Associations between demographics and quality of life in children in the first year of cancer treatment.

Symptom distress and decreased quality of life (QOL) among children with cancer are well documented. Research is emerging on the child's voice in QOL-symptom reports, but existing QOL questionnaires are burdensome and objective biologic markers are lacking. We examined children's symptoms and QOL from parent and child perspectives and compared the results to one biologic marker (body posture). A cross-sectional secondary analysis of prospective data from children receiving creative arts therapy explored potential associations among demographics with and between QOL measures (PedsQL, Faces Scale, posture). Children (n = 98) ranged in age from 3 to 17 years (M = 7.8) and were in the first year of cancer treatment. No significant associations were found among the child's sex, race/ethnicity, socioeconomic status (SES), or distance from hospital, and total PedsQL. Older age was associated with worse total PedsQL, pain, nausea, worry, and posture (all P < 0.05). Greater worry (ß = 0.51) and worse posture (ß = 0.41) were the QOL variables most strongly correlated with older age. Poorer posture was associated with worse child PedsQL (total score, nausea, treatment anxiety, cognitive) and parent PedsQL (pain, nausea). Worse scores on the Faces Scale, PedsQL, and posture were all correlated (r = 0.21-0.39, all P < 0.05). Interventions to improve QOL could target nausea, worry, and older patients. Accuracy and interpretation of symptom distress in children are problematic. The Faces Scale and posture may be suitable, readily obtained measures of QOL in pediatric oncology that hold promise.

COMPLETE (Communication Plan Early Through End of Life): Development of a Research Program to Diminish Suffering for Children at End of Life.

While overall survival has improved significantly for children with cancer over the past 75 years, cancer remains the leading cause of death from disease among children and adolescents. Further, despite the many advances in medical and nursing care, children with cancer still experience significant physical and emotional suffering over the course of their illness, especially at the end of life (EOL). Children endure significant rates of high-intensity medical interventions (e.g., intubation, intensive care unit admission) at the EOL despite many parents, adolescents, and young adult patients identifying home as their preferred location of death. Hospice care has the potential to ease suffering at the EOL and facilitate home deaths, and yet, most children still die in acute care settings without hospice care. Numerous barriers prevent timely enrollment in hospice among children with cancer who are in the EOL period. This report describes the development and testing of a palliative care/EOL communication intervention designed to overcome some of these barriers and improve EOL outcomes (i.e., earlier hospice enrollment, less use of high-intensity medical interventions, reduced pain and suffering) among children with cancer and their parents (i.e., less emotional distress and uncertainty, improved hope and healthcare satisfaction).

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.

Retrospective analysis of combination carboplatin and vinblastine for pediatric low-grade glioma.

INTRODUCTION: Low-grade glioma (LGG) represent the most common pediatric central nervous system tumor. When total surgical resection is not feasible, chemotherapy is first-line therapy in children. Multiple pediatric LGG chemotherapy regimens have been investigated with variable 2-year event free survival (EFS) rates of 39-69%. To date, treatment of pediatric LGG with a carboplatin and vinblastine (C/VBL) chemotherapy regimen has only been evaluated in a phase 1 dose-finding study. METHODS: A retrospective review of pediatric patients with LGG who were treated with C/VBL at Children's Hospital of Colorado or Akron Children's Hospital from 2011 to 2017 was conducted. Data collected included patient demographics, tumor location, disease response, neurofibromatosis 1 (NF1) status, therapy duration and toxicities. Response to therapy was determined by objective findings on imaging and treating physicians' evaluation. RESULTS: Forty-six patients were identified for analysis, all of whom were chemotherapy-naive. Only five patients treated in this cohort had NF1. BRAF fusion was identified in 65% (22/34) of tested tumors. Best therapy response was partial response in nine patients and stable disease in twenty-five patients. Twelve patients had progressive disease. One-year, 3-year, and 5-year EFS probabilities for all patients were 69.6%, 39.4%, and 34.5%, respectively. Nine patients had admissions for febrile neutropenia and seven patients experienced one delay in chemotherapy due to neutropenia. Only two patients had to discontinue this chemotherapy regimen because of treatment-related toxicities [carboplatin allergy (n = 1) and vinblastine neuropathy (n = 1)]. CONCLUSION: C/VBL achieves similar EFS rates to other single-agent and combination cytotoxic chemotherapy regimens for pediatric LGG with manageable toxicities.

Classification of the acute emetogenicity of chemotherapy in pediatric patients: A clinical practice guideline.

This clinical practice guideline (CPG) provides clinicians with recommendations regarding chemotherapy emetogenicity classification in pediatric oncology patients. This information is critically important for the appropriate selection of antiemetic prophylaxis. Recommendations are based on a systematic review limited to pediatric patients and a framework for classification when antiemetic prophylaxis is provided. Findings of 87 publications informed the emetogenicity classification of 49 single-agent and 13 combination-agent regimens. Information required for the classification of many chemotherapies commonly administered to pediatric patients is lacking. In the absence of pediatric data, consultation of methodologically sound CPGs aimed at adult oncology patients may be appropriate.

Identifying clinical practice guidelines for the supportive care of children with cancer: A report from the Children's Oncology Group.

Providing evidence-based supportive care for children with cancer has the potential to optimize treatment outcomes and improve quality of life. The Children's Oncology Group (COG) Supportive Care Guidelines Subcommittee conducted a systematic review to identify current supportive care clinical practice guidelines (CPGs) relevant to childhood cancer or pediatric hematopoietic stem cell transplant. Only 22 papers met the 2011 Institute of Medicine criteria to be considered a CPG. The results highlight the paucity of CPGs available to pediatric oncology healthcare professionals and the pressing need to create CPGs using current methodological standards.

Maintaining Survival While Improving Quality of Life: An Advanced Practitioner-Led Pilot Feasibility Study to Reduce Radiation Dose in Children With Brain Tumors.

Purpose: Oncology advanced practitioners (APs) are on the front line in treating adverse effects. Among children with brain tumors, treatments such as craniospinal irradiation (CSI) cause neurocognitive injury, endocrinopathies, and ototoxicity. High-dose CSI with concurrent chemotherapy allows high-risk embryonal tumors (non-anaplastic) good survival (70%), but significant distressing effects are commonly treated by APs in multidisciplinary long-term follow-up. The aim of this study was to test feasibility of reducing radiation dose with an AP-led protocol. Methods: An interdisciplinary team developed this pilot study with the primary outcome of fewer than two deaths in 10 patients (80% survival). Secondary outcomes were feasibility of an AP-led treatment protocol and acute/late effects of treatment. The AP held a pioneering role as principal investigator of a tumor treatment study. Exclusion criteria included age less than 3 years and anaplasia. The CSI was reduced from 36 to 24 Gy. All other treatment was standard. Results: Survival rate exceeded the primary outcome threshold (88%); the accrual rate (80%) and follow-up neurocognitive testing rate (75%) were acceptable. Eight children ages 3 to 19 years (M = 8) with tumors of varied molecular subtyping were enrolled. The single death occurred 2.5 years from diagnosis of multiorgan failure (without evidence of tumor). The mean survival is 11 years, with two college and one graduate degrees. Acute and late effects were decreased compared with the higher-dose CSI. Conclusion: APs who treat cancer adverse effects can also conduct clinical prospective studies to maintain survival rates and improve quality-of life-outcomes.

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.

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.

Creative Arts Therapy Among Children With Cancer: Symptom Assessment Reveals Reduced Anxiety.

BACKGROUND: Symptom distress is related to decreased quality of life (QOL) among children with cancer, with high levels of pain, nausea, and anxiety reported. Creative arts therapy (CAT) has been related to improved QOL and symptoms in pediatric oncology, but the quality of evidence is mixed. OBJECTIVE: This article aims to examine the QOL symptom subscales in relation to CAT over time in children during the first year of cancer treatment. METHODS: A secondary analysis of prospective data was performed with linear mixed modeling on 267 observations with predictors of 2 groups: No CAT (n = 18) vs CAT (n = 65). The covariate of time (6 months) was used to explore the CAT relationship with the Pediatric Quality of Life Inventory (PedsQL) symptom subscales (pain and hurt, nausea, procedural anxiety, treatment anxiety, worry, cognitive problems, perceived physical appearance, and communication). RESULTS: Children (n = 83) were between 3 and 17 years old (M = 6), 51.2% female, and 32% minority. All tumor types were represented: liquid (37.3%), solid (24.1%), and central nervous system (38.6%). Reduced child report of procedural anxiety was significantly related to receiving CAT with a medium magnitude of association (adjusted effect size = 0.58, P = .01). CONCLUSION: Creative arts interventions were associated with a longitudinal improvement in anxiety in children with cancer. Further work is needed to target interventions to the appropriate specific burdensome symptoms. IMPLICATION FOR PRACTICE: Pediatric oncology nurses can advocate for CAT as an effective intervention to ameliorate the burdensome procedural anxiety experienced by patients.

Art Unfolds Words: Expressing Hope Through Creative Art Among Adolescents and Young Adults Who Have Advanced Cancer.

Hope's role in the care of adolescents and young adults (AYAs) who have advanced cancer (AC) is not well understood. This study aimed to conceptualize the essence of hope among AYAs who have AC based on their lived experiences and illustrate hope through verbal and artistic depictions of the AYA's lived experiences. Fifteen AYAs, aged 12 to 21 years, diagnosed with AC completed two semistructured interviews to share their lived experiences of hope perspectives in the form of a descriptive narrative and a creative-art outcome. Participants who chose to draw pictures narrated the conceptual meanings based on elements of each picture. A board-certified art therapist performed a post hoc analysis of the drawings and participants' verbatim descriptions of their meanings. Five of the 15 AYA participants created drawings depicting their lived experiences of hope. The artistic process of mapping their cancer journey revealed distinct views of hope through nature landscapes and metaphors. Participants provided titles for their drawings such as "Over the Rainbow," "Growth in the Valley," and "The Light at the End of the Tunnel." The pictures embodied the AYAs' thoughts, perceptions, and lived experiences related to hope and its role during their cancer journey. Drawing is one simple art form that can facilitate an AYA's expression of well-being (including hope) beyond what may be verbally articulated. Creative art should be further researched as a screening tool to assess how AYAs with AC cope with an uncertain future and psychological and/or existential distress symptoms.

Quality of Life Outcomes With Creative Arts Therapy in Children With Cancer.

Introduction: Children with cancer experience distress and decreased quality of life (QOL). Creative arts therapy (CAT) is a therapeutic modality which may improve QOL. This study examined the relationship between CAT and QOL in children and adolescents with cancer. Secondary aims explored relationships between CAT and emotional reactions, resilience, and posture (to investigate future potential as an objective biomarker of QOL). Methods: Children aged 3-18 years undergoing cancer treatments and a parent proxy completed the PedsQL3.0 Cancer Module, Faces Scale for emotional reactions, Resilience Scale in adolescents (>12 years), and an inclinometer to measure thoracic kyphosis before and after CAT. CAT exposure (number of sessions) was recorded. Results: Ninety-eight children with cancer (mean age 7.8 years, range 3-17) and parent proxy were enrolled. Of the 83 participants included in the final analysis, 18 received no CAT, 32 received low dose, and 33 received high dose CAT. A significant improvement in QOL was seen with high dose CAT in (slope change, p = .015), but the overall time by group interaction was not significant. Slope change response patterns suggested that CAT led to improved posture as compared to no CAT (time by group interaction, p = .044). Discussion: CAT may be an effective intervention to improve QOL in this population. Because initial evidence suggests that posture also improves with CAT, further investigation of posture as a potential objective biomarker of QOL is supported. Further study with a randomized controlled trial is warranted.

Does Creative Arts Therapy Improve Distressing Symptoms in Children with Cancer? A Synthesis of Extant Literature.

Introduction: Children with cancer experience symptom distress which has been correlated with decreased quality of life (QOL). Creative arts therapy (CAT) encompasses the therapeutic use of creative arts which may improve QOL among children with cancer by affecting symptoms. Therefore, the research question was asked: Does CAT affect symptoms of pain, nausea, fatigue, anxiety, and mood in children with cancer? Methods: Based on the study question, a comprehensive literature search of PubMed, CINAHL, PsycINFO, and Embase was completed. Inclusion criteria limited articles to specific symptom outcomes in two-group intervention studies in the English language. Selected articles were confirmed for inclusion by the study team, followed by group discussion to develop matrices with levels of evidence based on the Grading of Recommendations Assessment, Development, and Evaluation (Grade) guidelines. Results: Initial searches revealed 1,391 articles, screened to 44 for systematic review. Based on the inclusion criteria, 11 articles remained. Four studies had evidence levels graded as low, three were low to moderate, and four were moderate. Outcomes of mood and anxiety were measured in five studies, pain in four, fatigue in two, and nausea in one study. Discussion: Psychological outcomes were measured more commonly than physical outcomes. Evidence reached a moderate grade in four studies. Summary: Through this synthesis of intervention studies with CAT in children with cancer, improvement in distressing symptoms has potential, but the state of the science for symptom management with CAT could be strengthened for nurses to promote CAT to improve QOL among children with cancer.

Inpatient Pediatric Palliative Care Consult Requests and Recommendations.

INTRODUCTION: Little is known about the requests for and recommendations from inpatient pediatric palliative care (PPC) consults and whether they differ by patient location (ward vs. intensive care unit) or patient type (new vs. established with PPC). METHODS: Single-center, retrospective cohort study comparing PPC consult requests and recommendations for children who received a PPC consult between January 1, 2018 and June 30, 2019. Comparisons were made by patient location and patient type using bivariate statistics. RESULTS: Three hundred twenty-seven PPC encounters were evaluated. Symptoms were more likely to be addressed in consults for ward patients than for intensive care unit patients. Compared with established patients, consults for new patients occurred significantly later in the hospital course and were more likely to be for psychosocial support or goals of care. DISCUSSION: We found variability in PPC consult requests and recommendations that may inform future work and targeted education for primary providers.

Transition From Pediatric and Adolescent HIV Care to Adult HIV Care and the Patient-Provider Relationship: A Qualitative Metasynthesis.

ABSTRACT: Approximately 5 million adolescents (ages 15-24 years) living with HIV will transition to adult care in the next decade. Only half are engaged in care 12 months post-transition. This qualitative metasynthesis aimed to answer: What effect did the patient-provider relationship (PPR) have on adolescent living with HIV transition? What strategies were suggested to develop trusting relationships to promote engagement and retention in care? Primary qualitative studies from PubMed, CINAHL, and EBSCO (January 2008 to December 2019) were identified. Data were analyzed using team-based thematic synthesis techniques and international standards. Fourteen articles with 478 participants from eight countries were included. Four themes emerged: the familial nature of the PPR, stigma as a bond and barrier, the provider knowing the patient and getting to know new providers, and recommendations supporting transition. The PPR is integral. Collaborative strategies used to build new relationships will support autonomy, decrease stigma, and facilitate trust.

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.

Creative Arts Therapy in the Context of Children With Cancer: A Concept Analysis.

Aim: To report an analysis of the concept of creative arts therapy (CAT) in the context of pediatric cancer. Background: Literature supports the intuitive conclusion that creative interventions improve a patient's journey through the cancer trajectory. However, a new definition is needed to encompass CAT and creative expression interventions in order to better understand the concept of creativity in health care, specifically in pediatric oncology. Design: Concept analysis. Data Sources: The scientific databases CINAHL, PsycInfo (Ovid), AMED (Allied and Complementary Medicine), and PubMed were queried for English language research articles published between 2008 and 2018 using the search terms: creative arts therapy and cancer. Method: The Walker and Avant method of concept analysis was implemented. Results: CAT is a broad concept bringing creative arts in a therapeutic manner to children with cancer. Attributes include expression of feelings; creating art, music, or movement; and improvement of symptoms. CAT is frequently measured using quality of life and symptom assessment scales. Antecedents include the diagnosis of cancer, the distress caused by cancer, and a child's willingness to participate in creative activity. Consequences include improved quality of life, improved sense of well-being, decreased psychosocial symptoms, and less cancer pain. Conclusion: The literature supports CAT as a concept that may decrease distress for children with cancer.

How Does Creative Arts Therapy Reduce Distress for Children With Cancer? A Metasynthesis of Extant Qualitative Literature [Formula: see text].

Introduction: As more children survive cancer, attention must be paid to their quality of life (QOL). Integrative therapies are an ideal modality for nurses to advocate for reducing distress and improving QOL for children with cancer. Creative arts therapy is a type of integrative health that may improve QOL in this population. Therefore, the research question was asked, "For children with cancer, what opportunities exist for creative arts therapy to reduce distress?" Method: A metasynthesis of the extant qualitative research was conducted to answer the research question. Seven qualitative studies were identified, which included 162 participants. New themes were identified through rigorous analyzation by the study team of each study as individual data. Results: Four derived analytic themes emerged through the analysis: (a) connection is established through creative expression, (b) coping is facilitated by creative arts, (c) communication is enabled by creative arts interventions, and (d) continuance (the concept of time) is experienced through creative arts. Examples of each theme with subthemes are delineated, including expressive quotes. Summary: Through this qualitative synthesis of studies with creative arts therapy, evocative opportunities to reduce the distress associated with the disease experience are revealed. Nurses are called now to promote creative arts therapy to improve the symptoms in children with cancer.

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.