Imparting the diagnosis of life threatening illness in children.

The parents of children with life threatening or terminal illnesses were interviewed about their experiences of the way in which they were told the diagnosis. The interview was piloted on 25 families and then administered in a semistandardised manner to a further 45 families. Parents were asked how satisfied they were with the initial discussion about the diagnosis: 23 families were satisfied with how much information they were given; 22 with the information concerning prognosis; 20 with the pacing of the information; 33 with who was present; 32 with arrangements for follow up; and 26 were satisfied overall with the initial discussion. Clear patterns emerged about which elements of the discussion parents appreciated or resented. For example, they valued an open, sympathetic, direct, and uninterrupted discussion of the diagnosis in private that allowed sufficient time for them to take the news in and for doctors to repeat and clarify information. They disliked evasive or unsympathetic brief interviews. All parents remembered vividly the manner in which the diagnosis was imparted, and some were still preoccupied with this many years later. Analyses were carried out to test the possibility that reports of satisfaction and dissatisfaction were a function of current depression and anxiety, but no evidence was found for this.     

Mucosal immune responses to infections in infants with acute life threatening events classified as 'near-miss' sudden infant death syndrome

This study examined the hypothesis that dysregulation of mucosal immune responses to respiratory infections is a critical event, which could be causal in respiratory arrest of some previously healthy infants. To examine this hypothesis, a prospective study was undertaken of infants presenting to the emergency department of a major teaching hospital with acute life threatening events (ALTE) of unknown cause and classified as "near-miss" SIDS. Salivary immunoglobulin concentrations were measured on admission and again after 14 days. The salivary immunoglobulins were compared with three control groups: infants with a mild upper respiratory tract infection (URTI); bronchiolitis; and healthy age-matched infants. The salivary IgA and IgM concentrations in the ALTE infants at presentation to hospital indicated a significant mucosal immune response had already occurred, with nearly 60% of the IgA concentrations significantly above the population-based reference ranges. The hyper-immune response was most evident in the ALTE infants with pathology evidence of an infection; 87% of these infants had salivary IgA concentrations on average 10 times higher that the age-related median concentration. The most prevalent pathogen identified in the ALTE infants was respiratory syncytial virus (RSV) (64%). RSV was also identified in all subjects with bronchiolitis. Risk factors for SIDS were assessed in each group. The data indicated that the ALTE infants diagnosed as 'near-miss' SIDS were a relatively homogeneous group, and most likely these ALTE infants and SIDS represent associated clinical outcomes. The study identified exposure to cigarette smoke and elevated salivary IgA concentrations as predictors of an ALTE. The study findings support the hypothesis of mucosal immune dysregulation in response to a respiratory infection in some infants with an ALTE. They provide a plausible explanation for certain SIDS risk factors. The underlying patho-physiological mechanism of proinflammatory responses to infections during a critical developmental period might be a critical factor in infants who have life-threatening apnoea or succumb to SIDS. The study raises the possibility of using salivary IgA to test infants who present with mild respiratory infections to identify a substantial number of infants at risk of developing an ALTE or SIDS, thus enabling intervention management to prevent such outcomes.     

Physicians' and nurses' retention of knowledge and skill after training in cardiopulmonary resuscitation.

Physicians and nurses in a community hospital who successfully completed the standard 1-day training program in basic life support cardiopulmonary resuscitation (CPR) were retested 6 and 12 months after training. Their perceptions of their knowledge of and skill in CPR were recorded along with an account of the roles they had taken in CPR incidents. The physicians and nurses initially had the same level of knowledge of CPR, but the physicians learned significantly more and retained it longer. After training, the nurses participated much more in CPR incidents, limiting themselves to basic life support functions. The physicians'' participation, however, remained at about the same level and was limited to advanced life support functions. By 12 months after training the scores in both groups were similar to the pretraining scores, which suggests that practice with feedback is necessary during the 1-year period before retraining and recertification. It may be that the two groups require different training programs.     

A community training scheme in cardiopulmonary resuscitation.

Community instruction in basic life support and resuscitation techniques has been offered in Brighton Health District since 1978. Classes are held frequently for the general public and businesses, schools, and other organisations. First aid care for unconscious patients, the treatment of respiratory obstruction or failure, and the recognition and management of cardiac arrest is taught in a single two hour session. Over 20 000 people have been taught, up to 40 at a time in multiple groups of six to eight, by lay instructors usually supervised by ambulancemen trained to "paramedic" standards. Fifty four incidents have been reported to us in which techniques learnt in the classes have been implemented. Five patients recovered after first aid support but subsequently did not seek medical treatment. Of the 34 patients reviewed in hospital, at least 20 survived to be discharged. We believe that intervention may have been life saving in 16 instances. The benefit of cardiopulmonary resuscitation for victims who may have been asystolic is, however, difficult to quantify because the outcome without intervention cannot be predicted accurately. Community training in basic life support should be considered in association with ambulances equipped for resuscitation and hospital intensive care and cardiac care units as an integrated service for the victims of sudden circulatory or respiratory emergencies. The results achieved so far in Brighton and in other more advanced schemes, particularly in the United States of America, may encourage other health authorities to adopt similar programmes.     

Detection of antinuclear and antilaminin antibodies in autistic children who received thimerosal-containing vaccines

Autism, a neurodevelopmental disorder, may involve autoimmune pathogenesis. Since mercury is potentially a risk factor for autoimmunity, we conducted a study of mercury-induced antinuclear and antilaminin antibodies in autistic and normal children who had been pre-administered with thimerosal-containing vaccines. Laboratory analysis by different immunoassays showed that the serum level of these two autoimmune markers did not significantly differ between autistic and normal children. This finding suggests that the mercury as in thimerosal-containing vaccines is likely not related to autoimmune phenomenon in autism.     

Negative extrathoracic pressure in treatment of respiratory failure in infants and young children.

OBJECTIVE--To assess the efficacy of a newly developed system for applying continuous or intermittent negative (subatmospheric) extrathoracic pressure in respiratory failure. DESIGN--Uncontrolled clinical trials in infants deteriorating or failing to improve despite standard medical treatment. SETTING--Paediatric and neonatal intensive care units and paediatric wards. PATIENTS--88 Infants and young children aged 1 day to 2 years with respiratory failure due to bronchopulmonary dysplasia, the neonatal respiratory distress syndrome, bronchiolitis, myopathy, the congenital hypoventilation syndrome, pneumonitis, and postoperative phrenic nerve palsy. At the start of treatment 59 were receiving greater than or equal to 50% inspired oxygen and 40 positive airway pressure ventilation. INTERVENTION--Treatment was provided within purpose built Perspex chambers of appropriate size. The chamber incorporated safe and effective latex neck seals; facilities for access, monitoring, and observation; and a heater to control the ambient air temperature. MAIN OUTCOME MEASURES--Inspired oxygen concentration and carbon dioxide pressure before application of negative extrathoracic pressure and two and 48 hours afterwards; duration of treatment; and final outcome (discharge home or death). RESULTS--While arterial oxygen saturation was maintained at constant values 75 infants showed reductions in inspired oxygen concentrations (range 4-50%, median 15%) two hours after starting treatment and 74 showed reductions at 48 hours (2-79%, median 20%). Of 59 infants who had carbon dioxide pressure measured before and after starting negative extrathoracic pressure, 21 showed a reduction (range 0.6-8.9 kPa, median 2.0), 30 no change (+/- 0.5 kPa), and eight a rise (range 0.6-5.1 kPa, median 2.1). In 28 patients extubation was facilitated, 54 patients were discharged home, where six continued treatment, and 34 died. Treatments lasted for between two and 236 days (median 13 days). CONCLUSION--Negative pressure respiratory support is a non-invasive yet effective treatment for respiratory failure. It may avoid the need for intubation, reduce the pathophysiological consequences of positive airway pressure ventilation, and aid extubation.     

Interobserver reliability of skinfold measurements in infants and young children

Interobserver reliabilities were determined for the triceps, biceps, subscapular, suprailiac, and abdominal skinfolds in 77 children, 9-24 months of age. Technical errors of measurement (replicate variances) and coefficients of variation were compared to data on 12-17-year-olds from the U.S. Health Examination Survey (HES) to 2.5-7-year-old Guatamalan children. Of the five skinfolds, the between-observer variation was not significantly different from zero in four; in the case of the biceps fold, F-ratio was significant at p less than .01. Errors of measurement are less for these data than for the HES or Guatemalan studies. This difference is attributed to the larger means of the older children and youth, as well as to the greater error of measurement shown to exist for larger skinfolds.     

End of life care in HIV-infected children who died in hospital

The aim of this study was to evaluate terminal care among hospitalized children who died of HIV/AIDS. The design was a retrospective chart review of the terminal hospitalization. The setting was a public, secondary and tertiary children's hospital in Cape Town, South Africa (SA). The patients included a consecutive series of in-patient deaths from HIV-related causes. The main outcome measures included: documentation of do not resuscitate (DNR) orders and comfort care plans, intensity of diagnostic and therapeutic interventions in last 24 hours of life, and presence of pain and distress in last 48 hours of life. The results are based on the review of 165 out of 167 in-patient deaths. Of those, 79% of patients died in general wards. Median age and length of stay were 4 months and 6 days respectively. A total of 84% of patients had a DNR order. DNR orders appeared simultaneously in only 41% of medical and nursing notes. Only 44% of patients had a comfort care plan. Pain and distress in the last 48 hours was documented in 55% of patients who died in the general wards. Respiratory symptomatology and painful skin conditions accounted for most discomfort. Half (36/72) the patients with pain and distress, including 16 with a comfort care plan, received no analgesia. Conclusions drawn found that, despite clinical uncertainty, doctors made tough end of life decisions that included DNR orders and comfort care plans. The lower rate of comfort care plans suggests doctors had difficulty making the transition from curative to palliative care. Many comfort care plans were incoherent and included interventions unlikely to promote patients' comfort. In light of the HIV/AIDS pandemic in SA, reforms are needed to integrate palliative care within mainstream hospital medicine. However, without adequate human resources including trained interpreters, doctors and nurses will struggle to deliver optimal terminal care in acute hospitals.