High Symptom Burden Predicts Poorer Quality of Life Among Children and Adolescents Receiving Hematopoietic Stem Cell Transplantation or Chimeric Antigen Receptor T-Cell Therapy.

BACKGROUND: Children with cancer and other serious illnesses experience symptom burden during hematopoietic stem cell transplantation and chimeric antigen receptor T-cell therapy, yet limited research has characterized how these symptoms interact with overall quality of life over time. OBJECTIVE: The aim of this study was to examine the longitudinal relationship between symptoms and quality of life in children receiving hematopoietic stem cell transplantation or chimeric antigen receptor T-cell therapy. METHODS: A multisite study design was used to collect symptom and quality of life information at pre-cell infusion and days +30, +60, and +90 from children (N = 140) receiving hematopoietic stem cell transplantation and chimeric antigen receptor T-cell therapy. A longitudinal parallel process model was used to characterize the relationship between symptoms and quality of life. RESULTS: Children (mean age, 8.4 years) received allogeneic transplant (57.9%), autologous transplant (25.7%), or chimeric antigen receptor T-cell therapy (16.4%). Symptom prevalence was highest at baseline (>50%) for pain, fatigue, nausea, vomiting, and low appetite. Quality of life scores were worse at baseline (mean [SD], 69.5 [15.8]) and improved by 10 points by day +90. The longitudinal model indicated high symptom prevalence at baseline predicted worse quality of life at both baseline and day +90. CONCLUSIONS: Children felt worse early in the treatment trajectory and improved by day +90. The level of symptom burden predicted the overall quality of life at all time points. IMPLICATIONS FOR PRACTICE: Children experiencing high symptom burden should receive frequent assessment and enhanced symptom management throughout the treatment trajectory to mitigate negative impacts on quality of life.

Quality of Outpatient Pediatric Palliative Care Telehealth: A Retrospective Chart Review.

CONTEXT: Studies suggest the feasibility and acceptability of telehealth in outpatient pediatric palliative care. However, there is a need for data that describes the implementation and quality of telehealth, relying on objective and validated measures. OBJECTIVE: We sought to compare the provision of pediatric palliative care by delivery method. METHODS: We conducted a retrospective electronic health record review of patients seen by our outpatient palliative care team over a two-year period. Demographic, diagnostic, and health utilization data as well as encounter characteristics were compared between patients seen in person (IP), through telehealth (TH), and both (IP/TH). RESULTS: Three hundred ninety-four patients were evaluated with 889 outpatient pediatric palliative care encounters. Non-English speaking patients were less likely to receive palliative care through TH, as were patients without active patient portals. Median follow-up time was longer for patients seen through TH or IP/TH. Patients with malignancies were seen more frequently IP while children with neurologic diagnoses, technology dependence, and a higher number of complex chronic conditions were seen more frequently via TH. Health outcomes, end of life quality metrics, and encounter-level quality indicators were similar across care delivery methods. Review of systems, pain, and mood management, and advance care planning happened more frequently IP while goals of care discussions and medical decision-making happened more through TH. CONCLUSION: Despite differences in patients seen and palliative interventions provided in person compared to telehealth, health outcomes, and quality indicators were similar across care delivery methods. These data support the continued practice of telehealth in palliative care and highlight the need for equity in its evolution.

Parent Psychological Distress Is Associated with Symptom Burden and Health-Related Quality of Life in Children and Adolescents Undergoing Stem Cell Transplantation or Chimeric Antigen Receptor T Cell Therapy.

Hematopoietic stem cell transplantation (HSCT) and chimeric antigen receptor T cell therapy (CAR-T) are potentially curative treatment options for children with life-threatening conditions but can result in a high symptom burden, poor health-related quality of life (HRQoL), and parent psychological distress. In this study we investigated the associations over time between parent psychological distress and symptom burden and HRQoL in children undergoing HSCT or CAR-T. This multisite study used a longitudinal, repeated-measures design. English- and Spanish-speaking parents and their children age 2 to 18 years with planned HSCT or CAR-T therapy were eligible. Parents completed self-report measures of psychological distress (Beck Anxiety and Depression Inventories and Perceived Stress Scale) at 4 time points: before cell infusion and days +30, +60, and +90 after cell infusion. The Memorial Symptom Assessment Scale and PedsQL Cancer Module were administered to children (parent proxy for younger children) at corresponding time points. A symptom cluster called parent distress was created from each parent outcome using exploratory factor analysis. Longitudinal parallel process modeling was used to study the relationship between parent distress and child symptoms and HRQoL over time. A total of 140 child-parent dyads (280 participants) were enrolled across 4 sites. The mean age of the children was 8.4 ± 5 years, 56.4% were male, and most had an underlying diagnosis of malignancy (72.9%). The parents had a mean age of 39 ± 8.1 years, and the majority were mothers (80.7%),. Parent distress was consistently higher than normative means generated from nonclinical samples of adults. A high frequency of suicidal ideation was reported by parents (38.5% at baseline, 37% at day +30, 27.4% at day +60, and 33.6% at day +90). A significant relationship between parent distress and child HRQoL and symptoms was observed at baseline and through day +90. Our findings suggest that parents experience clinically relevant psychological distress throughout their child's HSCT or CAR-T therapy, and that this parent distress is associated with child HRQoL and symptom scores. Increased psychoeducational support tailored to address parental psychological distress is needed and has the potential to positively impact the child's HRQoL and symptoms.

Factors Influencing Family Burden in Pediatric Hematology/Oncology Encounters.

PURPOSE: Caring for a child with cancer or hematologic disease places unique stress on a family unit. Families' subjective experience of this care-related burden mediates the relationship between cost and health-related outcomes. While financial costs are well described for families of pediatric hematology/oncology patients, it is unclear how cost and other factors each contribute to families' overall experience of care-related burden. This study identifies and groups the challenges that families report and describes their association with overall reported burden. METHODS: This mixed-methods analysis of a cross-sectional single-center study was conducted via structured, self-administered questionnaire provided to inpatient and outpatient caregivers of pediatric hematology/oncology patients. Respondents rated their perception of burden associated with that day's medical encounter on a 5-point Likert scale. The questionnaire included an open-ended prompt for caregivers about areas they deemed most burdensome. Primary themes were extracted and categorized. RESULTS: A total of 278 outpatient and 42 inpatient caregivers participated. Six thematic categories emerged: logistics, life disruption, care delivery system, parking, financial burden, and emotional burden. Outpatient caregivers reported more burden than inpatient caregivers for the first three categories, while inpatient caregivers reported more burden for the last three. Salient subthemes associated with higher and lower overall burden were identified in each theme category. CONCLUSIONS: These data establish theme categories for future study of caregiver-perceived burden in pediatric hematologic/oncologic encounters, demonstrate that certain components of cost contribute disproportionately to caregivers' overall sense of care-related burden, and identify areas within each of the 6 burden categories that can be best targeted to alleviate caregiver burden.

Perspectives on Cancer Pain Assessment and Management in Children.

OBJECTIVE: To report evidence regarding pain assessment and management for children and adolescents receiving treatment for cancer. DATA SOURCES: Published research and clinical guidelines. CONCLUSION: Children and adolescents experience multiple sources of pain across the cancer continuum. They require developmentally relevant approaches when assessing and managing pain. This review suggests that consideration of the developmental stage and age of the child are essential in both pain assessment and pain management. IMPLICATIONS FOR NURSING PRACTICE: Pediatric oncology nurses play a key role in developmentally appropriate pain assessment, identification of potential strategies to manage pain, and delivery of pharmacologic and nonpharmacologic therapies.

Human suffering: the need for relationship-based research in pediatric end-of-life care.

Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must understand the multiple dimensions of the person who suffers and the complex set of relationships within the natural and the clinical social networks. Pediatric oncology research must include appropriately designed studies with sound methodology and measurement strategies to test and refine theories that account for the link between human relationships and the relief of suffering. Studies should assess as many theoretical models as possible, including the social network, perceptions of support, and provider-recipient interactions; their physical, emotional, behavioral, and spiritual concomitants; and their impact on medical decision making and health outcomes. Future directions in pediatric end-of-life care research must also include evaluating social and spiritual interventions developed on the basis of solid hypotheses regarding the positive and negative influences of interpersonal dynamics on the processes that mediate between suffering and well-being.

Pain management for the child with cancer in end-of-life care: APON position paper.

Although there have been major advances in the treatment of childhood cancer with an overall survival rate of more than 70%, cancer continues to be the leading cause of death in children resulting from disease. In 1998, 2,500 children in the United States died of cancer-related causes. Each year cancer kills more children than asthma, diabetes, cystic fibrosis, congenital anomalies, and acquired immunodeficiency syndrome combined. The Association of Pediatric Oncology Nurses (APON) is the leading professional organization for nurses caring for children and adolescents with cancer and their families. The highest standards of nursing practice are achieved through education, research, certification, advocacy, and affiliation. It is the position of APON that pain in the child dying of cancer can be effectively managed. This can be accomplished by making the prevention and alleviation of pain a primary goal, partnering with the patient and parents, and aggressively using appropriate pharmacologic and non-pharmacologic interventions. The pediatric oncology nurse has an essential role in the child's pain management at the end of life through nursing assessment, identifying expected outcomes, and performing and evaluating interventions.