We examine the incidence and prevalence of domiciliary ventilation in the South West region of the UK, assess trends over 15 years, and describe patient outcome. We conducted a retrospective review of all patients below 18 years receiving domiciliary ventilation in the South West region of the UK between January 1994 and August 2009. Children who received long-term ventilation solely in hospital were excluded from the study. Information was obtained from a locally held database, medical notes, and hospital administration systems. One hundred-six patients were identified. Prevalence has increased since 1994 from 0.2 to 6.7 per 100,000 children. The incidence of both invasive and non-invasive ventilations has increased with a trend towards more non-invasive therapy. The commonest underlying disorders were airway pathology (37 patients), neuromuscular disease (34 patients), and central congenital hypoventilation disorder (17 patients). Sixty-seven patients had significant co-morbidities. Of 38 non-current patients, 19 were transferred to adult ventilation services, 11 died, and 6 were successfully weaned from ventilatory support. In conclusion, there has been a 30-fold increase in the prevalence of paediatric domiciliary ventilation, in the South West region of the UK, since 1994. Co-morbidities are common. Very few children discontinue long-term ventilation, and increasing numbers of ventilated children are transferred to adult services.
All parents completed Impact of Event Scale-Revised and Hospital Anxiety and Depression Scale at 6 months. Of the 209 parents of 145 children recruited to the study, 78 (37%) were identified, on the basis of their Posttraumatic Adjustment Scale score at baseline, as being at risk of developing posttraumatic stress disorder, and randomized to the control or intervention condition. Follow-up data were provided by 157 of 209 parents (75%). Logistic regression analyses controlling for parent gender and child length of stay showed that high-risk control parents (n = 32) were significantly more likely to score above the clinical cutoff for all three psychological outcomes than parents deemed low risk at baseline (n = 89) (posttraumatic stress: odds ratio = 3.39; 95% CI, 1.28-8.92; p = 0.014; anxiety: odds ratio = 6.34; 95% CI, 2.55-15.76; p < 0.001; depression: odds ratio = 4.13; 95% CI, 1.47-11.61; p = 0.007). Only 14 of 38 (37%) high-risk intervention parents attended the follow-up clinic appointment they were offered. At follow-up, there were no statistically significant differences between the intervention and control groups, but there were small effect sizes in favor of the intervention for anxiety scores (Cohen d = 0.209) and depression scores (Cohen d = 0.254) CONCLUSIONS:: Screening parents for psychological vulnerability using measures such as the Posttraumatic Adjustment Scale may enable more efficient targeting of support. However, further research is needed on how best to provide effective follow-up intervention for families.
Implications for the preparation of patients undergoing angiography and for the timing and delivery of information and advice following a negative result are discussed.
Background and objective: Physical frailty is associated with increased mortality and hospitalizations in older adults. We describe the prevalence of physical frailty and its prognostic impact in patients with a spectrum of fibrotic interstitial lung disease (ILD). Methods: Patients with fibrotic ILD at the McMaster University ILD programme were prospectively followed up from November 2015 to March 2020. Baseline data were used to classify patients as non-frail (score = 0), pre-frail (score = 1-2) or frail (score = 3-5) based on modified Fried physical frailty criteria. The association between physical frailty and mortality was assessed using time-to-event models, adjusted for age, sex, lung function and diagnosis using the ILD Gender-Age-Physiology (ILD-GAP) score. Results: We included 463 patients (55% male, mean [SD] age 68 [11] years); 82 (18%) were non-frail, 258 (56%) pre-frail and 123 (26%) frail. The most common ILD diagnoses were idiopathic pulmonary fibrosis (n = 183, 40%) and connective tissue disease-associated-ILD (n = 79, 17%). Mean time since diagnosis was 2.7 AE 4.6 years. There were 56 deaths within the median follow-up of 1.71 (interquartile range [IQR] 1.24, 2.31) years. Both frail and pre-frail individuals had a higher risk of death compared to those categorized as non-frail at baseline (adjusted hazard ratio [aHR] 4.14, 95% CI 1.27-13.5 for pre-frail and aHR 4.41, 95% CI 1.29-15.1 for frail). Conclusion: Physical frailty is prevalent in patients with ILD and is independently associated with an increased risk of death. Assessment of physical frailty provides additional prognostic value to recognized risk scores such as the ILD-GAP score, and may present a modifiable target for intervention.
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