An exploratory qualitative study on factors influencing the level of agreement in symptom reports in child-caregiver dyads.

OBJECTIVES: Clinicians often rely on caregiver proxy symptom reports to treat cancer-related symptoms in children. Research has described disagreement between children's and caregivers' symptom reports. Factors influencing the level of agreement is an understudied area. Thus, this study aimed to examine potential factors contributing to the level of agreement between symptom reports provided by children and their caregivers. METHODS: Sixteen child-caregiver dyads participated separately in semi-structured interviews after completing a brief symptom measure independently using an electronic device. Child and caregiver quantitative symptom responses were reviewed in real-time and incorporated into the semi-structured interview. Sample characteristics and the level of agreement between symptom reports were calculated using descriptive statistics. Transcribed participant interviews were analyzed using content analysis. RESULTS: Nearly half of child-caregiver dyads exhibited a moderate (37.5%, n = 6) or low (18.75%, n = 3) level of agreement on the abbreviated symptom measure. Qualitative analysis identified 5 themes: recognizing symptoms, experiencing symptoms, communicating symptoms, re-assessing and treating symptoms, and influencing individual and relationship factors. Influencing individual, including a child's tendencies or personality traits, and relationship factors intersected the other themes, partially explained their symptom perceptions, and served to facilitate or hinder symptom communication. SIGNIFICANCE OF RESULTS: Symptom communication is an important part of the symptom cycle, comprised of symptom recognition, experience, and management. Individual and relational factors may influence discrepancies in symptom perceptions between the child and caregiver. Clinicians and researchers should consider developing interventions to enhance symptom communication and promote collaboration between children and their caregivers to address symptom suffering during cancer treatment.

Building capacity through integration of advanced practice nurses in research.

BACKGROUND: Advanced practice nurses (APNs) are well-positioned to function in research settings, however barriers to their engagement persist. Capacity-building through multisite research opportunities is an important strategy to overcome these barriers. PURPOSE: To describe the benefits and challenges of incorporating APNs in research and discuss opportunities for building capacity for nursing research. METHOD: Grounded in the experience of a nurse-led multisite longitudinal observational descriptive symptom study, field notes representing the research continuum were reviewed and categorized into themes reflecting benefits and challenges. FINDINGS: Uniform benefits of acquiring research knowledge and skills, participating in research activities, and engaging in professional development were experienced among APNs. Limited support for regulatory and research activities, inadequate financial infrastructure, and a perceived lack of value for APNs' professional growth were commonly encountered challenges. DISCUSSION: Establishment of an infrastructure that elevates benefits and mitigates challenges is necessary to effectively incorporate APNs in a research environment, build capacity, and advance nursing science.

Implementing a Pediatric Escape Room Simulation to Improve Student Learning.

BACKGROUND: Escape room simulations are an innovative teaching methodology that may be useful in addressing pediatric-specific content and clinical placement limitations of generalist nursing programs. PROBLEM: This project studied if a pediatric escape room simulation improved students' knowledge and confidence in pediatric nursing to support the development of the pediatric nursing workforce. APPROACH: A pediatric escape room simulation was developed for a large Midwestern university's prelicensure nursing program. Students completed surveys to assess knowledge and confidence in pediatric nursing. Simulation quality was assessed using the Simulation Learning Effectiveness Inventory. OUTCOMES: Students' (N = 37) knowledge and confidence in pediatric nursing concepts significantly increased after the simulation. Students responded positively to the simulation and recommended it be included in the undergraduate curriculum. CONCLUSIONS: The pediatric escape room simulation offers a promising alternative for students to gain pediatric-specific knowledge and confidence for prelicensure nursing programs in the context of limited pediatric clinical placements.

A Midwest Stakeholder Evaluation of an Adolescent and Young Adult Cancer Survivor Needs Assessment Survey.

Purpose: Over 87,000 adolescents and young adults (AYAs) are diagnosed with cancer in the United States each year. Improvement in outcomes in the AYA population has lagged that of both younger and older patients. This decrement may be attributable to several factors, including insufficient supportive care services. Our team modified the Needs Assessment & Service Bridge (NA-SB) tool, utilizing an iterative approach with patient and clinician stakeholders to meet the needs of the AYA population at a large Midwestern Cancer Center. Methods: We recruited a 10-member AYA Advisory Board (AB) from our Cancer Center patients, and met five times over 9 months to discuss supportive care and the NA-SB. We recruited a multidisciplinary group of oncology clinicians to assess content validity and conducted interviews with nine clinician stakeholders to discuss implementation. Results: The AB generated a 59-item-modified NA-SB, retaining most of the original NA-SB items and adding several more. Five items with concerns for relevance and/or clarity were revised to create the final 58-item-modified NA-SB. Priorities for implementation were identified by AB and clinician stakeholders. Conclusions: The modified NA-SB thoroughly reflects supportive care needs of our Midwestern AYA cancer survivors. When implemented, the tool may facilitate patient-care team communication and provide data to prioritize development of new supportive care resources. AYA cancer survivors have unique supportive care needs that are insufficiently addressed by current care models; using the modified NA-SB may help address those needs, leading to improved AYA outcomes.

A Quality Approach to Blinatumomab Delivery in Pediatric Oncology: A Children's Oncology Group Study.

Background: Blinatumomab is a promising immunotherapy agent that has been shown to improve survival outcomes in children diagnosed with relapsed B-lineage acute lymphoblastic leukemia. Expanded use of blinatumomab in the treatment of childhood cancer is expected; however, clinician perspectives regarding administering this agent in healthcare and home settings have not been explored. Method: Semistructured interviews were conducted with clinicians (N = 13) from pediatric institutions across the United States and Canada. Qualitative data were analyzed using a constant comparative analysis three-stage method. Results: Participants were primarily nurses (92%), female (77%), and had greater than 10 years of pediatric oncology experience. The selective code and overarching theme identified was "A quality approach to blinatumomab delivery in pediatric oncology." Clinicians described detailed processes that were created and implemented to promote a common goal of safe blinatumomab administration across the continuum of care. Clinicians shared how they engaged in planning activities and considered a variety of factors prior to and during blinatumomab administration. Clinicians also expressed a need to reflect and evaluate on previous patient experiences to create new or revise existing processes and workflows. Communication was also central to clinicians' work. Clinicians provided recommendations to assist others with blinatumomab administration and offered suggestions for items that could help with implementing future clinical trials containing similar agents. Discussion: Findings suggest nurses are pivotal to establishing processes which support safe administration of immunotherapies, such as blinatumomab, while also considering patient-specific needs and promoting quality of life.

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.

Symptom Adverse Events and Quality of Life of Children With Advanced Cancer: Results From a Longitudinal Study Using the Pediatric Patient-Reported Outcomes-Common Terminology Criteria for Adverse Events.

Background: The presence of poorly controlled symptoms negatively impacts the quality of life (QoL) throughout cancer treatment. The purpose of this multisite study was to explore the relationship between QoL and symptom adverse events (AEs) in children with advanced cancer over 6 months. Method: A prospective and longitudinal descriptive study design was used to collect QoL and symptom AE data from children aged 2 to 18 with advanced cancer. QoL was measured using the Pediatric Quality of Life Inventory (PedsQLTM) Cancer Module 3.0 and symptom AEs were measured using the Pediatric Patient-Reported Outcome-Common Terminology Criteria for AEs (PRO-CTCAEs®). Descriptive statistics were used to describe QoL and symptom AE data. Correlational analyses and generalized linear mixed models were used to examine the relationship between symptom AEs and QoL. Results: Forty-nine children participated in the study. The mean total PedsQLTM score was 73.86 for the sample across all time points. Children diagnosed with a central nervous system (CNS) tumor reported poorer QoL compared to children diagnosed with a hematologic malignancy or non-CNS solid tumor. Symptom frequency AEs of anxiety, pain, nausea, insomnia, hot flashes, and fatigue severity demonstrated the strongest and most significant negative correlation with total QoL scores. Analyses of the relationship between QoL and symptom AEs over time revealed time-specific significant differences with children who experienced frequency AEs of nausea, and anxiety reporting poorer QoL at time point 4 (week 8). Discussion: The Ped PRO-CTCAE® and PedsQLTM can be used to evaluate the relationship between symptom AEs and QoL in practice and in future research.

Exploring Inflammation and Stress as Biological Correlates of Symptoms in Children With Advanced Cancer: A Longitudinal Feasibility Study.

Background: Few studies have examined biomarkers of stress and inflammation as underlying mechanisms of symptoms in adolescents and young adults with cancer. This study determined the feasibility of collecting blood and saliva samples across time, described the range and distribution of biomarkers, and explored the association of biomarkers with symptom adverse events (AEs). Method: This longitudinal, prospective repeated-measures single-site feasibility study recruited N = 10 children (M = 12.5 years) receiving treatment for advanced cancer. Symptom AE data and inflammation (cytokines and C-reactive protein) and physiologic response to stress (salivary cortisol and salivary alpha-amylase) biomarker levels were collected at three time points. Descriptive statistics were used to examine feasibility and acceptability and to summarize symptom AE, stress, and inflammatory biomarker data. A linear regression model was used to determine cortisol diurnal slopes. The relationship between symptom and inflammatory biomarker data was explored and Hedges's g statistic was used to determine its effect size. Results: Participants provided 83% of saliva samples (n = 199/240) and 185 samples were sufficient to be analyzed. Nurses collected 97% (n = 29/30) of blood samples. Participants reported the saliva collection instructions, kits, and reminders were clear and helpful. Insomnia, pain, fatigue, and anxiety demonstrated the most medium and large negative effects with inflammatory markers. Symptom AEs demonstrated the highest number of medium and large negative effects with interleukin-8 and tumor necrosis factor-alpha (-0.53 to -2.00). Discussion: The results indicate longitudinal concurrent collection of symptom and biomarker data is feasible and inflammatory and stress biomarkers merit consideration for inclusion in future studies.

Balancing Protection and Progress in Pediatric Palliative Care Research: Stakeholder Perspectives.

Pediatric palliative care, including end-of-life care, remains a relatively new area of interdisciplinary clinical practice and research. Improving the multifaceted and complex care of children and their families involves research that (1) documents the experiences of children with serious illness, their families, and clinicians; (2) evaluates relationships between contextual factors and health outcomes; and (3) establishes a stronger foundation for child- and family-focused interventions to improve care. Partnership among stakeholders in family-focused research begins from design through conduct of the study. This partnership is the foundation of a dynamic research process that illuminates critical perspectives. We present a hypothetical pediatric palliative study; a qualitative descriptive study of the perspectives of adolescents and young adults with life-limiting illnesses and their parents after a discussion about an end-of-life decision. Pediatric palliative care researchers, institutional review board leaders, and the parent of a child who died comment on how to balance the obligations to improve clinical care and to protect participants in research. Their recommendations include recruiting a wide range of participants, differentiating emotional responses from harm, approaching potential participants as individuals, and seeking feedback from family advisory boards and designated reviewers with content expertise.

Comparison of child self-report and parent proxy-report of symptoms: Results from a longitudinal symptom assessment study of children with advanced cancer.

PURPOSE: This report represents a subanalysis of data from a primary study and addresses a gap in understanding the similarities and differences of symptom reporting between children with advanced cancer and their parents. The objectives of this subanalysis were to (1) compare reports of symptom prevalence, symptom burden, and symptom frequency, severity, and distress between groups of children and adolescents and their parents, and (2) describe concordance of symptom reports within individual child-parent dyads. DESIGN AND METHODS: Forty-six children with relapsed, refractory, or progressive cancer and their parents from five pediatric cancer centers prospectively reported symptoms every 2 weeks for up to 61 weeks. The abbreviated Pediatric Quality of Life and Evaluation of Symptoms Technology-Memorial Symptom Assessment Scales were used to measure symptom prevalence, frequency, severity, and distress. RESULTS: Children and parents reported pain, fatigue, nausea, and sleeping difficulties as the most frequently occurring symptoms. With the exception of shortness of breath, parents reported symptom prevalence more often than children. The differences in parent reports were statistically significant for fatigue, nausea, lack of appetite, feeling nervous, and sadness. Parents reported higher symptom burden scores compared to children for all individual symptoms except shortness of breath. Children reported higher scores for 19 of 32 possible symptom frequency, severity, and distress ratings. Children's scores were higher for frequency and severity, while parents' scores were higher for distress. Sleeping difficulties, pain, nausea, and diarrhea demonstrated the highest concordance, while feeling nervous, sadness, irritability, and fatigue yielded the lowest concordance between children's and parents' symptom reports. PRACTICE IMPLICATIONS: Eliciting the symptom experience from the child, when appropriate, rather than a parent proxy is best practice given evidence supporting the overestimation of symptom prevalence by parents and underestimation of symptom frequency and severity for some symptoms. When proxy raters must be used, pediatric nurses should educate proxy raters regarding symptom assessment, and assess and tend to symptoms that may not exhibit visual cues. Pediatric nurses should conduct a comprehensive symptom assessment and evaluate beyond the presence of symptoms and include an assessment of frequency, severity, and distress for physical and psychological symptoms to optimize symptom management strategies.

Electronic Symptom Assessment in Children and Adolescents With Advanced Cancer Undergoing Hematopoietic Stem Cell Transplantation.

Background/Purpose: Effective symptom assessment and management for children with advanced cancer undergoing hematopoietic stem cell transplantation (HSCT) is critical to minimize suffering. The purpose of this subanalysis was to compare feasibility of electronic data collection data and symptom prevalence, frequency, severity, and distress from children with advanced cancer undergoing HSCT with a non-HSCT cohort. Method: An abbreviated Pediatric Quality of Life and Evaluation of Symptoms Technology Memorial Symptom Assessment Scale was electronically administered every 2 weeks to children with advanced cancer. A subanalysis was conducted for the cohort of children who received autologous or allogeneic HSCT. Results: Forty-six participants completed 563 symptom assessments during the study. However, 11 of these 46 children received HSCT and completed 201 symptom assessments. The median age in the HSCT cohort was 12.7 years, 73% were female, and most children had a hematologic (45%) or solid tumor (45%) malignancy. Pain (35%), nausea (30%), sleeping difficulty (29%), and fatigue (22%) were the most commonly reported symptoms in children receiving HSCT. Children in the HSCT cohort had similar total, subscale, and individual symptom scores compared with children who did not receive HSCT. Certain domains of gastrointestinal symptoms (nausea, lack of appetite, and diarrhea) were higher for children receiving HSCT compared with children with advanced cancer not receiving HSCT (p < .05). Conclusion: Elicitation of patient-reported symptom experiences using electronic methods improves nurses' understanding of the symptom experience for children with advanced cancer undergoing HSCT and may promote timely assessment and treatment of distressing symptoms.

Using Patient-Reported Outcomes to Measure Symptoms in Children With Advanced Cancer.

BACKGROUND: Children with advanced cancer experience symptoms despite access to quality care. Symptom research has previously relied upon retrospective designs and parent proxy rather than prospective measurement with self-report. OBJECTIVE: This study evaluated the feasibility of electronic data collection in children with advanced cancer using self-report of symptom frequency, severity, and distress. METHODS: A multisite prospective cohort design was used for this study. Children who were 7 to 18 years of age and English-speaking and had a diagnosis of advanced cancer were included. Symptom frequency, severity, and level of distress were measured every 2 weeks. RESULTS: Forty-six children completed 563 of 622 (91%) administered electronic symptom assessments. Pain, fatigue, nausea, and sleeping difficulties were the most reported symptoms across all assessments and during the last 12 weeks of life. Symptoms with the highest composite scores included pain, fatigue, nausea, and sleeping difficulties. During the last 12 weeks of life, pain, fatigue, diarrhea, and sleeping difficulties had the highest composite scores. When the domains of frequency, severity, and distress were compared between groups, children reported significantly higher frequency of pain and eating difficulty during the last 12 weeks of life. CONCLUSIONS: Electronic data collection is a feasible way to evaluate the constellation of symptoms. Children with advanced cancer continue to experience physical and psychological symptoms, especially during the last 12 weeks of life despite quality care. IMPLICATIONS FOR PRACTICE: Assessment of symptom domains, including frequency, severity, and distress when symptoms are present may allow clinicians to better understand and manage symptoms of most concern to the patient.

Oncology Nurse Managers' Perceptions of Palliative Care and End-of-Life Communication.

The purpose of this study was to describe pediatric oncology nurse managers' (NMs) perspectives of palliative care/end-of-life (PC/EOL) communication. The study, guided by group-as-a-whole theory and empirical phenomenology, was part of a larger, multisite study aimed at understanding pediatric oncology nurses' experiences of PC/EOL communication. Nurses were assigned to focus groups based on length or type of experience (i.e., nurses with <1, 2-5, or >5 years' work experience and NMs). Eleven NMs from three Midwestern pediatric hospitals with large oncology programs participated in one focus group. The participants' mean years of experience was 15.8 in nursing and 12 in pediatric oncology; 90% had a BSN or higher degree; all had supervisory responsibilities. The authors identified 2,912 meaning statements, which were then analyzed using Colaizzi's method. Findings include NMs' overall experience of "Fostering a Caring Climate," which includes three core themes: (1) Imprint of Initial Grief Experiences and Emotions; (2) Constant Vigilance: Assessing and Optimizing Family-Centered Care; and (3) Promoting a Competent, Thoughtful, and Caring Workforce. Findings indicate that pediatric oncology NMs draw on their own PC/EOL experiences and their nursing management knowledge to address the PC/EOL care learning needs of nursing staff and patient/family needs. NMs need additional resources to support nursing staff's PC/EOL communication training, including specific training in undergraduate and graduate nursing programs and national and hospital-based training programs.

Communication During Palliative Care and End of Life: Perceptions of Experienced Pediatric Oncology Nurses.

BACKGROUND: Communication between patients, families, and healthcare providers is a central component of end-of-life care. Nurse communication during palliative care (PC) and end of life (EOL) is a phenomenon with limited research. It is unclear how the level of nursing experience influences the perspectives of nurses communicating during EOL. OBJECTIVE: The aim of this study is to describe the commonalities of experienced nurses' perceptions of communicating during PC and EOL and perceptions of barriers and facilitators to effective communication. METHODS: This study was part of a larger multisite study that used a qualitative, empirical phenomenology design and represents focus group data gathered from pediatric oncology nurses with more than 5 years of experience or who were advanced practice nurses not involved in the direct evaluation of other nurses. RESULTS: Five core themes with corresponding themes and subthemes were identified. The core themes included (a) Evolution of PC/EOL, (b) Skill of Knowing, (c) Expanded Essence of Caring, (d) Experienced Nurse as Committed Advocate, and (e) Valuing Individual Response to Grief. CONCLUSIONS: Findings reflect how the concept of experience transcended the 5 core themes and captured how experience provided nurses the know-how to fulfill the roles of communication, caring, and advocacy for children and families. IMPLICATIONS FOR PRACTICE: Enhancing nurse communication skills during EOL requires opportunities to gain experience coupled with clinical strategies, such as standardized curricula, simulation, competency-based orientation programs, mentorship, and peer support.