Conducting end-of-life studies in pediatric oncology
ABSTRACT Improving our ability to prevent or diminish suffering in dying children and adolescents and their families is dependent on the completion of high-quality pediatric end-of-life studies. The purpose of this article is to provide useful evidence-based strategies that have been used to implement and complete clinically useful pediatric end-of-life studies in oncology. The article describes specific peer-review and methodological challenges and links those to evidence-based solutions. The challenges and solutions described in this article are from eight end-of-life studies involving pediatric oncology patients. It is hoped that the solutions described here will benefit others in their efforts to implement pediatric end-of-life studies so that clinically useful findings will result and will improve the care of dying children and adolescents.
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ABSTRACT: In neonates, the course of illness is often unpredictable and symptom assessment is difficult. This is even truer at the end of life (EOL). Time to death can take minutes to days, and ongoing management of the infant is needed during the time between discontinuation of life-sustaining treatment and death to ensure that the infant remains free of pain and suffering. The symptoms experienced by neonates as they die, as well as best ways to treat those symptoms, are understudied. The purpose of this study was to examine symptoms exhibited by neonates at the EOL and the treatments used to manage those symptoms as documented in the medical record during the last 24 hours of life.Advances in Neonatal Care 10/2014; 15(1). DOI:10.1097/ANC.0000000000000132
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ABSTRACT: Recruitment to paediatric palliative care research is challenging, with high rates of non-invitation of eligible families by clinicians. The impact on sample characteristics is unknown. To investigate, using mixed methods, non-invitation of eligible families and ensuing selection bias in an interview study about parents' experiences of advance care planning (ACP). We examined differences between eligible families invited and not invited to participate by clinicians using (1) field notes of discussions with clinicians during the invitation phase and (2) anonymised information from the service's clinical database. Families were eligible for the ACP study if their child was receiving care from a UK-based tertiary palliative care service (Group A; N = 519) or had died 6-10 months previously having received care from the service (Group B; N = 73). Rates of non-invitation to the ACP study were high. A total of 28 (5.4%) Group A families and 21 (28.8%) Group B families (p < 0.0005) were invited. Family-clinician relationship appeared to be a key factor associated qualitatively with invitation in both groups. In Group A, out-of-hours contact with family was statistically associated with invitation (adjusted odds ratio 5.46 (95% confidence interval 2.13-14.00); p < 0.0005). Qualitative findings also indicated that clinicians' perceptions of families' wellbeing, circumstances, characteristics, engagement with clinicians and anticipated reaction to invitation influenced invitation. We found evidence of selective invitation practices that could bias research findings. Non-invitation and selection bias should be considered, assessed and reported in palliative care studies. © The Author(s) 2014.Palliative Medicine 12/2014; 29(3). DOI:10.1177/0269216314560803 · 2.85 Impact Factor