1. Connor, SR, Downing, J, Marston, J. Estimating the global need for palliative care for children: a cross-sectional analysis. J Pain Symptom Manag 2017; 53: 171–177.
Google Scholar | Crossref | Medline2. Fraser, LK, Gibson-Smith, D, Jarvis, S, et al. ‘Make Every Child Count’ estimating current and future prevalence of children and young people with life-limiting conditions in the United Kingdom. https://www.togetherforshortlives.org.uk/wp-content/uploads/2020/04/Prevalence-reportFinal_28_04_2020.pdf (2020, accessed December 19 2020).
Google Scholar3. National Guideline Alliance (UK) . End of life care for infants, children and young people with life-limiting conditions: planning and management. London: National Institute for Health and Care Excellence (UK, 2016.
Google Scholar4. Hain, R, Devins, M, Hastings, R, et al. Paediatric palliative care: development and pilot study of a ‘Directory’ of life-limiting conditions. BMC Palliat Care 2013; 12: 43.
Google Scholar | Crossref | Medline | ISI5. ACT/RCPCH . A guide to the development of children’s palliative care services. Bristol and London, 1997. ACT/RCPCH.
Google Scholar6. Radbruch, L, De Lima, L, Knaul, F, et al. Redefining palliative care—A new consensus-based definition. J Pain Symptom Manag 2020; 60: 754–764.
Google Scholar | Crossref | Medline7. Grégoire, MC, Frager, G. Ensuring pain relief for children at the end of life. Pain Res Manag 2006; 11: 163–171.
Google Scholar | Crossref | Medline8. Wolfe, J, Grier, HE, Klar, N, et al. Symptoms and suffering at the end of life in children with cancer. New Engl J Med 2000; 342: 326–333.
Google Scholar | Crossref | Medline | ISI9. Hongo, T, Watanabe, C, Okada, S, et al. Analysis of the circumstances at the end of life in children with cancer: symptoms, suffering and acceptance. Pediatr Int 2003; 45: 60–64.
Google Scholar | Crossref | Medline | ISI10. Jalmsell, L . Symptoms affecting children with malignancies during the last month of life: a nationwide follow-up. Pediatrics 2006; 117: 1314–1320.
Google Scholar | Crossref | Medline | ISI11. Goldman, A, Hewitt, M, Collins, GS, et al. 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.
Google Scholar | Crossref | Medline | ISI12. Oostendorp, LJ, Rajapakse, D, Kelly, P, et al. Documentation of breakthrough pain in narrative clinical records of children with life-limiting conditions: feasibility of a retrospective review. J Child Health Care 2019; 23: 564–578.
Google Scholar | SAGE Journals | ISI13. Mathews, L . Pain in children: neglected, unaddressed and mismanaged. Indian J Palliat Care 2011; 17: 70–73.
Google Scholar | Crossref | Medline14. Galloway, KS, Yaster, M. Pain and symptom control in terminally ill children. Pediatr Clin North Am 2000; 47: 711–746.
Google Scholar | Crossref | Medline | ISI15. Liben, S . Pediatric palliative medicine: obstacles to overcome. J Palliat Care 1996; 12: 24–28.
Google Scholar | SAGE Journals | ISI16. Liossi, C, Howard, RF. Pediatric chronic pain: biopsychosocial assessment and formulation. Pediatrics 2016; 138: e20160331.
Google Scholar | Crossref | Medline17. Ong, CK, Forbes, D. Embracing Cicely Saunders’s concept of total pain. BMJ 2005; 331: 576.5–57577.
Google Scholar | Crossref | Medline18. Howard, RF, Liossi, C. Pain assessment in children. Arch Dis Child 2014; 99: 1123–1124.
Google Scholar | Crossref | Medline19. National Institute for Health and Care Excellence . End of life care for infants, children and young people with life-limiting conditions: planning and management. London, 2016. National Guideline Alliance (UK).
Google Scholar20. McGrath, PJ, Walco, GA, Turk, DC, et al. Core outcome domains and measures for pediatric acute and chronic/recurrent pain clinical trials: PedIMMPACT recommendations. J Pain 2008; 9: 771–783.
Google Scholar | Crossref | Medline | ISI21. Quinn, BL, Seibold, E, Hayman, L. Pain assessment in children with special needs: a review of the literature. Except Child 2015; 82: 44–57.
Google Scholar | SAGE Journals | ISI22. Lee, RR, Rashid, A, Ghio, D, et al. Chronic pain assessments in children and adolescents: a systematic literature review of the selection, administration, interpretation, and reporting of unidimensional pain intensity scales. Pain Res Manag 2017; 2017: 1–17.
Google Scholar | Crossref23. Stinson, JN, Kavanagh, T, Yamada, J, et al. Systematic review of the psychometric properties, interpretability and feasibility of self-report pain intensity measures for use in clinical trials in children and adolescents. Pain 2006; 125: 143–157.
Google Scholar | Crossref | Medline | ISI24. von Baeyer, CL, Spagrud, LJ. Systematic review of observational (behavioral) measures of pain for children and adolescents aged 3 to 18 years. Pain 2007; 127: 140–150.
Google Scholar | Crossref | Medline | ISI25. Andersen, RD, Langius-Eklöf, A, Nakstad, B, et al. The measurement properties of pediatric observational pain scales: a systematic review of reviews. Int J Nurs Stud 2017; 73: 93–101.
Google Scholar | Crossref | Medline26. Birnie, KA, Hundert, AS, Lalloo, C, et al. Recommendations for selection of self-report pain intensity measures in children and adolescents: a systematic review and quality assessment of measurement properties. Pain 2019; 160: 5–18.
Google Scholar | Crossref | Medline27. Muckaden, M, Balaji, P, Tilve, P, et al. Paediatric palliative care: theory to practice. Indian J Palliat Care 2011; 17: 52–60.
Google Scholar | Crossref | Medline28. Batalha, L, Fernandes, A, Campos, C, et al. Pain assessment in children with cancer: a systematic review. Revista de Enfermagem Referência 2015; Nº5: 119–127.
Google Scholar | Crossref29. Moher, D, Liberati, A, Tetzlaff, J, et al. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. BMJ 2009; 339: b2535–b2535.
Google Scholar | Crossref | Medline30. Prinsen, CAC, Mokkink, LB, Bouter, LM, et al. COSMIN guideline for systematic reviews of patient-reported outcome measures. Qual Life Res 2018; 27: 1147–1157.
Google Scholar | Crossref | Medline31. Terwee, CB, Jansma, EP, Riphagen, II, et al. Development of a methodological PubMed search filter for finding studies on measurement properties of measurement instruments. Qual Life Res 2009; 18: 1115–1123.
Google Scholar | Crossref | Medline | ISI32. COnsensus-based standards for the selection of health measurement INstruments (COSMIN) website .
Google Scholar33. Aidoo, E, Rajapakse, D. End of life care for infants, children and young people with life-limiting conditions: planning and management: the NICE guideline 2016. Arch Dis Child 2018; 103: 296–299.
Google Scholar | Medline34. Sladek, R, Tieman, J, Fazekas, BS, et al. Development of a subject search filter to find information relevant to palliative care in the general medical literature. J Med Libr Assoc 2006; 94: 394–401.
Google Scholar | Medline | ISI35. Beecham, E, Candy, B, Howard, R, et al. Pharmacological interventions for pain in children and adolescents with life-limiting conditions. Cochrane Database Syst Rev 2015. Issue 3. Art. No.: CD010750. DOI: 10.1002/14651858.CD010750.pub2
Google Scholar | Crossref | Medline36. Mokkink, LB, Terwee, CB, Patrick, DL, et al. The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. J Clin Epidemiol 2010; 63: 737–745.
Google Scholar | Crossref | Medline | ISI37. Mokkink, LB, Terwee, CB, Patrick, DL, et al. The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study. Qual Life Res 2010; 19: 539–549.
Google Scholar | Crossref | Medline | ISI38. Mokkink, LB, de Vet, HCW, Prinsen, CAC, et al. COSMIN risk of bias checklist for systematic reviews of patient-reported outcome measures. Qual Life Res 2018; 27: 1171–1179.
Google Scholar | Crossref | Medline39. Schünemann, HJ, Mustafa, R, Brozek, J, et al. GRADE guidelines: 16. GRADE evidence to decision frameworks for tests in clinical practice and public health. J Clin Epidemiol 2016; 76: 89–98.
Google Scholar | Crossref | Medline40. Manji, A, Tomlinson, D, Ethier, MC, et al. Psychometric properties of the oral mucositis daily questionnaire for child self-report and importance of mucositis in children treated with chemotherapy. Support Care Cancer 2012; 20: 1251–1258.
Google Scholar | Crossref | Medline41. Savedra, MC, Holzemer, WL, Tesler, MD, et al. Assessment of postoperation pain in children and adolescents using the adolescent pediatric pain tool. Nurs Res 1993; 42: 5???9–9.
Google Scholar | Crossref42. Fernandes, A, Batalha, L, Perdigão, A, et al. Cultural validation of the adolescent pediatric pain tool (APPT) in portuguese children with cancer. Revista de Enfermagem Referência 2015; i série: 99–105.
Google Scholar | Crossref43. Özalp Gerçeker, G, Bilsin, E, Binay, Ş, et al. Cultural adaptation of the adolescent pediatric pain tool in Turkish children with cancer. Eur J Oncol Nurs 2018; 34: 28–34.
Google Scholar | Crossref | Medline44. Madi, D, Badr, LK. Translation, cross-cultural adaptation, and validation of the adolescent pediatric pain tool (APPT) for multidimensional measurement of pain in children and adolescents. Pain Manag Nurs 2019; 20: 549–555.
Google Scholar | Crossref | Medline45. Pfefferbaum, B, Adams, J, Aceves, J. The influence of culture on pain in Anglo and Hispanic children with cancer. J Am Acad Child Adolesc Psychiatry 1990; 29: 642–647.
Google Scholar | Crossref | Medline46. Zahr, LKB, Puzantian, H, Abboud, M, et al. Assessing procedural pain in children with cancer in Beirut, Lebanon. J Pediatr Oncol Nurs 2006; 23: 311–320.
Google Scholar | SAGE Journals47. LeBaron, S, Zeltzer, L. Assessment of acute pain and anxiety in children and adolescents by self-reports, observer reports, and a behavior checklist. J Consult Clin Psychol 1984; 52: 729–738.
Google Scholar | Crossref | Medline | ISI48. Hicks, CL, von Baeyer, CL, Spafford, PA, et al. The faces pain scale – revised: toward a common metric in pediatric pain measurement. Pain 2001; 93: 173–183.
Google Scholar | Crossref | Medline | ISI49. Bieri, D, Reeve, RA, Champion, DG, et al. The faces pain scale for the self-assessment of the severity of pain experienced by children: development, initial validation, and preliminary investigation for ratio scale properties. Pain 1990; 41: 139–150.
Google Scholar | Crossref | Medline | ISI50. Miró, J, Huguet, A. Evaluation of reliability, validity, and preference for a pediatric pain intensity scale: the Catalan version of the faces pain scale – revised. Pain 2004; 111: 59–64.
Google Scholar |