1 40 8 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 2024 Special Edition 3 - Oncology 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 2025 SE1 - Oncology URL Address <a href="http://doi.org/10.1177/08258597241274027" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/08258597241274027</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 Electronic Patient Reported Outcomes Measures (e-PROMs) in Pediatric Palliative Oncology Care: A Scoping Review Publisher An entity responsible for making the resource available Journal of Palliative Care Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; terminal care; female; human; male; newborn; palliative therapy; systematic review; review; interpersonal communication; oncology; quantitative study; health care personnel; groups by age; adolescent; therapy; infant; qualitative research; adverse drug reaction; Web of Science; PsycINFO; patient-reported outcome; special situation for pharmacovigilance; scoping review; electronic health record Creator An entity primarily responsible for making the resource Rusconi D; Basile I; Rampichini F; Colombo S; Arba L; Pancheri ML; Consolo L; Lusignani M Description An account of the resource Objective: Research findings regarding child-centered care and electronic patient reported outcome measures (e-PROMs) within pediatric palliative oncology care reveal an intricate field of study. This study aimed to map innovations in e-PROMs for the pediatric cancer population in palliative care and their impact on symptom management, and communication with healthcare professionals. <br/>Method(s): A scoping review was designed following the Arksey and O'Malley framework. Literature searches were conducted in CINAHL, Embase, MEDLINE, PsycINFO, SCOPUS, and Web of Science. Inclusion criteria targeted children aged 0-18 years with cancer, receiving palliative and/or end-of-life care, and using e-PROMs. <br/>Result(s): Twelve articles were included: 10 quantitative studies, one qualitative study, and one mixed-method study. A narrative synthesis approach was used to summarize the findings, categorized into three sections: (a) technological innovation of e-PROMs in pediatric palliative oncology care; (b) the impact of e-PROMs on symptom monitoring, management, and children's care; (c) the effects of e-PROMs on communication between children and healthcare professionals in pediatric palliative oncology care. <br/>Conclusion(s): e-PROMs have proven effective in empowering children to express their perspectives and actively engage in their end-of-life care. Due to flexible software and devices designed for various age groups, these tools fit seamlessly into children's daily routines and preferences, including the use of play-oriented applications. They facilitate a deeper understanding, and management of physical and emotional symptoms while ensuring care remains child-centered. This emphasizes the importance of preserving the essence of childhood and addressing the unique needs and experiences of young patients in pediatric palliative oncology care. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/08258597241274027" target="_blank" rel="noreferrer noopener">10.1177/08258597241274027</a> 2024 2025 SE1 - Oncology Adolescent Adverse Drug Reaction Arba L Basile I Child Colombo S Consolo L electronic health record Female groups by age Health Care Personnel Human Infant Interpersonal Communication Journal Of Palliative Care Lusignani M Male Newborn Oncology Palliative Therapy Pancheri ML patient-reported outcome Psycinfo Qualitative Research Quantitative Study Rampichini F Review Rusconi D Scoping review special situation for pharmacovigilance Systematic Review Terminal Care Therapy Web of Science 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 2024 Special Edition 3 - Oncology 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 2025 SE1 - Oncology URL Address <a href="http://doi.org/10.1089/jayao.2022.0130" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jayao.2022.0130</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 What Are the Psychosocial Needs of Adolescents and Young Adults with Cancer? A Systematic Review of the Literature Publisher An entity responsible for making the resource available Journal of Adolescent and Young Adult Oncology Date A point or period of time associated with an event in the lifecycle of the resource 2023 Subject The topic of the resource mental health; Adolescent; adult; cancer chemotherapy; female; hematologic malignancy; human; male; social support; coping; terminal care; young adult; systematic review; oncology; review; dying; childhood cancer; depression; occupation; Western Australia; qualitative analysis; health care; follow up; cancer prognosis; personal experience; cancer palliative therapy; cancer patient; distress syndrome; health personnel attitude; symptom; developmental stage; data base; social worker; patient autonomy; side effect; financial management; psychological aspect; patient referral; prospective study; self report; quantitative analysis; cancer diagnosis; cancer therapy; checklist; disease severity; prevalence; adolescent; clinical assessment; fatigue; clinical evaluation; population; questionnaire; demographics; thematic analysis; qualitative research; cancer center; semi structured interview; solid tumor; analgesia; cancer radiotherapy; disease burden; psychosocial intervention; psycho-oncology; emotional support; data extraction; patient-reported outcome; Pediatric Quality of Life Inventory; illness trajectory; study design; psychosocial care; workshop; administrative health data; sexual health; unmet medical need; anticipation; Hospital Anxiety and Depression Scale; malignant neoplasm/rt [Radiotherapy]; social needs; body image; Chinese Version of the Medical Coping Mode Questionnaire; Depression Anxiety and Stress Scale-21; Edmonton Classification System of Cancer Pain; gender identity; mood change; program appropriateness; Short Form 12; Social Support Rating Scale Creator An entity primarily responsible for making the resource Neylon K; Condren C; Guerin S; Looney K Description An account of the resource Adolescents and young adults with cancer (AYACs) have become recognized as a unique group in recent years. The unique developmental context and related challenges of being a young person with a cancer diagnosis can lead to a distinct and diverse set of psychosocial issues. Existing research has attempted to explore these psychosocial needs and challenges and to develop appropriate and individualized interventions. However, the needs of this group remain unmet, with ongoing calls for individualized support. This systematic review addressed the research question, ''what are the psychosocial needs of AYACs aged 15-24 years?.'' PubMed, PsycINFO, and CINAHL databases were searched to identify relevant studies from January 2000 to December 2022 (inclusive). Qualitative, quantitative, and mixed methods designs were included and 29 studies met inclusion criteria. Findings provide an overview of needs from the existing literature and support the idea of a changing constellation of psychosocial needs for AYACs in areas such as identity, relationships, mental health, autonomy, and occupation. The main implications for theory and future research include the importance of the developmental context and consideration of discrepancies in the age range used within the literature to define this group.Copyright © Mary Ann Liebert, Inc. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1089/jayao.2022.0130" target="_blank" rel="noreferrer noopener">10.1089/jayao.2022.0130</a> 2023 2025 SE1 - Oncology administrative health data Adolescent Adult Analgesia Anticipation Body Image cancer center Cancer Chemotherapy Cancer Diagnosis Cancer Palliative Therapy Cancer Patient Cancer Prognosis cancer radiotherapy Cancer Therapy Checklist Childhood Cancer Chinese Version of the Medical Coping Mode Questionnaire clinical assessment clinical evaluation Condren C Coping Data Base data extraction Demographics Depression Depression Anxiety and Stress Scale-21 developmental stage Disease Burden Disease Severity Distress Syndrome Dying Edmonton Classification System of Cancer Pain emotional support Fatigue Female financial management Follow Up Gender Identity Guerin S Health Care Health Personnel Attitude Hematologic Malignancy Hospital Anxiety and Depression Scale Human illness trajectory Journal Of Adolescent And Young Adult Oncology Looney K Male malignant neoplasm/rt [Radiotherapy] Mental Health mood change Neylon K occupation Oncology Patient Autonomy Patient Referral patient-reported outcome Pediatric Quality of Life Inventory Personal Experience Population Prevalence program appropriateness Prospective Study Psycho-Oncology psychological aspect psychosocial care Psychosocial Intervention Qualitative Analysis Qualitative Research quantitative analysis Questionnaire Review Self Report Semi Structured Interview sexual health Short Form 12 Side Effect social needs Social Support Social Support Rating Scale Social Worker solid tumor Study Design Symptom Systematic Review Terminal Care Thematic Analysis unmet medical need Western Australia workshop Young Adult 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 July 2024 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 July List 2024 URL Address <a href="http://doi.org/10.1177/02692163241248735" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163241248735</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 Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carers Publisher An entity responsible for making the resource available Palliative Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource Parents; Child; child; article; female; human; male; Cognition; palliative therapy; content validity; interview; caregiver; parent; Only Child; United Kingdom; outcome assessment; patient-reported outcome; cognition Creator An entity primarily responsible for making the resource Coombes L; Braybrook D; Hardardottir D; Scott HM; Bristowe K; Ellis-Smith C; Fraser LK; Downing J; Bluebond-Langner M; Murtagh FEM; Harding R Description An account of the resource Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. Aim: To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability. Design: Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques. Setting/participants: Children 5-⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites. Results: Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important. Conclusion: Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/02692163241248735" target="_blank" rel="noreferrer noopener">10.1177/02692163241248735</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). 2024 Article Bluebond-Langner M Braybrook D Bristowe K Caregiver Child Cognition content validity Coombes L Downing J Ellis-Smith C Female Fraser LK Hardardottir D Harding R Human Interview July List 2024 Male Murtagh FEM Only Child outcome assessment Palliative Medicine Palliative Therapy Parent Parents patient-reported outcome Scott HM United Kingdom 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 May 2024 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 <a href="https://pedpalascnetlibrary.omeka.net/collections/show/123">May List 2024</a> URL Address <a href="http://doi.org/10.1177/02692163241234797" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163241234797</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 What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders Publisher An entity responsible for making the resource available Palliative Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; adult; article; controlled study; female; human; palliative therapy; sibling; clinical article; interpersonal communication; cross-sectional study; communication barrier; therapy; caregiver; workload; semi structured interview; interview; privacy; patient-reported outcome; outcomes research; implementation science Creator An entity primarily responsible for making the resource Scott HM; Coombes L; Braybrook D; Hardardottir D; Roach A; Bristowe K; Bluebond-Langner M; Fraser LK; Downing J; Farsides B; Murtagh FEM; Ellis-Smith C; Harding R Description An account of the resource Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. Aim(s): To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. Design(s): Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research. Setting/participants: A total of n = 26 children with life-limiting or life-threatening conditions, n = 40 parents/carers, n = 13 siblings and n = 15 health and social care professionals recruited from six hospitals and three children's hospices and n = 12 Commissioners of health services. Result(s): All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional. Conclusion(s): Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.Copyright © The Author(s) 2024. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/02692163241234797" target="_blank" rel="noreferrer noopener">10.1177/02692163241234797</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). 2024 Adult Article Bluebond-Langner M Braybrook D Bristowe K Caregiver Child Clinical Article Communication Barrier Controlled Study Coombes L Cross-sectional Study Downing J Ellis-Smith C Farsides B Female Fraser LK Hardardottir D Harding R Human Implementation Science Interpersonal Communication Interview May List 2024 Murtagh FEM Outcomes Research Palliative Medicine Palliative Therapy patient-reported outcome Privacy Roach A Scott HM Semi Structured Interview Sibling Therapy workload 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 February 2024 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 February List 2024 URL Address <a href="http://doi.org/10.1002/14651858.CD014873.pub2" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/14651858.CD014873.pub2</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 A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments Publisher An entity responsible for making the resource available Cochrane Database of Systematic Reviews Date A point or period of time associated with an event in the lifecycle of the resource 2023 Subject The topic of the resource Humans; Child; child; Adolescent; Quality of Life; human; inflammatory bowel disease; quality of life; Family; chronic pain; social support; family; child parent relation; social work; prognosis; systematic review; sibling; Chronic Pain; Analgesics Opioid; ethnography; Anthropology Cultural; personal experience; cultural anthropology; outcome assessment; health care personnel; wellbeing; health service; disease severity; adolescent; social isolation; headache; analgesia; pediatric patient; abdominal pain; social care; peer group; patient-reported outcome; pain assessment; Review; racism; narcotic analgesic agent; pain severity; fibromyalgia; complex regional pain syndrome; endometriosis; family life; juvenile rheumatoid arthritis; migraine; musculoskeletal pain Creator An entity primarily responsible for making the resource France E; Uny I; Turley R; Thomson K; Noyes J; Jordan A; Forbat L; Caes L; Silveira Bianchim M Description An account of the resource Background: Chronic non-cancer pain in childhood is widespread, affecting 20% to 35% of children and young people worldwide. For a sizeable number of children, chronic non-cancer pain has considerable negative impacts on their lives and quality of life, and leads to increased use of healthcare services and medication. In many countries, there are few services for managing children’s chronic non-cancer pain, with many services being inadequate. Fourteen Cochrane Reviews assessing the effects of pharmacological, psychological, psychosocial, dietary or physical activity interventions for managing children’s chronic non-cancer pain identified a lack of high-quality evidence to inform pain management. To design and deliver services and interventions that meet the needs of patients and their families, we need to understand how children with chronic non-cancer pain and their families experience pain, their views of services and treatments for chronic pain, and which outcomes are important to them. Objectives: 1. To synthesise qualitative studies that examine the experiences and perceptions of children with chronic non-cancer pain and their families regarding chronic non-cancer pain, treatments and services to inform the design and delivery of health and social care services, interventions and future research. 2. To explore whether our review findings help to explain the results of Cochrane Reviews of intervention effects of treatments for children's chronic non-cancer pain. 3. To determine if programme theories and outcomes of interventions match children and their families’ views of desired treatments and outcomes. 4. To use our findings to inform the selection and design of patient-reported outcome measures for use in chronic non-cancer pain studies and interventions and care provision to children and their families. The review questions are:. 1. How do children with chronic non-cancer pain and their families conceptualise chronic pain?. 2. How do children with chronic non-cancer pain and their families live with chronic pain?. 3. What do children with chronic non-cancer pain and their families think of how health and social care services respond to and manage their child’s chronic pain?. 4. What do children with chronic non-cancer pain and their families conceptualise as ‘good’ chronic pain management and what do they want to achieve from chronic pain management interventions and services?. Search methods: Review strategy: we comprehensively searched 12 bibliographic databases including MEDLINE, CINAHL, PsycInfo and grey literature sources, and conducted supplementary searches in 2020. We updated the database searches in September 2022. Selection criteria: To identify published and unpublished qualitative research with children aged 3 months to 18 years with chronic non-cancer pain and their families focusing on their perceptions, experiences and views of chronic pain, services and treatments. The final inclusion criteria were agreed with a patient and public involvement group of children and young people with chronic non-cancer pain and their families. Data collection and analysis: We conducted a qualitative evidence synthesis using meta-ethnography, a seven-phase, systematic, interpretive, inductive methodology that takes into account the contexts and meanings of the original studies. We assessed the richness of eligible studies and purposively sampled rich studies ensuring they addressed the review questions. Cochrane Qualitative Methods Implementation Group guidance guided sampling. We assessed the methodological limitations of studies using the Critical Appraisal Skills Programme tool. We extracted data on study aims, focus, characteristics and conceptual findings from study reports using NVivo software. We compared these study data to determine how the studies related to one another and grouped studies by pain conditions for synthesis. We used meta-ethnography to synthesise each group of studies separately before synthesising them all together. Analysis and interpretation of studies involved children ith chronic non-cancer pain and their families and has resulted in theory to inform service design and delivery. Sampling, organising studies for synthesis, and analysis and interpretation involved our patient and public involvement group who contributed throughout the conduct of the review. We used the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach to assess our confidence in each review finding. We used a matrix approach to integrate our findings with existing Cochrane Reviews on treatment effectiveness for children’s chronic non-cancer pain. Main results: We synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Included studies involved 633 participants. GRADE-CERQual assessments of findings were mostly high (n = 21, 58%) or moderate (n = 12, 33%) confidence with three (8%) low or very low confidence. Poorly managed, moderate or severe chronic non-cancer pain had profound adverse impacts on family dynamics and relationships; family members’ emotions, well-being, autonomy and sense of self-identity; parenting strategies; friendships and socialising; children’s education and future employment prospects; and parental employment. Most children and parents understood chronic non-cancer pain as having an underlying biological cause and wanted curative treatment. However, families had difficulties seeking and obtaining support from health services to manage their child’s pain and its impacts. Children and parents felt that healthcare professionals did not always listen to their experiences and expertise, or believe the child's pain. Some families repeatedly visited health services seeking a diagnosis and cure. Over time, some children and families gave up hope of effective treatment. Outcomes measured within trials and Cochrane Reviews of intervention effects did not include some outcomes of importance to children and families, including impacts of pain on the whole family and absence of pain. Cochrane Reviews have mainly neglected a holistic biopsychosocial approach, which specifies the interrelatedness of biological, psychological and social aspects of illness, when selecting outcome measures and considering how chronic pain management interventions work. Authors' conclusions: We had high or moderate confidence in the evidence contributing to most review findings. Further research, especially into families' experiences of treatments and services, could strengthen the evidence for low or very low confidence findings. Future research should also explore families' experiences in low- to middle-income contexts; of pain treatments including opioid use in children, which remains controversial; and of social care services. We need development and testing of family-centred interventions and services acceptable to families. Future trials of children's chronic non-cancer pain interventions should include family-centred outcomes. Copyright © 2023 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1002/14651858.CD014873.pub2" target="_blank" rel="noreferrer noopener">10.1002/14651858.CD014873.pub2</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). 2023 abdominal pain Adolescent Analgesia Analgesics Opioid Anthropology Cultural Caes L Child Child Parent Relation Chronic Pain Cochrane Database of Systematic Reviews Complex Regional Pain Syndrome cultural anthropology Disease Severity endometriosis ethnography Family Family Life February List 2024 Fibromyalgia Forbat L France E Headache Health Care Personnel Health Service Human Humans inflammatory bowel disease Jordan A juvenile rheumatoid arthritis migraine musculoskeletal pain narcotic analgesic agent Noyes J outcome assessment Pain Assessment Pain Severity patient-reported outcome pediatric patient Peer Group Personal Experience Prognosis Quality Of Life racism Review Sibling Silveira Bianchim M Social Care Social Isolation Social Support Social Work Systematic Review Thomson K Turley R Uny I Wellbeing 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 November 2022 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 November 2022 List URL Address <a href="http://doi.org/10.1097/PCC.0000000000002996" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/PCC.0000000000002996</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 Parent-Reported Experience Measures of Care for Children with Serious Illnesses: A Scoping Review Publisher An entity responsible for making the resource available Pediatric Critical Care Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2022 Subject The topic of the resource  Child Care; Childhood Disease; Chronic Disease; Parental Attitude; Patient-Reported Outcome; Personal Experience; Caregiver Support; Child; Emergency Care; Empowerment; Health Care Delivery; Health Care Quality;Hospice Care; Hospital Care; Hospitalized Child; Human; Long Term Care; Neonatal Intensive Care Unit; Palliative Therapy; Review; Shared Decision Making; Systematic Review; Terminal Care Creator An entity primarily responsible for making the resource Ang FJL; Finkelstein EA; Gandhi M Description An account of the resource OBJECTIVE: This scoping review aimed to: 1) identify parent-reported experience measures (PaREMs) for parents of children with serious illnesses from peer-reviewed literature, 2) map the types of care experience being evaluated in PaREMs, 3) identify and describe steps followed in the measure development process, including where gaps lie and how PaREMs may be improved in future efforts, and 4) help service providers choose a PaREM suitable for their service delivery setting and strategy. DATA SOURCES: Relevant articles were systematically searched from PubMed, CINAHL, and Scopus EBSCOhost databases until June 10, 2021, followed by a manual reference list search of highly relevant articles. STUDY SELECTION: Abstracts were screened, followed by a full-text review using predetermined inclusion and exclusion criteria. DATA EXTRACTION: A standardized data extraction tool was used. DATA SYNTHESIS: Sixteen PaREMs were identified. There were large variances in the development processes across measures, and most have been developed in high-income, English-speaking Western countries. Most only assess the quality of acute inpatient care. Few measures can be used by multiple service providers or chronic care, and many do not capture all relevant domains of the parent experience. CONCLUSION(S): Service providers should integrate PaREMs into their settings to track and improve the quality of care. Given the multidisciplinary nature of pediatric care and the often-unpredictable disease trajectories of seriously ill children, measures that are applicable to multiple providers and varying lengths of care are essential for standardized assessment of quality of care and coordination among providers. To improve future PaREM development, researchers should follow consistent and methodologically robust steps, ideally in more diverse sociocultural and health systems contexts. Future measures should widen their scope to be applicable over the disease trajectory and to multiple service providers in a child's network of care for a comprehensive evaluation of experience.Copyright © 2022 Lippincott Williams and Wilkins. All rights reserved. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1097/PCC.0000000000002996" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002996</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).  Child  Child Care  Chronic Disease  Systematic Review  Terminal Care 2022 Ang FJL Caregiver Support Childhood Disease Emergency Care empowerment Finkelstein EA Gandhi M Health Care Delivery Health Care Quality Hospice Care Hospital care Hospitalized Child Human Long Term Care Neonatal Intensive Care Unit November 2022 List Palliative Therapy Parental Attitude patient-reported outcome Pediatric Critical Care Medicine Personal Experience Review shared decision making 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/10.1177/0269216319886215" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1177/0269216319886215</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 Examining key sociodemographic characteristics of adolescents and young adults with cancer: A post hoc analysis of the Promoting Resilience in Stress Management randomized clinical trial Publisher An entity responsible for making the resource available Palliative Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource child; human; palliative therapy; controlled study; female; major clinical study; male; article; adolescent; school child; young adult; quality of life; total quality management; outcome assessment; randomized controlled trial; treatment outcome; cancer center; coping behavior; socioeconomics; Pediatric Quality of Life Inventory; stress management; cancer specific quality of life; Connor-Davidson Resilience Scale; Hope Scale; patient-reported outcome; Psychological Distress Scale; psychosocial development; environmental resilience; post hoc analysis Creator An entity primarily responsible for making the resource Lau N; Bradford M C; Steineck A; Scott S; Bona K; Yi-Frazier J P; McCauley E; Rosenberg A R Description An account of the resource Background: The "Promoting Resilience in Stress Management" intervention is a skills-based, early palliative care intervention with demonstrated efficacy in adolescents and young adults with cancer. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/0269216319886215" target="_blank" rel="noreferrer noopener">10.1177/0269216319886215</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 Adolescent Article Bona K Bradford M C cancer center cancer specific quality of life Child Connor-Davidson Resilience Scale Controlled Study Coping Behavior environmental resilience Female Hope Scale Human Lau N Major Clinical Study Male McCauley E Oncology 2020 List outcome assessment Palliative Medicine Palliative Therapy patient-reported outcome Pediatric Quality of Life Inventory Post Hoc Analysis Psychological Distress Scale psychosocial development Quality Of Life Randomized Controlled Trial Rosenberg A R School Child Scott S Socioeconomics Steineck A stress management Total Quality Management Treatment Outcome Yi-Frazier J P Young Adult 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 2018 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 2018 List URL Address <a href="http://doi.org/10.1002/cncr.31668" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1002/cncr.31668</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 The Relationship Between Household Income and Patient-Reported Symptom Distress and Quality of Life in Children With Advanced Cancer: A Report From the PediQUEST Study Publisher An entity responsible for making the resource available Cancer Date A point or period of time associated with an event in the lifecycle of the resource 2018 Subject The topic of the resource pain; poverty; palliative therapy; major clinical study; advanced cancer; outcome assessment; cancer patient; cohort analysis; distress syndrome; human; article; child; female; male; quality of life; prevalence; secondary analysis; household income; patient-reported outcome; highest income group; lowest income group Creator An entity primarily responsible for making the resource Ilowite MF; Al-Sayegh H; Ma C; Dussel V; Rosenberg AR; Feudtner C; Kang TI; Wolfe J; Bona K Description An account of the resource Background: Children with advanced cancer experience high symptom distress, which negatively impacts their health-related quality of life (HRQOL). To the authors' knowledge, the relationship between income and symptom distress and HRQOL is not well described. Methods: The Pediatric Quality of Life and Symptoms Technology (PediQUEST) multisite clinical trial evaluated an electronic patient-reported outcome system to describe symptom distress and HRQOL in children with advanced cancer via repeated surveys. The authors performed a secondary analysis of PediQUEST data for those children with available parent-reported household income (dichotomized at 200% of the Federal Poverty Level and categorized as low income [<$50,000/year] or high income [>=$50,000/year]). The prevalence of the 5 most commonly reported physical and psychological symptoms was compared between groups. Multivariable generalized estimating equation models were used to test the association between household income and symptom distress and HRQOL. Results: A total of 78 children were included in the analyses: 56 (72%) in the high-income group and 22 (28%) in the low-income group. Low-income children were more likely to report pain than high-income children (64% vs 42%; P=.02). In multivariable models, children from low-income families demonstrated a uniform trend toward higher total (beta<inf>low-high</inf>=3.1; 95% confidence interval [95% CI], -0.08 to 6.2 [P=.06]), physical (beta=3.8; 95% CI, -0.4 to 8.0 [P=.09]), and psychological (beta=3.46; 95% CI, -1.91 to 8.84 [P=.21]) symptom distress compared with children from high-income families. Low income was associated with a uniform trend toward lower total (beta=-7.9; 95% CI, -14.8, to -1.1 [P=.03]), physical (beta=-11.2; 95% CI, -21.2 to -1.2 [P=.04]), emotional (beta=-5.8; 95% CI, -13.6 to 2.0 [P=.15]), social (beta=-2.52; 95% CI, -9.27 to 4.24 [P=.47]), and school (beta=-9.8; 95% CI, -17.8 to -1.8 [P=.03]) HRQOL. Conclusions: In this cohort of children with advanced cancer, children from low-income families were found to experience higher symptom burden and worse QOL. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/%2010.1002/cncr.31668" target="_blank" rel="noreferrer noopener">10.1002/cncr.31668</a> 2018 Advanced Cancer Al-Sayegh H Article Bona K Cancer Cancer Patient Child Cohort Analysis Distress Syndrome Dussel V Female Feudtner C highest income group household income Human Ilowite MF Kang TI lowest income group Ma C Major Clinical Study Male Oncology 2018 List outcome assessment Pain Palliative Therapy patient-reported outcome Poverty Prevalence Quality Of Life Rosenberg AR Secondary Analysis Wolfe J