Talking with caregivers of children living in the community with ventricular assist devices

A VAD is a mechanical pump used to support the functioning of a failing heart. As a pediatric therapy, a VAD is used as a temporary solution for poor heart function, a bridge to transplantation or recovery, or a destination therapy. The goal of this qualitative study was to explore the perspectives of family and professional caregivers of children who are supported by VADs in outpatient settings. Semi‐structured interviews were conducted with 22 caregivers of school‐aged children discharged home on VAD support. Interviews were transcribed, and data were analyzed using qualitative content analysis. Caregivers identified issues facing children on VAD support in the contexts of home, school, and other childhood places including being physically connected to a device; experiencing changes; living a medical life; negotiating restrictions; cost of care; family, kinship, and community; and, present and future living. While a child with a VAD may have much in common with other medically complex children, the technological complications and risks of living with a VAD are uniquely identified by caregivers as an issue, especially when considering the way that children with a VAD are connected to their device—implanted yet exterior, mobile yet restricted, and autonomous yet dependent.     

Essential thrombocytosis and myocardial infarction in an aircrew member: aeromedical concerns

Of essential thrombocytosis (ET) cases, 25% occur in patients younger than 40 yr of age, and are often discovered as an incidental laboratory abnormality. However, the risk for thrombosis remains of concern and needs to be closely evaluated, especially in the aerospace environment. We report on the case of a 40-yr-old, female French military air traffic controller (ATC) admitted for an ST-elevation myocardial infarction. She was a smoker and had no previous medical history of ET. The coronary angiogram showed a thrombus of the left anterior descending coronary artery. She was treated medically with angioplasty and stent. Laboratory data revealed an elevated platelet count (495,000 x mm(-3)), confirmed 6 mo later (645,000 x mm(-3)). The diagnosis of ET was then established. No platelet-lowering therapy was prescribed, aspirin was continued, and this ATC was considered unfit for operational duties. Arterial thrombosis is more frequent than venous in ET, and can affect the whole arterial tree from the microscopic to the main arteries. Thrombosis is unpredictable and, due to abnormalities of the platelet functions and associated cardiovascular risk cofactors, may occur even with an almost normal platelet count. Risk-adjusted therapy is needed, including lifestyle modification to address vascular risk factors, antiplatelet drugs (aspirin), and platelet-lowering agents with their risk of leukomutagenesis. Furthermore, there is no consensus for the prevention of venous thrombosis. The decision for the aeromedical expert is difficult and depends on the specialty of the aircrew member, the type and duration of the mission, the therapeutics used, and the benefit-risk ratio of platelet-lowering agents.     

Changes in employment status in end-stage renal disease patients during their first year of dialysis.

OBJECTIVE: To assess employment status in new end-stage renal disease (ESRD) patients at the start of dialysis and after 1 year, and to determine whether demographic and clinical variables and physical and psychosocial functioning at the start of dialysis are risk factors for loss of employment after 1 year of dialysis. DESIGN: Prospective follow-up study in which 38 of 48 Dutch dialysis centers participate. PATIENTS: 659 patients who had started on dialysis and who were between 18 and 65 years old were included. Patients were re-examined after 12 months. MAIN OUTCOME MEASURES: Demographic data, physical and psychosocial functioning with the Short-Form Health Survey (SF-36), and data on employment status were obtained using questionnaires. Nephrologists provided the clinical data. RESULTS: At the start of dialysis, 35% of patients were employed, in contrast to 61% of the general Dutch population. Within 1 year, the proportion of employed patients decreased from 31% to 25% of hemodialysis patients, and from 48% to 40% of peritoneal dialysis patients. In patients who were working at the start of dialysis, independent risk factors for loss of work within 1 year were impaired physical and psychosocial functioning [odds ratio physical: 3.4, 95% confidence interval (% CI), 1.0-11.2; odds ratio psychosocial: 4.2, 95% CI, 1.2-14.2]. CONCLUSIONS: As the percentage of employed patients at the start of dialysis is about half the expected percentage, loss of work is an important issue in both predialysis and dialysis patients. Improvements in physical and psychosocial functioning are potentially preventive of loss of work in patients who are employed when they start dialysis.     

Cerebral palsy and stereotactic neurosurgery: long term results.

A retrospective study was performed on a group of 28 patients with cerebral palsy, who had undergone a stereotactic encephalotomy for hyperkinesia or dystonia. The mean postoperative follow up period was 21 years (range: 12-27). Eighteen patients were available for follow up, nine had died, and one could not be traced. A positive result was obtained in eight of the 18 reassessed patients. Determining factors for the outcome were the degree of preoperative disability, side effects of the operation, and ageing since operation. The more favourable results were obtained in patients with hyperkinesia, tremor, and predominantly unilateral dystonia.     

Isolated chondral fractures of the knee

Eighteen patients with isolated chondral fractures of the knee were reviewed to reevaluate the clinical signs and symptoms. No other conditions had been present to account for the symptoms. Most of the patients had significant injuries often involving a flexed knee. All patients had had symptoms and physical findings strongly suggestive of meniscal abnormality. Roentgenographic examinations were noncontributory. The lesions occurred in four distinct patterns. All were full thickness. Many of the lesions occurred on the posterior aspect of a femoral condyle, a location where they could be easily overlooked if the condyle were not examined with the knee in extreme flexion. Abutment of the tibial spine against the medial femoral condyle may be one cause of these injuries. The incidence of isolated chondral fractures was found to be higher than previously reported. A negative arthroscopic meniscal examination in a patient with symptoms and physical findings suggestive of meniscal abnormality should alert the physician to the possibility of an isolated chondral fracture.     

Simultaneous passive and active immunization against hepatitis B: noninterference of hepatitis B immune globulin with the anti-HBs response to reduced doses of heat-inactivated hepatitis B vaccine

The effect of simultaneous administration of hepatitis B immune globulin on the antibody response to a low dose of heat-inactivated hepatitis B vaccine was investigated in 175 health care workers. Subjects were divided into four groups: Groups I and II received 3 monthly injections of a reduced dose (0.6 microgram) of a heat-inactivated hepatitis B vaccine (the usual dose being 3 micrograms) along with 500 IU of hepatitis B immune globulin simultaneously with the first injection of vaccine; Groups III and IV received the vaccine only. In addition, Groups I and III received a final booster injection with 0.6 microgram of the vaccine 8 months after the initial injection. Anti-HBs passively acquired from hepatitis B immune globulin did not interfere with the development of an active antibody response to the vaccine: the anti-HBs conversion rates were similar in persons treated with the combined regimen (89%) as in those who received the vaccine only (91%). At 3 and 5 months after the first injection, however, anti-HBs titers in the recipients of vaccine alone were slightly but statistically significantly higher than those of persons who received both hepatitis B immune globulin and vaccine; but at 8 months, this difference was no longer statistically significant. After a booster inoculation at 8 months, the geometric mean titer of anti-HBs increased 7- to 8-fold in antibody-positive vaccinees, regardless of whether hepatitis B immune globulin had been given earlier. Moreover, 6 of 13 nonresponders to the initial three vaccine injections developed anti-HBs after the booster inoculation.(ABSTRACT TRUNCATED AT 250 WORDS)     

Needs,Perceptions and Education in Sarcoidosis: A Live Interactive Survey of Patients and Partners

Objectives

Sarcoidosis is a chronic, multisystem disease with often a major impact on quality of life. Information on unmet needs of patients and their partners is lacking. We assessed needs and perceptions of sarcoidosis patients and their partners.

Methods

During patient information meetings in 2015 and 2017 in the Erasmus University Medical Center, we interviewed patients and partners using interactive voting boxes. Patients responded anonymously to 17 questions. Answers were projected directly on the screen in the room.

Results

210 patients and 132 partners participated. Sarcoidosis has a subjective significant impact on lives of both patients and partners. The vast majority of patients and partners feel regularly misunderstood because of the general unawareness of sarcoidosis. Many patients and partners experience anxiety. Three-quarters of patients would like to see more attention and support for their psychological problems. Additionally, more supportive care for partners of sarcoidosis patients is warranted. Interactive interviewing was considered educational (91%) and pleasant (84%).

Discussion

This study improves awareness of needs and perceptions of patients with sarcoidosis and their partners. Sarcoidosis leads to anxiety and psychological distress and impairs well-being of patients and their partners. Attention for psychological support, better disease education, and more supportive care for partners is warranted.