ABSTRACT
Context
Objectives
Methods
Results
Conclusion
Keywords
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Subscribe to Journal of Pain and Symptom ManagementREFERENCES
- Polysymptomatology in Pediatric Patients Receiving Palliative Care Based on Parent-Reported Data.JAMA Netw Open. 2021; 4e2119730
- Achieving child-centred care for children and young people with life-limiting and life-threatening conditions—a qualitative interview study.Eur J Pediatr. 2022; 181: 3739-3752
- Palliative care for adolescents and young adults with advanced illness: A scoping review.Palliat Med. 2022; 026921632211361
- Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes.Patient. 2019; 12: 15-55
- International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS.J Pain Symptom Manage. 2022; 63: e529-e543
- Paediatric palliative care: challenges and emerging ideas.Lancet. 2008; 371: 852-864
- Estimating the Global Need for Palliative Care for Children: A Cross-sectional Analysis.J Pain Symptom Manage. 2017; 53: 171-177
- Parent and clinician preferences for location of end-of-life care: home, hospital or freestanding hospice?.Pediatr Blood Cancer. 2014; 61: 859-864
- Impact of a pediatric palliative care program.Pediatr Blood Cancer. 2010; 54: 279-283
- Choices and control: parental experiences in pediatric terminal home care.J Pediatr Oncol Nurs. 2000; 17: 12-21
- The supportive and palliative care needs of Australian families of children who die from cancer.Palliat Med. 2009; 23: 526-536
- Elements of optimal paediatric palliative care for children and young people: An integrative review using a systematic approach.Collegian. 2015; 22: 421-431
- Adolescent end of life preferences and congruence with their parents’ preferences: results of a survey of adolescents with cancer.Pediatr Blood Cancer. 2015; 62: 710-714
- Parents’ perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer.Klin Padiatr. 2008; 220: 166-174
- A Guide to Children's Palliative Care.England: Together for Short Lives. 4th ed. 2018
- Integrating palliative care and symptom relief into paediatrics: a WHO guide for health-care planners, implementers and managers.World Health Organization, Geneva2018 (Available from:) (Accessed October 26, 2022)
- Hospital-based home care for children with cancer: a qualitative exploration of family members’ experiences in Denmark.Eur J Cancer Care (Engl). 2012; 21: 59-66
- Kristensson Hallström I. A possibility for strengthening family life and health: Family members’ lived experience when a sick child receives home care in Sweden.Health Soc Care Community. 2018; 26: 224-231
- Advanced cancer in children: how parents decide on final place of care for their dying child.Int J Palliat Nurs. 2005; 11: 284-291
- Place of care.in: Goldman A Hain R Liben S Oxford textbook of palliative care for children. 2nd ed. Oxford University Press, Oxford, New York2012
- Specialist paediatric palliative care services: what are the benefits?.Arch Dis Child. 2017; 102: 923-929
- Impact of Specialized Pediatric Palliative Care: A Systematic Review.J Pain Symptom Manage. 2020; 59 (339-364.e10)
- Palliative care of children with brain tumors: a parental perspective.Arch Pediatr Adolesc Med. 2010; 164: 225-230
- Agrawal N. Parents’ acceptance and regret about end of life care for children who died due to malignancy.Support Care Cancer. 2020; 28: 303-308
- Family experiences with palliative care for children at home: a systematic literature review.BMC Palliat Care. 2020; 19: 165
- Home-based end of life care for children and their families - a systematic scoping review and narrative synthesis.J Pediatr Nurs. 2020; 55: 126-133
- The PRISMA 2020 statement: an updated guideline for reporting systematic reviews.BMJ. 2021; 372: n71
Centre for Reviews and Dissemination, University of York. PROSPERO. International prospective register of systematic reviews. Available from: https://www.crd.york.ac.uk/PROSPERO/. Accessed March 25, 2020.
Covidence systematic review software, Veritas Health Innovation, Melbourne, Australia. Available from: www.covidence.org. Accessed October 26, 2022.
The Cochrane Collaboration. Data collection form. Intervention review – RCTs and non-RCTs. Available from: https://training.cochrane.org/sites/training.cochrane.org/files/public/uploads/resources/downloadable_resources/English/Collecting%20data%20-%20form%20for%20RCTs%20and%20non-RCTs.doc. Accessed August 6, 2019.
Wells G, Shea B, O'Connell D, et al. The Newcastle-Ottawa Scale (NOS) for assessing the quality of nonrandomised studies in meta-analyses. Available from: http://www.ohri.ca/programs/clinical_epidemiology/oxford.asp. Accessed August 6, 2019.
- Guidance on the conduct of narrative synthesis in systematic reviews: A product from the ESRC Methods Programme.Lancaster University, 2006 (Available from:) (Accessed August 2, 2019)
The Cochrane Collaboration. Review Manager (RevMan) [Computer program]. Version 5.4. 2020.
- Specialized pediatric palliative home care: a prospective evaluation.J Palliat Med. 2013; 16: 1588-1594
- Specialized pediatric palliative care services for children dying from cancer: A repeated cohort study on the developments of symptom management and quality of care over a 10-year period.Palliat Med. 2019; 33: 381-391
- Improved quality of life at end of life related to home-based palliative care in children with cancer.J Palliat Med. 2015; 18: 143-150
- Paediatric palliative care improves patient outcomes and reduces healthcare costs: evaluation of a home-based program.BMC Palliat Care. 2018; 17: 11
- Impact of a multi-professional expert team on EOL care of children with cancer.Pediatr Int. 2021; 63: 1451-1457
World Health Organization. WHO Definition of Palliative Care. [cited 2019 Aug 8]. Available from: https://www.who.int/cancer/palliative/definition/en/. Accessed August 8, 2019.
- Looking beyond where children die: determinants and effects of planning a child's location of death.J Pain Symptom Manage. 2009; 37: 33-43
- A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life.Palliat Med. 2020; 34: 689-707
- Comparison of child self-report and parent proxy-report of symptoms: Results from a longitudinal symptom assessment study of children with advanced cancer.J Spec Pediatr Nurs. 2021; 26: e12316
- Agreement Between Child Self-report and Caregiver-Proxy Report for Symptoms and Functioning of Children Undergoing Cancer Treatment.JAMA Pediatr. 2020; 174e202861
- Are We Agreed? Self- Versus Proxy-Reporting of Paediatric Health-Related Quality of Life (HRQoL) Using Generic Preference-Based Measures: A Systematic Review and Meta-Analysis.Pharmacoeconomics. 2022; 40: 1043-1067
- Assessment of health-related quality of life in children with cancer: Consistency and agreement between parent and child reports.Cancer. 2006; 15 (106): 2267-2274
- Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality.Qual Life Res. 2021; 30: 1803-1832
- Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use.Palliat Med. 2016; 30: 935-949
- Ethical Challenges in Pediatric Oncology Care and Clinical Trials.in: Bauer AW Hofheinz RD Utikal J Ethical Challenges in Cancer Diagnosis and Therapy. Springer, Cham2021
- The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review.J Palliat Med. 2019; 22: 915-926
- Evaluating complex interventions in end of life care: the MORECare statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews.BMC Med. 2013; 11: 111
- Challenges and Priorities for Pediatric Palliative Care Research in the U.S. and Similar Practice Settings: Report From a Pediatric Palliative Care Research Network Workshop.J Pain Symptom Manage. 2019; 58 (909-917.e3)
- Predictors for place of death among children:A systematic review and meta-analyses of recent literature.Eur J Pediatr. 2020; 179: 1227-1238
- Inequality in place-of-death among children: a Danish nationwide study.Eur J Pediatr. 2022; 181: 609-617
- United Kingdom Children's Cancer Study Group/Paediatric Oncology Nurses’ Forum Palliative Care Working Group. Symptoms in children/young people with progressive malignant disease: United Kingdom Children's Cancer Study Group/Paediatric Oncology Nurses Forum survey.Pediatrics. 2006; 117: e1179-e1186