1 40 2 Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource 2020 Oncology List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month Oncology 2020 List URL Address <a href="http://doi.org/10.1097/ncc.0000000000000721" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1097/ncc.0000000000000721</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Using Patient-Reported Outcomes to Measure Symptoms in Children With Advanced Cancer Publisher An entity responsible for making the resource available Cancer Nursing Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource cancer; oncology; pediatric cancer; symptoms; patient-reported outcomes Creator An entity primarily responsible for making the resource Montgomery K E; Raybin J L; Ward J; Balian C; Gilger E; Murray P; Li Z Description An account of the resource 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. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1097/ncc.0000000000000721" target="_blank" rel="noreferrer noopener">10.1097/ncc.0000000000000721</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Balian C Cancer Cancer Nursing Gilger E Li Z Montgomery K E Murray P Oncology Oncology 2020 List Patient-reported Outcomes Pediatric Cancer Raybin J L Symptoms Ward J Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource 2020 Oncology List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month Oncology 2020 List URL Address <a href="http://doi.org/10.1111/jspn.12316" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1111/jspn.12316</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Comparison of child self-report and parent proxy-report of symptoms: Results from a longitudinal symptom assessment study of children with advanced cancer Publisher An entity responsible for making the resource available Journal for Specialists in Pediatric Nursing Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource pediatric; childhood cancer; symptoms; advanced cancer Creator An entity primarily responsible for making the resource Montgomery K E; Vos K; Raybin J L; Ward J; Balian C; Gilger E A; Li Z Description An account of the resource 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. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1111/jspn.12316" target="_blank" rel="noreferrer noopener">10.1111/jspn.12316</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Advanced Cancer Balian C Childhood Cancer Gilger E A Journal for Specialists in Pediatric Nursing Li Z Montgomery K E Oncology 2020 List Pediatric Raybin J L Symptoms Vos K Ward J