Congenital diaphragmatic hernia (CDH) is a life-threatening anomaly with a mortality rate of approximately 40-50%, depending on case selection. It has been suggested that new therapeutic modalities such as nitric oxide (NO), high frequency oxygenation (HFO) and extracorporal membrane oxygenation (ECMO) might decrease mortality associated with pulmonary hypertension and the sequelae of artificial ventilation. When these new therapies indeed prove to be beneficial, a larger number of children with severe forms of CDH might survive, resulting in an increase of CDH-associated complications and/or consequences. In follow-up studies of infants born with CDH, many complications including pulmonary damage, cardiovascular disease, gastro-intestinal disease, failure to thrive, neurocognitive defects and musculoskeletal abnormalities have been described. Long-term pulmonary morbidity in CDH consists of obstructive and restrictive lung function impairments due to altered lung structure and prolonged ventilatory support. CDH has also been associated with persistent pulmonary vascular abnormalities, resulting in pulmonary hypertension in the neonatal period.
Focus group interviews were conducted with 14 adolescents with asthma to explore self-management behavior, in particular with regard to adherence behavior. In addition, the adolescents discussed their feelings about having asthma, gave insight into how they evaluate the provided health care, and made recommendations for healthcare providers and for the development of patient education materials. The majority of participants did not take their prophylactic asthma medication regularly, and were rather late in starting to use their bronchodilator. They were sometimes fed up with having asthma. Moreover, the majority of participants were not always frank in telling their pediatrician how they managed their asthma. Finally, they found it essential that information about asthma should be given personally and not by means of leaflets, and recommended that healthcare providers should use audio-visual aids to illustrate what they are explaining. The results of the focus group interviews have been used for the development of an intervention program which aims at enhancing adherence in adolescents with asthma.
Congenital diaphragmatic hernia (CDH) is associated with pulmonary hypoplasia and pulmonary hypertension. The objective of this study was to assess pulmonary function and exercise capacity and its early determinants in children and adolescents born with high-risk CDH (CDH-associated respiratory distress within the first 24 h) and to explore the relationship of these findings with CDH severity.Of 159 patients born with high-risk CDH, 84 survived. Of the 69 eligible patients, 53 children (mean¡SD age 11.9¡3.5 yrs) underwent spirometry, lung volume measurements and maximal cardiopulmonary exercise testing (CPET). Results of the pulmonary function tests were compared with those from a healthy control group matched for sex, age and height.CDH survivors had a significantly lower forced expiratory volume in 1 s (FEV1), forced vital capacity (FVC), FEV1/FVC, maximum mid-expiratory flow and peak expiratory flow when compared with healthy controls. The residual volume/total lung capacity ratio was significantly higher. Linear regression analysis showed that gastro-oesophageal reflux disease was an independent determinant of reduced FEV1 and FVC. CPET results were normal in those tested.High-risk CDH survivors have mild to moderate pulmonary function abnormalities when compared with a healthy matched control group, which may be related to gastro-oesophageal reflux disease in early life. Exercise capacity and gas exchange parameters were normal in those tested, indicating that the majority of patients do not have physical impairment.
A randomised controlled trial, involving 112 adolescents with asthma, and a 2-year follow-up was conducted to assess the impact of an intervention programme aimed at enhancing adherence to asthma medication. This programme had a duration of 1 year and consisted of an experimental group which received usual care from a paediatrician, but additionally attended individual and group sessions with an asthma nurse, and a control group which received usual care only. The programme aimed at enhancing adherence by stimulating a positive attitude, increasing feelings of social support, and enhancing self-efficacy. At baseline, and after 12-month (T1) and 24-month (T2) follow-up, the participants filled in questionnaires which were based on the concepts of the ASE-model. Adherence was assessed by self-report (range: 1-10) at the same points in time. After 12 months, 97 adolescents (87%) were available for follow-up, decreasing to 86 adolescents (77%) after 24 months. No statistically significant differences were found between the control and the experimental group, except for one. At T2, self-reported adherence appeared to be statistically significantly higher in the experimental group. In conclusion, there seems to have been no substantial effect of the intervention programme.
BackgroundLong‐term impairment of pulmonary function in trachea‐esophageal fistula (TEF) patients is, at least in part, commonly ascribed to gastro‐esophageal reflux disease (GERD). The objective of this study was to examine the independent effects of the underlying condition and GERD on cardiopulmonary function.MethodsCardiopulmonary function of TEF patients, who had (severe) GERD (s‐GERD) requiring antireflux surgery (TEF + GERD, n = 11) and TEF patients who did not have s‐GERD (group TEF–GERD, n = 20) were compared with control patients who had isolated s‐GERD requiring antireflux surgery (group GERD, n = 13). All patients performed spirometry, lung volume measurements, measurement of diffusion capacity and maximal cardiopulmonary exercise testing (CPET).ResultsMean age of the participants was 13.8 ± 2.7 (group TEF + GERD). 13.2 ± 2.9 (group TEF–GERD), and 14.7 ± 1.5 years (group GERD). FVC and TLC were significantly lower in patients with TEF (with and without s‐GERD) when compared to patients with isolated s‐GERD. Most pulmonary function parameters were similarly affected in both TEF groups, but FEV1 was lower in the TEF + GERD group than in the TEF–GERD group. Cardiopulmonary exercise parameters were similar in all groups.ConclusionsTEF patients had restrictive lung function impairment when compared to patients with isolated s‐GERD. This difference may be due to several causes, including thoracotomy. FEV1 was lower in TEF + GERD when compared to TEF–GERD indicating that GERD may affect large airway function in TEF patients. Other differences between TEF patients with and without s‐GERD were not significant, suggesting only a minor role for GERD. Pediatr Pulmonol. 2011; 46:348–355. © 2010 Wiley‐Liss, Inc.
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