17 As the benefit coverage rate in Korea was approximately 60% during the study period, higher actual medical expenses were estimated.18 These results were consistent with previous findings.19 20 A study including 502 children in the USA who underwent tracheotomy in 2009 found that the total healthcare spending for hospitalisation during the 2 years after the surgery was over US$75 000.21
In the current study, approximately 48.0% of patients underwent surgery in Seoul, and the relevance index for other regions was lower than that for the capital city. Moreover, the home care nursing utilisation rate was higher in Seoul. Patients living in remote areas of the capital city may have difficulties with not only undergoing surgery but also receiving postoperative supportive care. A survey reported that caregivers of medical technology-dependent children in Korea had substantial problems taking care of their sick children and managing medical devices at home.22 Studies have urged the establishment of a well-equipped environment and a partnership between hospitals and community care systems for successful tracheostomy management after discharge.23 24 To provide proper care after discharge, a referral system and home healthcare services must be developed throughout the country. For example, the American Academy of Pediatrics has called for fostering family provider–community partnerships.25 Establishment and implementation of comprehensive measures, such as standardised education protocols, systematic communication between tertiary care centres and primary care providers, and activation of visiting home healthcare, respite care and school-based specialised services, are encouraged.26 27
In this study, most hospitalisations after tracheotomy were due to respiratory or neurological conditions. Notably, among the top 10 conditions, 7 were identified as ACSCs, and 8 among the top 20 conditions were respiratory problems. The aforementioned comprehensive measures could help minimise avoidable hospitalisations.12 13 26 27 In order to reduce respiratory problems at home, caregivers should be educated on adequate secretion management, clean techniques for aspiration and the importance of vaccination.28 The American Thoracic Society guidelines also emphasise the importance of education. Continuous efforts to obtain, strengthen and improve skills are encouraged to ensure patient safety and clinical benefits. The guidelines presented detailed educational objectives in various domains.29 The utilisation of telemedicine can be an additional option for supporting parents, especially those with limited medical resources. 27% of hospitalisations were shown to be prevented by telemedicine in a prospective clinical study of tracheostomy-dependent children, with caregivers reporting improved safety and quality of life.30
In this study, the mortality rate within 2 years after surgery was 37.8%, higher than that previously reported. A retrospective single-centre study including 68 children who underwent tracheotomy before age 2 found that 23.5% of patients died.31 Other recent studies reported that approximately 13%–27% of paediatric patients who underwent tracheotomy died.32–35 The higher mortality rate may be attributed to the broader indications for tracheotomy in Korea, where doctors sometimes perform the procedure even when it may not significantly alter the prognosis. This can be inferred from the higher population-based tracheotomy incidence rate in Korea (10.9 per 100 000 child-years vs 6.0 per 100 000 child-years in the USA) and deserves further study.6 To minimise avoidable tracheotomies in infants, a multidisciplinary approach involving evidence-based guideline development, specialised training for healthcare professionals, clear communication with families about prognosis and treatment options, and early discussions on advanced care planning is crucial. Additionally, regular case reviews and data analysis can contribute to improved decision-making and outcomes.
The greater the number of CCCs present among patients who underwent tracheotomy, the higher the association with mortality. Since the specific cause of death for each patient was not ascertainable in this study, caution is warranted in the interpretation of our findings. However, our findings could be used in shared decision-making when deciding to proceed with tracheotomy. It would be beneficial to share with parents that the risks/burdens of the procedure, particularly the risk of mortality due to underlying conditions, must be considered.
Those receiving home care nursing demonstrated lower odds of mortality in this study. Home care nursing has been shown in previous studies to assist with transitioning safely from the hospital to home and reducing the risk of readmission. Additionally, research has demonstrated its ability to decrease family burnout and enhance the quality of life for children.36–38 Furthermore, cost-effectiveness analyses have revealed significant cost-saving effects associated with home care nursing.36 39 Establishing supportive systems like home healthcare could potentially contribute to reducing mortality rates and alleviating the burden on families.
This study had limitations. First, the KNHIS is based on claims data and we could not obtain detailed clinical data or identify the patient’s medical condition. Although we used CCC codes to identify the disease severity, it may not have reflected the patient’s actual medical condition. Moreover, we could not ascertain the specific reasons for tracheotomy or underlying causes of mortality. Therefore, prospective cohort studies should be conducted to determine preoperative and postoperative conditions and prognoses in the future. Second, as a retrospective cohort study, this study examined associations rather than causal relationships, thus precluding the determination of cause–effect relationship. This aspect could also be further addressed in a prospective cohort study. Nevertheless, this study had several strengths. First, it was a nationwide study that identified children who underwent tracheotomy within 2 years after birth. Because 97% of individuals are covered by a unified national health insurance system,40 our findings could be generalised to the entire population and minimise bias. Second, because the KNHIS database contains healthcare utilisation variables, a nationwide analysis of healthcare expenditure and admission days was possible. Thus, our study can be used as a reference for preoperative counselling and parental preparation during the postoperative phase.
In conclusion, children with tracheostomies often experience complex conditions. Traditional healthcare models have difficulty meeting the high healthcare needs of these patients, and they frequently receive fragmented and disorganised care.41 An integrated care system that links hospital-based specialists with community-based healthcare can be helpful. It is necessary to continue studying the characteristics, needs and outcomes of this population as the information gathered will be beneficial to patients and caregivers.