[show abstract][hide abstract] ABSTRACT: Improvements in treatment and management for pediatric central nervous system (CNS) tumors have increased survival rates, allowing clinicians to focus on long-term sequelae, including sleep disorders. The objective of this study was to describe a series of CNS tumor survivors who had sleep evaluations that included polysomnography (PSG) with attention to sleep disorder in relation to the tumor site.
We report on 31 patients who had retrievable reports including an overnight PSG; 17 also underwent multiple sleep latency tests (MSLT) to characterize their sleepiness.
Mean age at tumor diagnosis was 7.4 years, mean age at sleep referral 14.3 years, and a mean time between tumor diagnosis and sleep referral of 6.9 years. The most common tumor location was the suprasellar region, the most common reason for sleep referral was excessive daytime sleepiness (EDS), and the most common sleep diagnosis was obstructive sleep apnea (n = 14) followed by central sleep apnea (n = 4), hypersomnia due to medical condition (n = 4), and narcolepsy (n = 3). Twenty-six of the 31 subjects were obese/overweight, and among those with the concurrent complaint of EDS, the mean sleep latency on MSLT was 3.16 minutes, consistent with excessive sleepiness.
Suprasellar region tumor survivors who are obese or overweight are more likely to have complaints of EDS and are at greater risk of sleep-disordered breathing. Sleep-related symptoms may not be recognized and referral initiated until years after CNS diagnosis. A periodic and thorough sleep history should be taken when caring for CNS tumor survivors.
Pediatric Blood & Cancer 05/2012; 58(5):746-51. · 2.35 Impact Factor
[show abstract][hide abstract] ABSTRACT: In a previous study, we conducted telephone interviews with parents 6 to 10 months after their child's death from cancer, using open-ended questions to identify the type and frequency of cancer-related symptoms that most concerned them during the last week of their child's life. Because the parents identified many clinically striking symptoms (n=109) that were not of most concern to them, we conducted a secondary analysis of these interviews (48 mothers and four fathers of 52 patients) to identify descriptive factors associated with the parents' level of concern. Six descriptive factors were associated with symptoms of most concern and 10 factors with symptoms not of most concern. Ten of these 16 factors occurred in both categories, indicating that clinicians should directly query parents to identify the symptoms that concern parents the most. Six factors differed between the two categories, and only one (the continuous distress caused by a symptom that is unrelieved) was unique to the category of symptoms of most concern. Five factors (symptom present for at least one week, symptom not seen as remarkable by the parent or causing no distress to the child, symptom well managed, symptom improved, and symptoms for which the parent felt adequately prepared) were unique to the category of symptoms not of most concern. By inquiring about symptoms of most concern and factors that influence parental concern, clinicians may be better able to direct care efforts to reduce patients' and parents' distress and support parents during the difficult end-of-life period.
Journal of pain and symptom management 04/2010; 39(4):627-36. · 2.42 Impact Factor
[show abstract][hide abstract] ABSTRACT: Parents of terminally ill children with cancer frequently ask clinicians when their child will die. Such information helps parents prepare for the child's death. To identify how parents perceived when their child's cancer-related death would occur, we conducted a secondary analysis of telephone interviews with 49 bereaved parents 6-10 months after their child's death to extract their descriptions of this occurrence. The parents knew in advance that their child was going to die, but they described when their child's death would occur in three different ways: anticipated (parents observed changes that alerted them that death was imminent; n=22, 52.4%), surprising (parents were surprised that their child died on that particular day; n=13, 31.0%), and overdue (parents had been waiting for the end of their child's apparent suffering; n=7, 16.7%). These categories did not differ by patients' diagnosis, sex, or location of death but differed slightly by symptom patterns. Parents who reported the occurrence of their child's death as surprising reported fewer symptom changes on the last day of their child's life, compared with the last week of life, than did the parents in the other two categories. These findings indicate that parents of children with terminal cancer can perceive when their child's death would occur very differently: Some are surprised, whereas others feel they have waited too long for their child's release from suffering. Clinicians can use these descriptions and the associated symptom patterns to help families prepare for their child's last week and last day.
Journal of pain and symptom management 10/2009; 38(4):561-7. · 2.42 Impact Factor
[show abstract][hide abstract] ABSTRACT: Studies of symptoms in children dying a cancer-related death typically rely on medical chart reviews or parental responses to symptom checklists. However, the mere presence of a symptom does not necessarily correspond with the distress it can cause the child's parents. The purpose of this study was to identify the cancer-related symptoms that most concerned parents during the last days of their child's life and the strategies parents identified as helpful with their child's care.
Sixty-five parents of 52 children who had died a cancer-related death within the previous 6 to 10 months participated in telephone interviews. Eligibility criteria included being the parent or guardian of a child aged 0 to 21 years who had died within the previous 6 to 10 months after being treated at a pediatric cancer center, having been with their child during the last week of the child's life, speaking English, being willing to participate, and having access to a telephone.
Eighteen symptoms of concern were identified as occurring during their child's final week and final day of life. The most frequently reported symptoms at both times included changes in behavior, changes in appearance, pain, weakness and fatigue, and breathing changes. The proportion of reported symptoms did not differ according to patient gender, disease, or location of death (intensive care, elsewhere in the hospital, or home). The most helpful strategies used by health care professionals to assist the child or parents included giving pain and anxiety medications, spending time with the child or family, providing competent care, and giving advice.
This knowledge can guide professionals in preparing parents for the symptoms that a child imminently dying of cancer is likely to experience and in providing care that will be helpful to parents.
[show abstract][hide abstract] 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.
Western Journal of Nursing Research 07/2007; 29(4):448-65. · 1.22 Impact Factor
[show abstract][hide abstract] ABSTRACT: Improved laboratory techniques now allow a more sensitive detection of leukemia cells at designated intervals throughout therapy. Using flow cytometry and polymerase chain reaction, it is possible to detect 1 leukemic cell among 10(4) normal cells (1 leukemia cell in 10,000 normal cells), representing a 100-fold greater sensitivity than morphological examination in acute lymphoblastic leukemia (ALL). Recently, it has been shown that the molecular presence of persistent acute lymphoblastic leukemia at the end of remission therapy is a poor indicator of clinical outcome. Now similar studies are being performed in acute myeloid leukemia (AML). While the sensitivity using flow cytometry is less in AML than in ALL (able to detect 1 leukemic cell among 1000 normal cells in AML), persistent or minimal residual AML provides the clinician guidance with future treatment recommendations. Minimal residual disease (MRD) is now considered an important indicator response of disease response to treatment. As such, MRD once considered a research variable is now influencing treatment decisions. Therefore, it is imperative that the nurse have an understanding of the newer techniques to study residual leukemia and their clinical implications for patients and their families.
[show abstract][hide abstract] ABSTRACT: Approximately 2,200 children and adolescents die a cancer-related death each year in the United States; of these, almost 90% will die while experiencing 2 to 8 troubling symptoms. With improved symptom control and end-of-life care, these patients might suffer less before they die and their survivors might experience fewer or less intense adverse physical and mental conditions secondary to their bereavement. The focus of this article is on five key areas related to end of life where research is critically needed; (a) the characteristics of cancer-related death and the profiles of survivorship in bereaved family members and health care providers, (b) the trajectory of dying in children and adolescents and a comparison of care delivery preferred by the family and that actually delivered, (c) end-of-life decision making, (d) the financial costs of a child or adolescent dying a cancer-related death and associated policy making, and (e) outcomes of symptom-directed or bereavement interventions. Knowing the characteristics of cancer-related deaths in children and adolescents will help researchers and clinicians develop and test effective interventions related to symptom management, decision making, and availability of care delivery models that match the dying child's needs and preferences. Such interventions could also contribute to the highest quality and cost-effective care being provided to the bereaved survivors.
[show abstract][hide abstract] ABSTRACT: In pediatric oncology nursing, and across practice disciplines in general, clinical research serves as the cornerstone for improving patient care. Historically, advances made in the care and cure of childhood cancer have stemmed directly from clinical research. The developments of new research questions are varied in their origin--some questions are based on previous work that leads logically to the next question, some are based on a clinical problem that requires more immediate attention, and then there are those that arise from an individual clinical experience. This last category provides clinicians with a poignant reason to search for answers on how to provide the most optimal care for all future patients. As the number of advanced practice nurses in pediatric oncology increases, there is the likelihood of an increased pursuit of clinical research. This article describes how one clinician's experience with dying children resulted in the pursuit of answers to clinical research questions. By reflecting on clinical practice and incorporating our practice in the development of research questions, we can improve the quality of care provided to all children with cancer.