Health-related quality of life of young people with long-term illnesses before and after transfer from child to adult healthcare.

BACKGROUND: The numbers of children with long-term illnesses surviving into adulthood and transferring from child to adult services has increased dramatically in the last 30 years. This study aimed to examine health-related quality of life pre- and post-transfer from child to adult healthcare for young people with three long-term illnesses. METHODS: A total of 217 young people with cystic fibrosis, congenital heart defects or diabetes attending child and adult hospital services in Dublin, Ireland completed a questionnaire survey. Multiple linear regression was used to identify predictors of five dimensions of health-related quality of life pre- and post-transfer. RESULTS: Post-transfer young people with congenital heart disease and diabetes reported significantly lower physical well-being than their pre-transfer counterparts. Pre-transfer young people with cystic fibrosis reported significantly lower physical well-being than those with diabetes, but there was no significant difference post-transfer. Pre-transfer females reported lower scores than males on the Psychological Well-being and Autonomy and Parent Relation dimensions; however, these differences disappeared post-transfer. Higher maternal overprotection scores were associated with significantly lower scores on the Psychological Well-being, Autonomy and Parent Relation, and Social Support and Peers dimensions, regardless of transfer status. CONCLUSIONS: Disease group, gender and maternal overprotection were predictors of health-related quality of life pre- and post-transfer from child to adult healthcare. Transition programmes should promote self-management and discourage parental overprotection.

The experiences and impact of transition from child to adult healthcare services for young people with Type 1 diabetes: a systematic review.

INTRODUCTION: Despite the transition between child and adult services for young people with Type 1 diabetes mellitus being a high-risk period, little is known about the impact of healthcare transition upon young people. METHODS: A systematic review was conducted using PubMed, PsycINFO, CINAHL and EMBASE. Papers published between January 2001 and June 2014 that examined the impact or experiences of healthcare transition in young people with Type 1 diabetes were included. Data were extracted by two independent reviewers and integrated by narrative synthesis. RESULTS: A total of 8990 citations were reviewed and 43 studies were included in the review, 24 of which explored the impact of transition and 24 examined experiences of transition. There were mixed results in terms of the change in glycaemic control and diabetes-related hospitalizations, but all studies assessing attendance found worse attendance post-transition. Data regarding experiences reported that young people and parents experienced greater difficulty in accessing and maintaining diabetes health care. Young people were required to develop independent self-management and self-advocacy skills to navigate the transition and adult health care, but some were inadequately prepared for this. CONCLUSIONS: Although the impact of healthcare transition on outcomes for young people with Type 1 diabetes is unclear due to the paucity of high-quality studies, transition appears to be associated with decreased clinic attendance. There is some preliminary evidence of a positive impact of structured transition programmes. Experiences of healthcare transition illuminate the barriers to smooth transitions and the need for better integration and continuity of care.

Decreased use of neonatal extracorporeal membrane oxygenation (ECMO): how new treatment modalities have affected ECMO utilization.

OBJECTIVE: Over the last decade, several new therapies, including high-frequency oscillatory ventilation (HFOV), exogenous surfactant therapy, and inhaled nitric oxide (iNO), have become available for the treatment of neonatal hypoxemic respiratory failure. The purpose of this retrospective study was to ascertain to what extent these modalities have impacted the use of neonatal extracorporeal membrane oxygenation (ECMO) at our institution. METHODS: Patients from 2 time periods were evaluated: May 1, 1993 to November 1, 1994 (group 1) and May 1, 1996 to November 1, 1997 (group 2). During the first time period (group 1), HFOV was not consistently used; beractant (Survanta) use for meconium aspiration syndrome (MAS), persistent pulmonary hypertension of the newborn (PPHN), and pneumonia was under investigation; and iNO was not yet available. During the second time period (group 2), HFOV and beractant treatment were considered to be standard therapies, and iNO was available to patients with oxygenation index (OI) >/=25 x 2 at least 30 minutes apart, or on compassionate use basis. Patients were included in the data collection if they met the following entry criteria: 1) OI >15 x 1 within the first 72 hours of admission; 2) EGA >/=35 weeks; 3) diagnosis of MAS, PPHN or sepsis/pneumonia; 4) <5 days of age on admission; and 5) no congenital heart disease, diaphragmatic hernia, or lethal congenital anomaly. RESULTS: Of the 49 patient in group 1, 21 (42.8%) required ECMO therapy. Of these ECMO patients, 14 (66.6%) had received diagnoses of MAS or PPHN. Only 3 of the patients that went on to ECMO received beractant before the initiation of bypass (14.3%). All ECMO patients in group 1 would have met criteria for iNO had it been available. Of all patients in group 1, 18 (36.7%) were treated with HFOV, and 13 (26.5%) received beractant. Of the 47 patients in group 2, only 13 (27.7%) required ECMO therapy (compared with group 1). Of these ECMO patients, only 5 (38.5%) had diagnoses of MAS or PPHN, with the majority of patients (61.5%) requiring ECMO for sepsis/pneumonia, with significant cardiovascular compromise. Only 5 of these ECMO patients, all outborn, did not receive iNO before cannulation because of the severity of their clinical status on admission. Of all patients in group 2, 41 (87.2%) were treated with HFOV (compared with group 1), 42 (89.3%) received beractant (compared with group 1), and 18 (44.7%) received iNO. CONCLUSIONS: The results indicate that ECMO was used less frequently when HFOV, beractant and iNO was more commonly used. The differences in treatment modalities used and subsequent use of ECMO were statistically significant. We speculate that, in this patient population, the diagnostic composition of neonatal ECMO patients has changed over time.

Lobar lung transplantation as a treatment for congenital diaphragmatic hernia.

The mortality rate for infants severely affected with congenital diaphragmatic hernia (CDH) remains high despite significant advances in surgical and neonatal intensive care including delayed repair and extracorporeal membrane oxygenation (ECMO). Because of the increasingly successful experience with single-lung transplantation in adults; this approach has been suggested as a potential treatment for CDH infants with unsalvageable pulmonary hypoplasia. The authors report on a newborn female infant who was the product of a pregnancy complicated by polyhydramnios. At birth, she was found to have a right-sided CDH and initially was treated with preoperative ECMO, followed by delayed surgical repair. Despite the CDH repair and apparent resolution of pulmonary hypertension, the infant's condition deteriorated gradually after decannulation, and escalating ventilator settings were required as well as neuromuscular paralysis and pressor support because of progressive hypoxemia and hypercarbia. A lung transplant was performed 8 days after decannulation, using the right lung obtained from a 6-week-old donor. The right middle lobe was excised because of the size discrepancy between the donor and recipient. After transplantation, the patient was found to have duodenal stenosis and gastroesophageal reflux, which required duodenoduodenostomy and fundoplication. The patient was discharged from the hospital 90 days posttransplantation, at 3 1/2 months of age. Currently she is 24 months old and doing well except for poor growth. This case shows the feasibility of single-lung transplantation for infants with CDH, and the potential use of ECMO as a temporary bridge to transplantation. Lobar lung transplantation allowed for less stringent size constraints for the donor lung.

Significantly improved peripheral intravenous catheter performance in neonates: insertion ease, dwell time, complication rate, and costs.

A prospective, randomized, controlled study was performed in neonates in an intensive care nursery to compare the performance of a peripheral intravenous catheter made of Aquavene material (test catheter) with that of a conventional peripheral catheter made of Teflon material (control catheter). Aquavene is a newly developed biomaterial that softens and expands on contact with body fluids. A total of 105 catheters (50 test and 55 control) were inserted in 63 neonates. The median time to a catheter-related complication was 3.60 days for the test catheters and 1.75 days for the control catheters (p = 0.0007). Infiltration rate for the test catheters was 56% as compared with 78% for the control catheters (p = 0.03). The test catheters provided fewer catheter-related complications (p = 0.006), with 34% of the test catheters reaching end of therapy as compared with 9% of the control catheters (p = 0.004). On average, 1.8 test catheters were used per insertion versus 2.3 control catheters (p = 0.08). The test catheters were rated easier to insert (p = 0.05), with a shorter time required for insertion. Because of improved performance, cost savings were realized with the test catheters after the first day of therapy, even though the per unit cost of the test catheter was greater. These data indicate that the test catheter, made of Aquavene material, is superior to the Teflon catheter for peripheral intravenous therapy in neonates.

Permanent pacemakers: the nurse's role in patient education and follow-up care.

Educating cardiac patients in how to lead an active life after a permanent pacemaker implant presents many challenges for nurses involved in their care. Suitable educational material delivered during both the inpatient and the outpatient phases of care can foster a positive attitude and independence in these patients. Nurses are becoming increasingly independent in their management of the follow-up care of these patients. Guidelines for the assessment of pacemaker function, detection of malfunction, and reprogramming techniques are provided.

Implementing a flow sheet for thrombolytic therapy.

Complete and accurate documentation is necessary for optimal nursing care of patients receiving thrombolytic therapy for acute myocardial infarction. A tool is necessary to facilitate smooth transition and consistent patient care in communication between the emergency department and coronary care unit. The authors have developed a simple flow sheet to be used at the bedside for a clinical research protocol involving thrombolytic therapy.