In critically ill adult patients, placement of a tracheostomy tube is a frequent procedure. In paediatric care it is much less frequent on account of its technical complexity and the high rate of complications.1,2 Advances in neonatal and paediatric intensive care have achieved an increase in survival of children with severe diseases. Tracheostomy is a procedure that can increase both survival and quality of care in patients who require prolonged mechanical ventilation (MV): it improves interactions between children and their families, increases comfort and reduces the need for sedation and the risk of withdrawal. In addition, early tracheostomy can reduce the severity of oral aversion and metabolic needs, improving growth and developmental outcomes.1 However, the complexity of these patients poses a challenge.3 Most are critically ill, medically complex and have underlying diseases that require the use of medical devices.4 The most frequent indications for tracheostomy are bypassing upper airway obstruction, facilitating suctioning for airway clearance and the need for long-term MV.5

Children with tracheostomies are considered medically fragile because they may develop complications that constitute life-threatening emergencies.6 Intra- and post-operative complications include haemorrhage, infection, pneumothorax, mucus plugging and accidental decannulation. Potential late complications include formation of granulation tissue, mucus plugging, accidental decannulation, bleeding and tracheomalacia.3

Paediatric tracheostomy care chiefly involves tracheostomy suctioning, stoma care and tracheostomy tube cleaning.7 Children with long-term tracheostomies who in the past would have remained in hospital can now return home thanks to advances in technology8 and training of their caregivers.

Few studies in the literature offer a description of the comprehensive followup-of tracheostomised paediatric patients. Most articles present clinical data and do not delve into the impact on the family in socioeconomic terms such as social vulnerability, language barriers or school problems.

Due to the particular characteristics noted above, in our tertiary care women’s and children’s hospital, all paediatric patients with a tracheostomy are followed up by the Department of Palliative Care and Chronic Medically Complex Illness (DPCCMCI).

The aim of this article is to describe the clinical and social profile of paediatric patients with tracheostomy followed up by the DPCCMCI in the last two years.

We conducted a single-centre retrospective observational and descriptive study including all paediatric patients with a tracheostomy managed by the DPCCMCI of a tertiary care hospital between November 2020 and June 2022. The parents or legal guardians of included patients signed the informed consent to participation.

The data were collected through the review of electronic health records.

To describe patient profiles, we collected quantitative and qualitative data on demographic, clinical, microbiological and social variables. The demographic variables included age, sex, and date of tracheostomy procedure. The clinical variables included the underlying disease, indication of tracheostomy, swallowing disorders, feeding modality, need of MV and/or oxygen therapy, use of a speaking valve or cap, frequency of tube changes, complications and date of decannulation. The microbiological variables included the microorganisms isolated from tracheal aspirate samples, with cultures performed only in the presence of symptoms suggestive of tracheobronchitis (fever, cough, increased in secretions). The Department of Microbiology of the hospital considers that isolates in a tracheal aspirate culture are clinically significant when there is a predominant bacterium that is also a potential airway pathogen. Antimicrobial susceptibility testing is performed in isolates of cultures considered as significant. The decision to interpret the presence of the identified pathogen as colonization versus infection rested with the clinician in charge. We also documented the prescription of antibiotherapy through the nebulised, oral or intravenous route.

When it came to social variables, we collected information regarding the education provided to families, social risk, requests for care for the paediatric patient, type of schooling and the presence of language barriers. Education on the management of tracheostomy was delivered to the primary caregivers of the patient (usually the parents), at least 2 carers per patient. This training started during the patient’s stay in the paediatric intensive care unit (PICU), carried out by paediatric intensive care specialists and nurses, right after the procedure, and continued during the stay in the paediatric ward (nurses and doctors of the paediatric ward, department of pulmonology and the DPCCMCI). Families received an informational brochure on the care of children with tracheostomy, a document developed in the hospital that is modified as changes and updates are introduced in the management of these patients. Before discharge, the primary caregivers of the child were assessed using a checklist on equipment and theoretical knowledge (Fig. 1).

Figure 1.

Equipment and knowledge checklist.

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Social risk, in the absence of validated scales, was assessed using a guidance tool applied by the Department of Social Work of the hospital to guide social diagnosis and intervention in paediatric chronic illness (ADISMIC scale: Aproximación Diagnóstica e Intervención Social en la Enfermedad Infantil Crónica)9 (Fig. 2). The social worker of the DPCCMCI passed the scale to each family at the beginning of follow-up, soon after the tracheostomy procedure.

Figure 2.

ADISMIC scale used to guide social diagnosis. Each item is scored as absent/low, moderate or high. Group (A) categories refer to the complexity of disease, group (B) categories to family vulnerability and group (C) categories to social risk. The total sum of the scores in the three sections gives an approximate social diagnosis and suggests the type of social work intervention that may be implemented (see Fig. 3).

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We entered the data into an Excel spreadsheet formatted for the purpose. The statistical analysis was conducted with the software package SPSS, version 24. We conducted a descriptive analysis of the data, expressing quantitative variables in terms of the mean or median and interquartile range (IQR) and qualitative variables as percentages. The study was approved by the research ethics committee of the hospital.

Figure 3.

Social diagnosis and social work intervention suggested based on the score in the ADISMIC scale.

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Few studies in the literature have described the profile of paediatric patients with tracheostomy tubes. Al-Samri et al.11 defined the clinical course in 72 children with tracheostomy over a 17-year period. They classified the indications for tracheostomy into 3 groups: upper airway obstruction in a specific anatomical site (45%), upper airway obstruction associated with a complex medical condition (33%) and need of access to lower airways for long-term ventilation (22%). The most frequent indication was obstruction due to subglottic stenosis (21%) or in the context of a complex craniofacial syndrome (21%). In our sample, the most frequent indication was also upper airway obstruction (66%), chiefly subglottic stenosis and vocal cord paralysis. Therefore, most patients in the cohort were not ventilator-dependent. It is important to take into account the advances achieved in the past 30 years in non-invasive home mechanical ventilation ,12 which has allowed a reduction in the performance of tracheostomy in patients who require long-term ventilation.

The most frequent complications in our study were granulation tissue, in agreement with the findings of Lubianca Neto et al.13 in a systematic review of cases ranging from 1978 to 2020. The authors reported a mean rate of complications of 40%, with cutaneous lesions and granulation tissue being the most frequent types, as was the case in our series.

Respiratory infections, including tracheobronchitis and pneumonia, are common in paediatric patients with tracheostomies and are associated with antibiotic prescribing and a high rate of hospitalization.14 In most children with an artificial airway, the trachea is colonised by a broad range of bacteria that are not present in the healthy pharyngeal microbiome. A study conducted in 93 children with long-term tracheostomies in the United States15 found a predominance of gram-negative bacteria. Still, 55.9% of patients had cultures positive for methicillin-resistant S aureus (MRSA) and the prevalence of MRSA and of methicillin-sensitive S aureus (MSSA) was higher in the first year following tracheostomy placement and decreased thereafter. In contrast, the prevalence of P aeruginosa remained relatively stable, with detection in 60%–80% of the patients, regardless of the time elapsed since the procedure. In our sample, the most prevalent microorganism was P aeruginosa, followed by other nosocomial gram-negative bacilli and, third in frequency, MSSA, with a lower prevalence of MRSA compared to case series in the United States.

Paediatric patients with tracheostomies frequently receive systemic broad-spectrum antibiotics. In our study, most patients had received a course of systemic antibiotherapy in the past 20 months, and ciprofloxacin was the agent prescribed most frequently. Nearly 30% of the patients had received 3 or more courses of systemic antibiotherapy in the past 20 months. The use of broad-spectrum antibiotics increases the risk of antimicrobial drug resistance, promoted by frequent exposure to antimicrobials in health care settings that serve as reservoirs for these microorganisms. They also have adverse effects, most frequently diarrhoea.14 It is important to give careful consideration to the indication of treatment for bacteria isolated from tracheal aspirate specimens, as their presence may be limited to airway colonization. The possibility of not initially treating a respiratory exacerbation with antibiotics should also be considered, since viral etiology is more frequent in pediatrics. If the patient is stable and exhibits no other signs of bacterial infection, watchful waiting should be contemplated. If antibiotherapy is initiated, early discontinuation should be considered if bacterial infection is not confirmed by culture, and otherwise, antibiotic de-escalation based on the results of susceptibility testing.

The decision to discharge home a child with a tracheostomy requires careful planning.16 There are few published data on the follow-up of these patients by multidisciplinary paediatric chronic medically complex condition units. The DPCCMCI in our hospital is staffed by paediatricians, nurses, social workers, psychologists and spiritual counsellors to deliver comprehensive care to patients and coordinate services at different levels of care, chiefly primary care and specialised medical care. Patients with tracheostomy are referred to the DPCCMCI once the procedure has been performed to provide support through the training of families, discharge planning and management, post-discharge outpatient follow-up and coordination of out-of-hospital services.

Paediatric tracheostomy has an impact on the life of both the patient and the family, described by Hopkins et al.17 in a case series in the United Kingdom. The authors found a deleterious effect on quality of life, sleep, social life and work. Defining the social needs of paediatric patients is difficult, as there are no validated scales for the paediatric age group to help make a social diagnosis and develop an intervention plan. In our study, we analysed social risk through the ADISMIC scale and found that more than half of the families were in crisis and the rest at risk. In nearly 25% of families, one of the caregivers was exclusively dedicated to the care of the child, as the child required continuous in-person care. This was incompatible with work, so these families received benefits for caring for the ill child. The high percentage of families with a language barrier (36%) must also be taken into account when training families, as it is an additional difficulty.

More than half of the patients in the study were enrolled in school, and most of them attended conventional schools, with the percentage rising to 89.6% if we only take into account children in the age range in which schooling is compulsory. Children attending conventional schools were accompanied by a caregiver trained on basic tracheostomy care, a task performed by nurses in the DPCCMCI without which it would not be possible to guarantee the safety of the patient in the school setting. Few studies in the literature focus on the schooling of children with tracheostomy. Patel et al.18 assessed the school experience of children with tracheostomy tubes: more than half of the schools did not have any properly trained staff, in 2 cases the parents did not know whether the school had such staff and 5 school did have a school nurse or an adequately trained teacher, but they were not always available. The authors concluded that it was important to improve coordination of care with schools as part of the multidisciplinary management of these children.

An increasing number of children with a broad diversity of underlying diseases require tracheostomy, and the main indication for it is bypassing upper airway obstruction. They are fragile patients with a high risk of complications, so it is essential to train families and to ensure comprehensive and coordinated care. The social analysis of the families included in the study evinced that more than half were in crisis, which reflects the impact of a child with a tracheostomy on the family and highlights the importance of addressing the social needs of these patients. For this reason, models of care by multidisciplinary teams that offer comprehensive follow-up and coordination between services and different levels of care, such as children's medically complex diseases units, are necessary. Schooling of children with tracheostomies is possible and can be safe if caregivers and/or school nurses are trained on the management and care of tracheostomies.

The study was approved by the Ethics Committee for Research with Medicines of the Fundació Sant Joan de Déu. ECRM Code: PIC-39-21.

This research did not receive any external funding.

The authors have no conflicts of interest to declare.