Exploring caregiver burden and financial toxicity in caregivers of tracheostomy-dependent children

Baddour, Khalil; Mady, Leila J.; Schwarzbach, Hannah L.; Sabik, Lindsay M.; Thomas, Teresa Hagan; McCoy, Jennifer L.; Tobey, Allison B.J.

doi:10.1016/j.ijporl.2021.110713

Cited by 25 publications

(27 citation statements)

References 34 publications

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“…Finally, our results did not show an association between the level of education and parental empowerment. This contrasts with previous research, which has shown a relationship between mental status and the level of education (Baddour et al, 2021;Heslin et al, 2018;Lawoko, 2007). This discrepancy might be explained by the small number of low-educated parents in our sample.…”

Section: Discussioncontrasting

confidence: 99%

“…This might increase the parents' feeling of empowerment (Lawoko, 2007). Previous research has shown that unemployed parents encounter more psychological problems than employed parents (Baddour et al, 2021;Landolt et al, 2011;Lawoko, 2007). The higher level of empowerment in unemployed one-parent families that we found in our study remains unexplained.…”

Section: Discussionmentioning

confidence: 43%

“…Obviously, in two-parent families, the care of the child might be divided between the parents, which may influence their feeling of empowerment. In addition, economic security and sufficient financial resources make it possible to organize professional support for the family (Baddour et al, 2021). This might increase the parents' feeling of empowerment (Lawoko, 2007).…”

Section: Discussionmentioning

confidence: 99%

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Prognostic factors influencing parental empowerment after discharge of their hospitalized child: A cross-sectional study

Perk

Riet

Alsem

et al. 2022

Journal of Pediatric Nursing

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Section: Discussioncontrasting

confidence: 99%

Section: Discussionmentioning

confidence: 43%

Section: Discussionmentioning

confidence: 99%

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Prognostic factors influencing parental empowerment after discharge of their hospitalized child: A cross-sectional study

Perk

Riet

Alsem

et al. 2022

Journal of Pediatric Nursing

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“…Some studies reported that early tracheostomy (within 14 days of ventilation) could reduce MV duration and hospital LOS ( 38 , 39 ). From another point of view, caregivers of children with tracheostomy tubes have high caregiver workloads and financial burden ( 40 , 41 ). Our institution is highly concern about these problems.…”

Section: Discussionmentioning

confidence: 99%

Epidemiology, risk factors and outcomes of prolonged mechanical ventilation with different cut-points in a PICU

2023

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BackgroundA consensus on the definition of prolonged mechanical ventilation (PMV) for children does not exist. There is still lack of published work presenting the epidemiology, risk factors and outcomes at different cut-points for PMV patients. These are important for planning the goals of treatment and counseling of the prognosis for patient families. We aimed to determine the incidence, baseline characteristics, risk factors and outcomes of PMV in pediatric patients at various cut-points (>14, >21 or >30days).MethodsA retrospective cohort study among children <18-years-old who were PMV > 14 days in the PICU of King Chulalongkorn Memorial Hospital was conducted. The primary outcomes were incidence of PMV with various cut-points. We stratified patients into three groups (Group 1; PMV > 14–21, Group 2; >21–30, Group 3; >30 days) for evaluating the baseline characteristics, risk factors, and outcomes of PMV (extubation success, tracheostomy status and death). Factors associated with PMV and deaths were analyzed using univariate and multivariate logistic regression.ResultsFrom January 2018 to August 2022, 1,050 patients were screened. Of these, 114 patients were enrolled. The incidence of PMV > 14, >21 and >30 days were 10.9%, 7.3% and 5.0% respectively. Extubation success was significantly lower in Group 3 than in Groups 1 & 2 (15.4% vs. 62.2% & 56.0%, P < 0.001). Consequently, the tracheostomy rate (63.5% vs. 16.2% & 12.0%, P < 0.001), VAP rate (98.1% vs. 59.5% & 80.0%, P < 0.001), mortality rate by disease (34.6% vs. 5.4% & 20.0%, P = 0.003), median PICU LOS (50.5 vs. 22.0 & 28.0 days, P < 0.001) and median hospital LOS (124.5 vs. 55.0 & 62.0 days, P < 0.001) were also significantly higher for Group 3 compared with Groups 1 & 2. The factor associated with PMV > 30 days was VAP (aOR: 19.53, 95% CI: 2.38–160.34, P = 0.01). Factors associated with non-surviving patients were 3rd degree PEM (aOR: 5.14, 95% CI: 1.57–16.88, P = 0.01), PIM3 score ≥14 (aOR: 6.75, 95% CI: 2.26–20.15, P < 0.001) and muscle relaxant usage (aOR: 5.58, 95% CI: 1.65–18.86, P = 0.01).ConclusionExtubation failure, tracheostomy rate, VAP rate, mortality rate by disease, PICU LOS and hospital LOS were significantly higher for PMV >30 days. Consequently, we suggest that a 30-day duration as a cut-point for PMV in PICUs might be more appropriate.

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“…However, the decision to perform neonatal tracheostomy is typically not taken lightly by clinicians or families, due to risks associated with accidental decannulation, feeding difficulties, wound complications, speech-language development, and high burden on caregivers and the home healthcare system. 13,14 In addition, there is little consensus on the recommended timing of tracheostomy in infants, but unnecessary delay in those patients likely to benefit from tracheostomy may be detrimental to their long-term outcomes. 15,16 It remains very difficult for clinicians and families to discern whether an individual infant will benefit from tracheostomy, and, if so, at what time-point the procedure should be performed.…”

mentioning

confidence: 99%

Tracheostomy prediction model in neonatal bronchopulmonary dysplasia via lung and airway MRI

Adaikalam

Higano

Hysinger

et al. 2022

Pediatric Pulmonology

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Rationale: Clinical management of neonatal bronchopulmonary dysplasia (BPD) is often imprecise and can vary widely between different institutions and providers, due to limited objective measurements of disease pathology severity. There is critical need to improve guidance on the application and timing of interventional treatments, such as tracheostomy.Objectives: To generate an imaging-based clinical tool for early identification of those patients with BPD who are likely to require later tracheostomy and long-term mechanical ventilation. Methods:We conducted a prospective cohort study of n = 61 infants (55 BPD, 6 preterm non-BPD). Magnetic resonance imaging (MRI) scores of lung parenchymal disease were used to create a binomial logistic regression model for predicting tracheostomy requirement. This model was further investigated using clinical variables and MRI-quantified tracheomalacia (TM). Measurements and Main Results:A model for predicting tracheostomy requirement was created using MRI parenchymal score. This model had 89% accuracy, 100% positive predictive value (PPV), and 85% negative predictive value (NPV), compared with 84%, 60%, and 83%, respectively, when using only relevant clinical variables. In a subset of patients with airway MRI (n = 36), a model including lung and TM measurements had 83% accuracy, 92% PPV, and 78% NPV.Conclusions: MRI-based measurements of parenchymal disease and TM can be used to predict need for tracheostomy in infants with BPD, more accurately than clinical factors alone. This prediction model has strong potential as a clinical tool for physicians and families for early determination of tracheostomy requirement.

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Exploring caregiver burden and financial toxicity in caregivers of tracheostomy-dependent children

Cited by 25 publications

References 34 publications

Prognostic factors influencing parental empowerment after discharge of their hospitalized child: A cross-sectional study

Prognostic factors influencing parental empowerment after discharge of their hospitalized child: A cross-sectional study

Epidemiology, risk factors and outcomes of prolonged mechanical ventilation with different cut-points in a PICU

Tracheostomy prediction model in neonatal bronchopulmonary dysplasia via lung and airway MRI

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