Assessment tools in pediatric palliative care in the hospital setting: an integrative literature review

Authors

DOI:

https://doi.org/10.11606/issn.2238-6149.v35i1-3e232496

Keywords:

Palliative Care, Occupational Therapy, Assessment Tools, Pediatrics

Abstract

INTRODUCTION: Pediatric Palliative Care (PPC) refers to the care provided by a multidisciplinary team, aimed at improving the quality of life of children and adolescents, as well as their families, in the face of life-threatening illnesses. In this context, the Occupational Therapist plays a fundamental role, promoting independence and autonomy in daily activities that are affected by the illness and/or treatment. The growing recognition of the importance of palliative care in pediatrics highlights the need for effective tools to assess and guide Occupational Therapy interventions. OBJECTIVE: To map the standardized assessment tools used in the context of hospital PPC. METHODOLOGICAL PROCEDURES: Integrative literature review in the Virtual Health Library (VHL) and PubMed databases, in English and Portuguese, from 2012 to 2024. RESULTS: Fifteen studies were identified, indicating 23 standardized assessment tools. These tools were analyzed according to two thematic units: (1) domains of the tools and (2) who answers the tool. CONCLUSION: This review contributed to expanding knowledge about the standardized assessment tools used in PPC, discussing how the domains covered by the tools support occupational therapeutic reasoning.

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Author Biographies

  • Brunna Mainar de Lima, Universidade Federal do Rio de Janeiro -UFRJ

     Universidade Federal do Rio de Janeiro -UFRJ

  • Maria Clara Salgado Ramos, Universidade Federal do Rio de Janeiro-UFRJ

     Universidade Federal do Rio de Janeiro-UFRJ

  • Carolina Becker Bueno Lopes, Universidade Federal do Rio de Janeiro -UFRJ

     Universidade Federal do Rio de Janeiro -UFRJ

References

Sepúlveda C, Marlin A, Yoshida T, Ullrich A. Palliative Care: the World Health Organization's global perspective. J Pain Symptom Manag. 2002;24(2):91-6. doi: https://doi.org/10.1016/s0885-3924(02)00440-2.

World Health Organization. Global atlas of palliative care. 2nd ed. Geneva: World Health Organization; 2020. Available from: https://thewhpca.org/resources/global-atlas-of-palliative-care-2nd-ed-2020/

Orellana LA, Ullrich C, Cook EF, Kang T, Geyer R, Feudtner C, Dussel V. Symptoms and distress in children with advanced cancer: prospective patient-reported outcomes from the PediQUEST study. J Clin Oncol. 2015;33(17):1928-35. https://doi.org/10.1200/JCO.2014.59.1222.

Paediatric Palliative Care Australia and New Zealand. A practical guide to palliative care in paediatrics. 4th ed. 2023. Available from: https://paediatricpalliativecare.org.au/wp-content/uploads/dlm_uploads/2023/11/A-Practical-Guide-to-Palliative-Care-in-Paediatrics-4th-Edition-16112023.pdf

American Occupational Therapy Association. Occupational Therapy Practice Framework: Domain and Process. 4th ed. AOTA Press. 2020; 74(Suppl 2). https://doi.org/10.5014/ajot.2020.74S2001

Darcy, L., Hancock, K., & Stenmarker, M. (2019). The influence of parental attitudes and caregiver behavior on children’s engagement in activities during hospitalization. Journal of Pediatric Nursing, 44, 78-85. https://doi.org/10.1016/j.pedn.2018.10.008

Law M, Baum C, Dunn W. Measuring occupational performance: supporting best practice in occupational therapy. Slack Incorporated; 2005. https://doi.org/10.1111/j.1440-1630.2006.00589.x

Asher AJ, Punwar M. Occupational therapy assessment tools: an annotated index. 4th ed. Bethesda (MD): AOTA Press; 2014.

Hinojosa J, Kramer P. Evaluation in occupational therapy: obtaining and interpreting data. 4th ed. AOTA Press; 2014. doi: 10.7139/2017.978-1-56900-431-9.

Kramer P, Hinojosa J. Frames of reference for pediatric occupational therapy. 2nd ed. Philadelphia: Lippincott Williams & Wilkins; 1999.

Kudo AM, Parreira FV, Barros PBM, Zamperd SSS. Construção do instrumento de avaliação de terapia ocupacional em contexto hospitalar pediátrico: sistematizando informações. Cad Bras Ter Terap Ocup. 2012;20(2):173-81. http://dx.doi.org/10.4322/cto.2012.018

Downing J, Namisango E, Harding R. Outcome measurement in paediatric palliative care: lessons from the past and future developments. Ann Palliat Med. 2018;7(Suppl 3). http://dx.doi.org/10.21037/apm.20

Cadamuro SA, Franco JO, Paiva CE, Oliveira CZ, Paiva BSR. Symptom screening in paediatrics tool for screening multiple symptoms in Brazilian patients with cancer: a cross-sectional validation study. http://dx.doi. org/10.1136/bmjopen-2018- 028149

Widger K, Bansback N, Forero R, et al. Factor structure of the Quality of Children’s Palliative Care Instrument (QCPCI) when completed by parents of children with cancer. BMC Palliat Care. 2019; 18(1):23. https://doi.org/10.1186/s12904-019-0406-9.

Aoun SM, O'Connor M, Moss A, et al. The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups. Palliat Care Soc Pract. 2020;14:1-14. https://doi.org/10.1177/2632352420958000

Cook S, Vickers K, Fennell A, et al. Feasibility of a randomized controlled trial of symptom screening and feedback to healthcare providers compared with standard of care using the SPARK platform. Support Care Cancer. 2020 Jun;28(6):2729-34. https://doi.org/10.1007/s00520-019-05115-2

Pelke S, Dusseldorp E, Gervais P, et al. Development and psychometric validation of the family-centered multidimensional outcome measure for pediatric palliative care targeted to children with severe neurological impairment: a multicenter prospective study. Palliat Med. 2021;35(3):611-20. https://doi.org/10.1177/0269216320975626

Song IG, Kim H, Kim J, et al. Paediatric palliative screening scale as a useful tool for clinicians’ assessment of palliative care needs of pediatric patients: a retrospective cohort study. BMC Palliat Care. 2021;20(73). https://doi.org/10.1186/s12904-021-00765-8

Avoine-Blondin J, Degrâce M, Lépine J, et al. Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool. BMC Palliat Care. 2022;21(138). https://doi.org/10.1186/s12904-022-01025-z

Chan AY, Lee J, Cheung K, et al. Pain assessment tools in paediatric palliative care: A systematic review of psychometric properties and recommendations for clinical practice. Palliat Med. 2022;36(1):30-43. https://doi.org/10.1177/02692163211049309

Kisch AM, Schmid T, Gellert P, et al. A person-centred intervention remotely targeting family caregivers’ support needs in the context of allogeneic hematopoietic stem cell transplantation—a feasibility study. Support Care Cancer. 2022;30:9039-47. https://doi.org/10.1007/s00520-022-07306-w.

Palaré MJ, Tavares F, Machado MC. Validação da versão portuguesa de um instrumento de avaliação de necessidades paliativas pediátricas: a Pediatric Palliative Screening Scale. Acta Méd Port. 2023;36(5):326-35. https://doi.org/10.20344/amp.18071

Fisher V, Atkin K, Ewing G, Grande G, Fraser LK. Assessing the suitability of the Carer Support Needs Assessment Tool (CSNAT-Paediatric) for use with parents of children with a life-limiting condition: A qualitative secondary analysis. Palliat Med. 2023; 38(1):100-109. https://doi.org/10.1177/02692163231214471

Robichaud LA, Felipe J, Duval M, Michon B, Olivier-D'Avignon M, Perreault S, et al. Quality-of-life assessment in pediatric advanced cancer: development of the patient-reported outcome measure Advance QoL. Curr Oncol. 2024;31(4):2289-2304. https://doi.org/10.3390/curroncol31040170

Lima KYN, Santos VEP. Play as a care strategy for children with cancer. Rev Gaúcha Enferm. 2015;36(2). https://doi.org/10.1590/1983-1447.2015.02.51514

Sousa CS, Barreto BC, Santana GAS, Miguel JVF, Braz LS, Lima LN, et al. O brinquedo terapêutico e o impacto na hospitalização da criança: revisão de escopo. Rev Soc Bras Enferm Ped. 2021;21(2):173-80. http://dx.doi.org/10.31508/1676-379320210024

Best M, Butow P, Olver I. Do patients want doctors to talk about spirituality? A systematic literature review. Patient Educ Couns. 2015 Nov;98(11):1320-8. https://doi.org/10.1016/j.pec.2015.04.017

Ewing G, Brundle C, Payne S, Grande G; National Association for Hospice at Home. The Carer Support Needs Assessment Tool (CSNAT) for use in palliative and end-of-life care at home: a validation study. J Pain Symptom Manage. 2013 Sep;46(3):395-405. http://dx.doi.org/10.1016/j.jpainsymman.2012.09.008

Wang H, Qi L, Cui L, Ji X, Tian F. Randomized controlled trial of cognitive-behavioral therapy for anxiety and depression in children with chronic illness: effects on emotional well-being and daily functioning. J Pediatr Psychol. 2021;46(6):642-654. https://doi.org/10.3390/psychiatryint2020016

Boettger Giardineto ARS, Martini EC, Cruz JA, Moni LO, Ruiz LM, Rodrigues P, Pereira T. A importância da atuação da terapia ocupacional com a população infantil hospitalizada: a visão de profissionais da área da saúde. Cad Ter Ocup UFSCar. 2009 Jan-Jun;17(1):63-9. Available from: https://www.cadernosdeterapiaocupacional.ufscar.br/index.php/cadernos/article/view/119

Souza MA, Maia EBS, Ribeiro CA, Melo LL. Vivências de irmãos de crianças com doenças crônicas reveladas pelo brinquedo terapêutico dramático. Rev Gaúcha Enferm. 2023;44. https://doi.org/10.1590/1983-1447.2023.20220109.pt

Gaab EM, Owens G, MacLeod R. Siblings caring for and about pediatric palliative care patients. J Palliat Med. 2013 Dec;17(1):50-6. https://doi.org/10.1089/jpm.2013.0117

Fontes R de S. A escuta pedagógica à criança hospitalizada: discutindo o papel da educação no hospital. Rev Bras Educ. 2005 May;(29):119–38. https://doi.org/10.1590/S1413-24782005000200010

Pelentsov LJ, Laws TA, Esterman AJ. The supportive care needs of parents caring for a child with a rare disease: A scoping review. Disabil Health J. 2015 Oct;8(4):475-91. https://doi.org/10.1016/j.dhjo.2015.03.009

Blais S, Cohen-Gogo S, Gouache E, Guerrini-Rousseau L, Brethon B, Rahal I, et al. End-of-life care in children and adolescents with cancer: perspectives from a French pediatric oncology care network. Tumori. 2022 Jun;108(3):223-229. https://doi.org/10.1177/03008916211013384.

Hinds PS. Quality of life in children and adolescents with cancer. Semin Oncol Nurs. 1990 Nov;6(4):285-91. https://doi.org/10.1016/0749-2081(90)90031-Y

Espíndola AV, Quintana AM, Farias CP, München MAB. Relações familiares no contexto dos cuidados paliativos. Rev Bioét. 2018 Oct;26(3):371–7. https://doi.org/10.1590/1983-80422018263256

Tomlinson D, von Baeyer CL, Stinson JN, Sung L. A systematic review of faces scales for the self-report of pain intensity in children. Pediatrics. 2010 Nov;126(5). https://doi.org/10.1542/peds.2010-1609

Initial development of Supportive care Assessment, Prioritization and Recommendations for Kids (SPARK), a symptom screening and management application. BMC Med Inform Decis Mak. 2019;19(9). https://doi.org/10.1186/s12911-018-0715-6

King's College London. Cicely Saunders Institute - C-POS Research. Impact. Available from:https://www.kcl.ac.uk/research/c-pos#:~:text=Impact,video%20for%20family%20members%20here

Avagyan A, Mkrtchyan H, Shafa FA, Mathew JA, Petrosyan T. Effectiveness and Determinant Variables of Augmentative and Alternative Communication Interventions in Cerebral Palsy Patients with Communication Deficit: a Systematic Review. CoDAS. 2021;33(5). https://doi.org/10.1590/2317-1782/20202020244

Brasil. Ministério do Trabalho e Emprego. Classificação Brasileira de Ocupações: CBO 2002. 3. ed. Brasília: MTE; 2002. Disponível em: http://www.mtecbo.gov.br. Acesso em: 10 nov. 2024.

Published

2025-12-11

Issue

Section

Article Reviews

How to Cite

Lima, . B. M. de, Ramos, M. C. S., & Lopes, C. B. B. (2025). Assessment tools in pediatric palliative care in the hospital setting: an integrative literature review. Revista De Terapia Ocupacional Da Universidade De São Paulo, 35(1-3), e232496. https://doi.org/10.11606/issn.2238-6149.v35i1-3e232496