April Sykes

Patients’ and Parents’ Needs, Attitudes, and Perceptions About Early Palliative Care Integration in Pediatric Oncology

Importance Early palliative care integration for cancer patients is now touted as the optimal care model, yet significant barriers often prevent its implementation. A perceived barrier, especially for pediatric oncology patients, is the notion that patients and their families may not need or want palliative care involvement early in the disease trajectory. Objective To determine the perception of symptom burden early in treatment and assess attitudes toward early integration of palliative care in pediatric oncology patient-parent pairs. Design, Setting, and Participants Novel but pretested survey tools were administered to 129 patient-parent dyads of hospital-based pediatric oncology ambulatory clinics and inpatient units between September 2011 and January 2015. All patient participants were aged between 10 and 17 years and were diagnosed as having an oncologic condition 1 month to 1 year before enrollment. Both the patient and the parent in the dyad spoke English, and all participating parents provided written informed consent. A convenience sample was used for selection, with participants screened when otherwise presenting at a participating site. A total of 280 eligible participants were approached for study inclusion, 258 of whom were enrolled in the study (92.1% positive response-rate). Main Outcomes and Measures Degree of perceived suffering from early symptom-related causes, attitudes toward early palliative care integration, and patient-parent concordance. Statistical analysis included descriptive statistics, calculation of concordance, McNemar test results, and Cochran-Armitage trend test results. Results Of the 129 patients in the dyads, 68 were boys, and 61 girls; of the 129 parents, 15 were men, and 114 women. Patients reported the following symptoms in the first month of cancer therapy: nausea (n = 109; 84.5%), loss of appetite (n = 97; 75.2%), pain (n = 96; 74.4%), anxiety (n = 77; 59.7%), constipation (n = 69; 53.5%), depression (n = 64; 49.6%), and diarrhea (n = 52; 40.3%). A large proportion of those reporting suffering indicated substantial suffering severity from specific symptoms (ie, a great deal or a lot) including nausea, 52.3% (57 of 109), loss of appetite, 50.5% (49 of 97), constipation 30.4% (21 of 69), pain 30.2% (29 of 96), anxiety 28.6% (22 of 77), depression 28.1% (18 of 64), and diarrhea 23.1% (12 of 52). Few children and parents expressed opposition to early palliative care involvement (2 [1.6%] and 8 [6.2%]) or perceived any detrimental effects on their relationship with their oncologist (6 [4.7%] and 5 [3.9%]), loss of hope (3 [2.3%] and 10 [7.8%]), or therapy interference (3 [2.3%] and 2 [1.6%], respectively). Intradyad concordance was low overall: 26% to 29% for exact concordance and 40% to 69% for agreement within 1 response category. Significant differences in patient-parent attitudes toward aspects of early palliative care included child participants being more likely than their parents (40.3% [n = 52] vs 17.8% [n = 23]) to indicate that palliative care would have been helpful for treating their symptoms (P < .001). Conclusions and Relevance Pediatric oncology patients experience a high degree of symptom-related suffering early in cancer therapy, and very few patients or parents in this study expressed negative attitudes toward early palliative care. Our findings suggest that pediatric oncology patients and families might benefit from, and are not a barrier to, early palliative care integration in oncology.

Adolescents\' preferences for treatment decisional involvement during their cancer

This qualitative study investigated the medical decision‐making preferences of adolescent oncology patients and the parental and clinician behaviors that adolescents report to be supportive of their preferred level of decision‐making involvement.

Going straight to the source: A pilot study of bereaved parent-facilitated communication training for pediatric subspecialty fellows

Medical trainees consistently report suboptimal instruction and poor self‐confidence in communication skills. Despite this deficit, few established training programs provide comprehensive, pediatric‐specific communication education, particularly in the provision of “bad news.” To our knowledge, no programs currently use bereaved parent educators to facilitate communication training for pediatric subspecialty trainees.

Patient-controlled analgesia at the end of life at a pediatric oncology institution

Patient controlled anesthesia (PCA) is increasingly used to manage pain in pediatric cancer patients and is important in the treatment of escalating pain at the end of life. The description of the use of opioid PCA in this population has been limited.

Feasibility of Pegylated Interferon in Children and Young Adults With Resected High-Risk Melanoma.

Pegylated interferon α‐2b (IFN α‐2b) improves disease‐free survival in adults with resected stage III melanoma. We conducted a study to determine the feasibility and safety of incorporating pegylated IFN α‐2b as adjuvant therapy in the treatment of children and adolescents with high‐risk melanoma. Pharmacokinetic studies of IFN α‐2b and neuropsychological and quality of life (OL) assessments were performed.

Illness and end-of-life experiences of children with cancer who receive palliative care

The field of pediatric palliative oncology is newly emerging. Little is known about the characteristics and illness experiences of children with cancer who receive palliative care (PC).

Treatment intensity and symptom burden in hospitalized adolescent and young adult hematopoietic cell transplant recipients at the end of life

Adolescent and young adult (AYA) oncology patients experience many physical and psychological symptoms at the end of life (EOL); however, data on these experiences for AYA patients who have undergone hematopoietic cell transplantation (HCT) remains sparse. We sought to investigate the characteristics of AYA patients aged 15−25 years who received allogeneic HCT and subsequently died while inpatient at our institution between the years 2008 and 2014. A standardized data extraction tool was used to collect information about patient demographics, treatment and symptoms. We found that during this time frame, 34 AYA patients had received HCT and died while inpatient at our institution, 23 (68%) of whom died because of treatment-related complications. Compared with non-HCT AYA oncology patients (n=35), patients who received HCT (n=34) were more likely to have died in the intensive care unit (71% vs 23%, P<0 .0001) and to have received mechanical ventilation (68% vs 17%, P<0.0001) or hemodialysis (53% vs 0%, P<0.0001) in the last 30 days of life. These findings demonstrate that AYA patients who receive allogeneic HCT receive intensive EOL treatment, suggesting that these patients may benefit from early integration of expert interdisciplinary services to prospectively assess and manage distressing symptoms.

The Effectiveness of Trivalent Inactivated Influenza Vaccine in Children with Acute Leukemia

Objective The objective of this study was to determine the effectiveness of trivalent inactivated influenza vaccine (TIV) for the prevention of laboratory‐confirmed influenza and influenza‐like illnesses (ILI) among children and adolescents receiving therapy for acute leukemia. Study design A retrospective review of the demographic and clinical characteristics of 498 patients at a pediatric cancer center who received therapy for acute leukemia during 3 successive influenza seasons (2010–2011 through 2012–2013). Results In 498 patient seasons with a known immunization history (median age, 6 years; range, 1–21), 354 patients (71.1%) were immunized with TIV and 98 (19.7%) received a booster dose of vaccine. Vaccinated and unvaccinated patients had generally similar demographic characteristics. There were no differences in the overall rates of influenza or ILI between vaccinated and unvaccinated patients overall, or in any individual season. There was no difference in the rates of influenza or ILI between patients who received 1 dose of vaccine and those who received 2 doses. Time to first influenza infection and time to first ILI in vaccinated and unvaccinated patients were not different. Conclusion TIV did not protect children and adolescents with acute leukemia against laboratory‐confirmed influenza or ILI. Future prospective studies should assess TIV effectiveness in high‐risk subpopulations and alternative strategies to prevent influenza should be considered in this population.

Evaluation of a fever-management algorithm in a pediatric cancer center in a low-resource setting

In low‐ and middle‐income countries (LMICs), inconsistent or delayed management of fever contributes to poor outcomes among pediatric patients with cancer. We hypothesized that standardizing practice with a clinical algorithm adapted to local resources would improve outcomes. Therefore, we developed a resource‐specific algorithm for fever management in Davao City, Philippines. The primary objective of this study was to evaluate adherence to the algorithm.

Predictors of Location of Death for Children with Cancer Enrolled on a Palliative Care Service

BACKGROUND In the U.S., more children die from cancer than from any other disease, and more than one third die in the hospital setting. These data have been replicated even in subpopulations of children with cancer enrolled on a palliative care service. Children with cancer who die in high-acuity inpatient settings often experience suffering at the end of life, with increased psychosocial morbidities seen in their bereaved parents. Strategies to preemptively identify children with cancer who are more likely to die in high-acuity inpatient settings have not been explored. MATERIALS AND METHODS A standardized tool was used to gather demographic, disease, treatment, and end-of-life variables for 321 pediatric palliative oncology (PPO) patients treated at an academic pediatric cancer center who died between 2011 and 2015. Multinomial logistic regression was used to predict patient subgroups at increased risk for pediatric intensive care unit (PICU) death. RESULTS Higher odds of dying in the PICU were found in patients with Hispanic ethnicity (odds ratio [OR], 4.02; p = .002), hematologic malignancy (OR, 7.42; p < .0001), history of hematopoietic stem cell transplant (OR, 4.52; p < .0001), total number of PICU hospitalizations (OR, 1.98; p < .0001), receipt of cancer-directed therapy during the last month of life (OR, 2.96; p = .002), and palliative care involvement occurring less than 30 days before death (OR, 4.7; p < .0001). Conversely, lower odds of dying in the PICU were found in patients with hospice involvement (OR, 0.02; p < .0001) and documentation of advance directives at the time of death (OR, 0.37; p = .033). CONCLUSION Certain variables may predict PICU death for PPO patients, including delayed palliative care involvement. Preemptive identification of patients at risk for PICU death affords opportunities to study the effects of earlier palliative care integration and increased discussions around preferred location of death on end-of-life outcomes for children with cancer and their families. IMPLICATIONS FOR PRACTICE Children with cancer who die in high-acuity inpatient settings often experience a high burden of intensive therapy at the end of life. Strategies to identify patients at higher risk of dying in the pediatric intensive care unit (PICU) have not been explored previously. This study finds that certain variables may predict PICU death for pediatric palliative oncology patients, including delayed palliative care involvement. Preemptive identification of patients at risk for PICU death affords opportunities to study the effects of earlier palliative care integration and increased discussions around preferred location of death on end-of-life outcomes for children with cancer and their families.