SynthesisPediatrics2019
Instruments to Measure Outcomes in Pediatric Palliative Care: A Systematic Review.
Synthesis in Pediatrics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
35 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Impact of Specialized Pediatric Palliative Care: A Systematic Review.Journal of pain and symptom management · 2020Pooled it
- An Art Therapy Workbook for Pediatric Patients with Cancer Receiving Palliative Care: Program Design and Effects.Journal of hospice and palliative care · 2026Article
- Outcome measurement tools in pediatric oncology palliative care: a scoping review of domains, validation and contextual relevance.BJC reports · 2026Review
- Measuring the psychological symptoms of pediatric palliative care patients and their caregivers: a scoping review of available instruments.BMC psychology · 2026Article
- Developing and Testing Electronic Versions of the Advance QoL Tools for Collecting Self-Reports of Quality of Life in Children and Adolescents With Advanced Cancer.Scandinavian journal of caring sciences · 2026Article
- A novel child-centred core palliative care outcome measure for use in clinical practice and research: findings from a multinational validation study.Health and quality of life outcomes · 2025Article
- Quality-of-Life Assessment in Pediatric Advanced Cancer: Development of the Patient-Reported Outcome MeasureCurrent oncology (Toronto, Ont.) · 2024Article
- Article
- Development of a child and family centred outcome measure for children and young people with life-limiting and life-threatening conditions: progress to date on the Children's Palliative Care Outcome Scale (C-POS:UK).Palliative care and social practice · 2024Article
- Focusing on life rather than illness: the lived experience of children with life-threatening and life-limiting conditions-a qualitative study.Palliative care and social practice · 2024Article
- Quality of Life in Palliative Care: A Systematic Meta-Review of Reviews and Meta-Analyses.Clinical practice and epidemiology in mental health : CP & EMH · 2024Article
- Achieving consensus on priority items for paediatric palliative care outcome measurement: Results from a modified Delphi survey, engagement with a children's research involvement group and expert item generation.Palliative medicine · 2023Article
- Patient-reported outcome measures in children, adolescents, and young adults with palliative care needs-a scoping review.BMC palliative care · 2023Article
- Pediatric Palliative Care: Insights into Assessment Tools andReview Instruments.Children (Basel, Switzerland) · 2023Review
- The Quality of Life of Children Facing Life-Limiting Conditions and That of Their Parents in Belgium: A Cross-Sectional Study.Children (Basel, Switzerland) · 2023Article
- Measuring Pediatric Palliative Care Quality: Challenges and Opportunities.Journal of pain and symptom management · 2023Article
- Sleep Problems in Patients With Psoriatic Arthritis: A Systematic Literature Review and Metaanalysis.The Journal of rheumatology · 2023Article
- Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview study.European journal of pediatrics · 2022Article
- Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool.BMC palliative care · 2022Article
- The Design of a Data Management System for a Multicenter Palliative Care Cohort Study.Journal of pain and symptom management · 2022Review
Corrections and comments
- Commented on by
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
contextPediatric palliative care (PPC) is intended to promote children's quality of life by using a family-centered approach. However, the measurement of this multidimensional outcome remains challenging.
objectiveTo review the instruments used to assess the impact of PPC interventions. DATA SOURCES: Five databases (Embase, Scopus, The Cochrane Library, PsychInfo, Medline) were searched. STUDY SELECTION: Inclusion criteria were as follows: definition of PPC used; patients aged 0 to 18 years; diseases listed in the directory of life-limiting diseases; results based on empirical data; and combined descriptions of a PPC intervention, its outcomes, and a measurement instrument. DATA EXTRACTION: Full-text articles were assessed and data were extracted by 2 independent researchers, and each discrepancy was resolved through consensus. The quality of the studies was assessed by using the
resultsNineteen of 2150 articles met the eligibility criteria. Researchers in 15 used quantitative methods, and 9 were of moderate quality. Multidimensional outcomes included health-related quality of life, spiritual well-being, satisfaction with care and/or communication, perceived social support, and family involvement in treatment or place-of-care preferences. PPC interventions ranged from home-based to hospital and respite care. Only 15 instruments (of 23 reported) revealed some psychometric properties, and only 5 included patient-reported (child) outcome measures. LIMITATIONS: We had no access to the developmental process of the instruments used to present the underlying concepts that were underpinning the constructs.
conclusionsData on the psychometric properties of instruments used to assess the impact of PPC interventions were scarce. Children are not systematically involved in reporting outcomes.
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Identifiers
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.