To assess parental decision-making preferences in the high-stress environment of the pediatric intensive care unit and test whether preferences vary with demographics, complex chronic conditions, prior admissions to the pediatric intensive care unit, and parental positive and negative emotional affect.Institutional Review Board-approved prospective cohort study conducted between December 2009 and April 2010.Pediatric intensive care unit at The Children's Hospital of Philadelphia.Eighty-seven English-speaking parents of 75 children either <18 yrs of age or cognitively incapable of making their own decisions and who were hospitalized in the pediatric intensive care unit for >72 hrs.Parents were interviewed in person and completed standardized instruments that assessed decision-making preferences and parental affect.The majority of parents in the analytic sample preferred shared decision making with their doctors (40.0%) or making the final decision/mostly making the final decision on their own (41.0%). None of the child and parent characteristics in the analytic sample were found to be significantly associated with the top decision-making preference. Using shared decision making as a reference category, we determined whether positive or negative affect scores were associated with preferring other decision-making options. We found that parents with higher positive affect were less likely to prefer self/mostly self (autonomous decision making). Increased positive affect was also associated with a reduced likelihood of preferring doctor/mostly doctor (delegating the decision), but not to a significant degree.Most parents in the pediatric intensive care unit prefer their role in decision making to be shared with their doctor or to have significant autonomy in the final decision. A sizeable minority, however, prefer decision-making delegation. Parental emotional affect has an association with decision-making preference.
Many children continue receiving chemotherapy after there is no realistic hope for cure. One factor that influences parental decisions to pursue medical therapies is physician preference. To date, no studies have described pediatric oncologists' perspectives and practices regarding palliative chemotherapy (PC).We surveyed via email pediatric oncologists practicing in the U.S who are members of the Children's Oncology Group to achieve the following objectives: (1) Describe pediatric oncologists treatment considerations regarding the use of PC. (2) Assess treatment considerations that influenced pediatric oncologists' therapy recommendations for their most recent patient receiving PC. There were 422 participants (40.8%) who completed the survey.The most important factors considered by pediatric oncologists when prescribing PC were the toxicity of the chemotherapy (4.90 mean SD = 0.36 utilizing 5 point scale with 1 = not important to 5 = very important), the preferences of the family (4.57; SD = 0.60), and the potential to decrease symptoms arising from tumor burden (4.42; SD = 0.65). These treatment considerations were not as important when PC was prescribed for their most recent patient. Similarly, the chief aims in prescribing PC were not achieved for recent patients receiving PC. For their most recent patient who received PC, 40.8% believe this treatment was primarily for parental wishes.According to 80.2% of pediatric oncologists completing the survey, some patients receive chemotherapy beyond medical benefit and 40.8% of these oncologists have prescribed PC for the purpose of parental wishes to a recent patient. The chief aims in prescribing palliative chemotherapy were not achieved for recent patients.
This chapter outlines a public health framework for paediatric palliative and hospice care to facilitate the focus on key public health concerns and to understand better how they apply in paediatric palliative and hospice care. It includes assessing patterns of health and disease in populations, promoting wellness, understanding the social determinants of health, considering nested levels of influence and impact, and improving quality while promoting equity.
Background: Operation Smile is a non-profit organization that provides free cleft lip and cleft palate repair to impoverished children worldwide. To date, no longitudinal studies of satisfaction among these patients or their families have been published.Objectives: In a cohort of parents of children receiving cleft lip/cleft palate repair, to assess parental satisfaction and fulfillment of expectations.Methods: A prospective cohort study with pre-operative and 6-month post-operative interviews of parents of 45 patients of the Operation Smile mission in Tegucigalpa, Honduras, 2007 was undertaken. Patients were recruited from a total of 96 who underwent surgery, with follow-up data available for 22 of them (49% of participants). Pre-operative interviews concerned expectations regarding surgery, and post-operative interviews addressed surgical outcomes and satisfaction.Results: Mean patient age was 4 years (range 3 months to 17 years); 51% underwent isolated cleft lip repair, and 49% cleft palate repair. This was the first surgery for 53%, the remainder having had previous surgery on one to six occasions. Pre-operatively, parents expressed expectations that speech (n = 26), appearance (n = 21) or feeding (n = 17) would improve. Among the 22 re-interviewed 6 months after surgery, two had experienced minor and one major post-operative complications. Only 14 of 22 had all their pre-operative expectations fulfilled. All except one parent reported satisfaction with the surgery.Conclusion: Despite unmet expectations, parents of children who received medical mission surgery for cleft lip or cleft palate express satisfaction with outcomes. Other factors are likely to influence expressions of satisfaction in this setting.
To characterize the effect of corticosteroid exposure on clinical outcomes in children hospitalized with new-onset Henoch-Schönlein purpura (HSP).We conducted a retrospective cohort study of children discharged with an International Classification of Diseases, Clinical Modification code of HSP between 2000 and 2007 by using inpatient administrative data from 36 tertiary care children's hospitals. We used stratified Cox proportional hazards regression models to estimate the relative effect of time-varying corticosteroid exposure on the risks of clinical outcomes that occur during hospitalization for acute HSP.During the 8-year study period, there were 1895 hospitalizations for new-onset HSP. After multivariable regression modeling adjustment, early corticosteroid exposure significantly reduced the hazard ratios for abdominal surgery (0.39 [95% confidence interval (CI): 0.17-0.91]), endoscopy (0.27 [95% CI: 0.13-0.55]), and abdominal imaging (0.50 [95% CI: 0.29-0.88]) during hospitalization.In the hospital setting, early corticosteroid exposure was associated with benefits for several clinically relevant HSP outcomes, specifically those related to the gastrointestinal manifestations of the disease.
Objectives: Technologies designed to optimally maintain older people as they age in their desired places of residence are proliferating. An important step in designing and deploying such technologies is to determine the current use and familiarity wi
Background: The study of how the quality of pediatric end-of-life care varies across systems of health care delivery and financing is hampered by lack of methods to adjust for the probability of death in populations of ill children. Objective: To develop a prognostication models using administratively available data to predict the probability of in-hospital and 1-year postdischarge death. Methods: Retrospective cohort study of 0–21 year old patients admitted to Pennsylvania hospitals from 1994–2001 and followed for 1-year postdischarge mortality, assessing logistic regression models ability to predict in-hospital and 1-year postdischarge deaths. Results: Among 678,365 subjects there were 2,202 deaths that occurred during the hospitalization (0.32% of cohort) and 860 deaths that occurred 365 days or less after hospital discharge (0.13% of cohort). The model predicting hospitalization deaths exhibited a C statistic of 0.91, with sensitivity of 65.9% and specificity of 92.9% at the 99th percentile cutpoint; while the model predicting 1-year postdischarge deaths exhibited a C statistic of 0.92, with sensitivity of 56.1% and specificity of 98.4% at the 99th percentile cutpoint. Conclusions: Population-level mortality prognostication of hospitalized children using administratively available data is feasible, assisting the comparison of health care services delivered to children with the highest probability of dying during and after a hospital admission.
