Importance Having a child with a major birth defect can be a life-changing and stressful event that may be associated with higher cardiovascular disease (CVD) risk, yet the long-term burden of CVD for the child’s mother is unknown.Objective To assess…
A longitudinal feasibility study regarding quality of life and interventions for patients with advanced cancer or AIDS and their family caregivers was conducted to determine issues related to their recruitment and retention and to obtain pilot data…
Using the data accumulated in 2002-2004 with the D0 detector in proton-antiproton collisions at the Fermilab Tevatron collider with a center-of-mass energy of 1.96 TeV, the branching fractions of the decays B --> D0(1)(2420)mu+ vmuX and B -->…
OBJECTIVES: Little is known regarding the assessment and treatment of symptoms during end-of-life (EOL) care for children. This study was conducted to describe the circumstances surrounding the deaths of hospitalized terminally ill children,…
The Memorial Symptom Assessment Scale (MSAS) is a new patient-rated instrument that was developed to provide multidimensional information about a diverse group of common symptoms. This study evaluated the reliability and validity of the MSAS in the…
BACKGROUND: Sleep-disordered breathing (SDB) and respiratory failure (RF) are complications of acid maltase deficiency (AMD), a rare hereditary myopathy. OBJECTIVE: To define the relationship between lung and respiratory muscle function, to establish…
BACKGROUND: Children with complex chronic conditions (CCCs) might benefit from pediatric supportive care services, such as home nursing, palliative care, or hospice, especially those children whose conditions are severe enough to cause death. We do…
Objectives. —To improve end-of-life decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying.Design. —A 2-year prospective observational study (phase I) with 4301 patients followed by a 2-year…
Context Parents' understanding of prognosis or decision making about palliative care for children who die of cancer is largely unknown. However, a more accurate understanding of prognosis could alter treatment goals and expectations and lead to more…
