Browse Items · Pediatric Palliative Care Library

Electronic Patient Reported Outcomes Measures (e-PROMs) in Pediatric Palliative Oncology Care: A Scoping Review

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…

What Are the Psychosocial Needs of Adolescents and Young Adults with Cancer? A Systematic Review of the Literature

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…

Tags: 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

Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carers

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…

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

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…

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

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…

Tags: 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

Parent-Reported Experience Measures of Care for Children with Serious Illnesses: A Scoping Review

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…

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

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.

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

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…

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