Validation of the European Portuguese Version of a Pediatric Palliative Needs Assessment Tool: The Pediatric Palliative Screening Scale

Authors

  • Maria João Palaré Simões Equipa Intra-hospitalar de Suporte em Cuidados Paliativos Pediátricos. Hospital de Santa Maria. Centro Hospitalar Universitário Lisboa Norte. Lisboa. https://orcid.org/0000-0001-7466-8052
  • Filipa Tavares Equipa Intra-hospitalar de Suporte em Cuidados Paliativos. Hospital Santa Maria. Centro Hospitalar Universitário LIsboa Norte. Lisboa.
  • Maria do Céu Machado Faculdade de Medicina. Universidade de Lisboa. Lisboa.

DOI:

https://doi.org/10.20344/amp.18071

Keywords:

Child, Chronic Disease, Needs Assessment, Palliative Care, Pediatrics, Portugal

Abstract

Introduction: The Pediatric Palliative Screening Scale (PaPaS Scale) was designed to help professionals to identify life-limiting or life-threatening children/young people with complex chronic conditions who would benefit from pediatric palliative care and facilitate their timely and appropriate referral. The aim of this study was to translate, culturally adapt and validate the PaPaS Scale for the Portuguese pediatric population.
Material and Methods: A quantitative methodological study involving translation, cultural adaptation and validation of a scale was performed. In the first phase, the translation and cultural adaptation of the original version of the PaPaS Scale from English to European Portuguese was undertaken. The second phase consisted of evaluating the psychometric properties of the Portuguese version of the PaPaS Scale.
Results: Fifty-one enquires pertaining to children/young adults with complex chronic conditions were completed and returned, the sum of the responses to the items on the scale revealed that 84.4% of the patients had an indication for referral to pediatric palliative care. The internal consistency analysis obtained a value of Cronbach’s alpha above 0.80, so the scale was considered adequate for the analyzed data. In our sample, the item-total correlation values indicated that the 11 variables measured the PaPaS Scale with good reliability and unidimensionally. The confirmatory factor analysis suggested that the items were significant, consistent, and presented convergent validity globally. Only item “2.2. Treatment side effects” obtained a value below the defined threshold.
Conclusion: The PaPaS Scale was translated and adapted to the European Portuguese version, allowing its immediate use in the Portuguese population. It will be essential to design multicentric studies to expand the knowledge about the psychometric characteristics of this scale.

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References

International Children’s Palliative Care Network. The ICPCN Declaration of Cape Town. 2009. [consultado 2019 out 2]. Disponível em: http://www.icpcn.org/the-icpcn-declaration-of-cape-town/.

World Health Organization. Health topics: palliative care. [consultado 2019 nov 02]. Disponível em: http://www.who.int/cancer/palliative/definition/en/.

Forjaz de Lacerda A. Cuidados paliativos pediátricos. In: Barbosa A, Pina PR, Tavares F, Neto IG, editores. Manual de cuidados paliativos. 3a edição. Lisboa: Associação para a Investigação e Desenvolvimento da FMUL; 2016. p. 503-25.

Lacerda AF, Pinto C, Calado E, Ferreira F, Luz F, Oliveira G, et al. Reunião “Cuidados paliativos pediátricos: uma reflexão. Que futuro em Portugal?”. Lisboa: Fundação Calouste Gulbenkian; 2013.

Portugal. Decreto-Lei nº 46/2018. Diário da República, I Série, nº 46 (2018/03/06). p 1177-81.

International Children’s Palliative Care Network. ICPCN estimated levels of children’s palliative care provision worldwide. [consultado 2019 nov 2]. Disponível em: http://www.icpcn.org/1949-2/.

Capelas ML, Coelho P, Batista S, Sapeta AP. Observatório Português dos Cuidados Paliativos: relatório outono 2019. Lisboa: Universidade Católica Editora; 2020.

Forjaz de Lacerda A, Gomes B. Trends in cause and place of death for children in Portugal (a European country with no Paediatric palliative care) during 1987-2011: a population-based study. BMC Pediatr. 2017;17:215-11. DOI: https://doi.org/10.1186/s12887-017-0970-1

Bergstraesser E, Hain RD, Pereira JL. The development of an instrument that can identify children with palliative care needs: the Paediatric Palliative Screening Scale (PaPaS Scale): a qualitative study approach. BMC Palliat Care. 2013;12:20. DOI: https://doi.org/10.1186/1472-684X-12-20

Bergstraesser E, Paul M, Rufibach K, Hain RD, Held L. The Paediatric Palliative Screening Scale: further validity testing. Palliat Med. 2014;28:530-3. DOI: https://doi.org/10.1177/0269216313512886

Feudtner C, Hexem KR, Shabbout M, Feinstein JA, Sochalski J, Silber JH. Prediction of pediatric death in the year after hospitalization: a population-level retrospective cohort study. J Palliat Med. 2009;12:160-9. DOI: https://doi.org/10.1089/jpm.2008.0206

De Lisle-Porter M, Podruchny AM. The dying neonate: family-centered end-of-life care. Neonatal Netw. 2009;28:75-83. DOI: https://doi.org/10.1891/0730-0832.28.2.75

Together for Short Lives. A guide to children’s palliative care. 2018. [consultado 2019 nov 02]. Disponível em: https://www.togetherforshortlives.org.uk/resource/a-guide-to-childrens-palliative-care/.

Chong PH, Soo J, Yeo ZZ, Ang RQ, Ting C. Who needs and continues to need paediatric palliative care? An evaluation of utility and feasibility of the Paediatric Palliative Screening scale (PaPaS). BMC Palliat Care. 2020;19:18. DOI: https://doi.org/10.1186/s12904-020-0524-4

Beaton DE, Bombardier C, Guillemin F, Ferraz MB. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine. 2000;25:3186-91. DOI: https://doi.org/10.1097/00007632-200012150-00014

Sousa VD, Rojjanasrirat W. Translation, adaptation and validation of instruments or scales for use in cross-cultural health care research: a clear and user-friendly guideline. J Eval Clin Pract. 2011;17:268-74. DOI: https://doi.org/10.1111/j.1365-2753.2010.01434.x

Borsa J, Damásio BF, Bandeira DR. Adaptação e validação de instrumentos psicológicos entre culturas: algumas considerações. Paidéia. 2012;22;423-32. DOI: https://doi.org/10.1590/S0103-863X2012000300014

Cadamuro SA, Franco JO, Paiva CE, de Oliveira CZ, Paiva BS. Symptom screening in paediatrics tool for screening multiple symptoms in Brazilian

patients with cancer: a cross-sectional validation study. BMJ Open. 2019;9:e028149. DOI: https://doi.org/10.1136/bmjopen-2018-028149

Guimarães RC, Sarsfield Cabral JA. Estatística. 2ª ed. Lisboa: Verlag Dashöfer; 2010.

Maroco J. Análise estatística com o SPSS Statistics. 5ª ed. Pêro Pinheiro: ReportNumber; 2011.

Pestana MH, Gageiro JN. Análise de dados para Ciências Sociais - complementaridade do SPSS. 5ª ed. Lisboa: Ed Sílabo; 2008.

Anastasi A. Psychological testing. 3rd rd. New York: McMillan; 1990.

DeVellis RF. Scale development. Theory and applications. 3rd ed. London: Sage Publications; 1991.

Hill M, Hill A. Investigação por questionário. 2ª ed. Lisboa: Sílabo; 2002.

Muñiz J. Teoria clássica de los tests. Madrid: Pirâmide; 2003.

Muñiz J, Fidalgo AM, García-Cueto E, Martinez RJ, Moreno R. Análisis de los ítems. Madrid: La Muralla; 2005.

Nunnaly JC. Psychometric theory. New York: McGraw-Hill; 1978.

Steenkamp J, Trijp H. The use of LISREL in validating marketing constructs. Int J Res Mark. 1991;8:283-99. DOI: https://doi.org/10.1016/0167-8116(91)90027-5

Boateng GO, Neilands TB, Frongillo EA, Melgar-Quiñonez HR, Young SL. Best practices for developing and validating scales for health, social, and behavioral research: a primer. Front Public Health. 2018;6:149. DOI: https://doi.org/10.3389/fpubh.2018.00149

Bagozzi RP. Causal models in marketing. New York: Wiley; 1980.

Bentler P. Multivariate analysis with latent variables: causal modeling. Annu Rev Psychol.1980;31:419-56. DOI: https://doi.org/10.1146/annurev.ps.31.020180.002223

Bentler P, Chou C. Practical issues in structural equation modeling. SMR. 1987;16:78-117. DOI: https://doi.org/10.1177/0049124187016001004

Edwards JR. The fallacy of formative measurement. ORM. 2011;14:370-88. DOI: https://doi.org/10.1177/1094428110378369

Gujarati D. Econometria básica. 5ªed. São Paulo: Makron; 2000.

Hair J, Anderson R, Tatham R, Black W. Multivariate data analysis. 5th ed. Upper Saddle River: Prentice-Hall; 1998.

Kline RB. Principles and practice of structural equation modeling. New York: The Guilford Press; 1998.

Treiblmaier H, Bentler PM, Mair P. Formative constructs implemented via common factors. Struct Equ Modelin. 2011;18:1-17. DOI: https://doi.org/10.1080/10705511.2011.532693

Luque T. Técnicas de análisis de datos en investigación de mercados. 2ª ed. Madrid: Ediciones Pirámide; 2000.

Hair J, Anderson R, Tatham R, Black W. Análisis multivariante. New York: Prentice Hall; 1999.

Bagozzi R, Yi Y. On the evaluation of structural equation models. JAMS. 1988;16:74-94. DOI: https://doi.org/10.1007/BF02723327

Fornell C, Larker DF. Evaluating structural equation models with unobservable variables and measurement error. J Mark Res. 1981;18:39-50. DOI: https://doi.org/10.1177/002224378101800104

Arbuckle J, Wothke W. AMOS 5.0: User’s guide. Chicago: Smallwaters Corporation; 2003.

Karjaluoto H, Mattil M, Pento T. Factors underlying attitude formation towards online banking in Finland. Int J Bank Mark. 2002;20:261-72. DOI: https://doi.org/10.1108/02652320210446724

Kline RB. Principles and practice of structural equation modeling. 2nd ed. New York: Guilford Press; 2005.

Thompson B. Ten commandments of structural equation modeling. Reading and understanding MORE multivariate statitiscs. Washington: Ed L Grimm & P.R Yarnold; 2000. p. 261-84.

McDonald RP, Ho MH. Principles and practice in reporting structural equation analyses. Psychol Methods. 2002;7:64-82. DOI: https://doi.org/10.1037/1082-989X.7.1.64

Hooper D, Coughlan J, Mullen MR. Structural equation modelling: guidelines for determining model fit. EJBRM. 2002;6:53-60.

Together for Short Lives. Children’s palliative care definitions. 2014. [consultado 2019 nov 02]. Disponível em: http://www.together for shortslives.org.uk/profession-als/childrens_palliative_care_essentials/definitions.

Sharma R, Sharma G, Sharma D, Kumar P, Sharma J. To assess the need of palliative care in children with life limiting diseases using Paediatric Palliative Screening scale (PaPaS Scale). JMSCR. 2018;06:191–7. DOI: https://doi.org/10.18535/jmscr/v6i3.34

Song IG, Kwon SY, Chang YJ, Kim MS, Jeong SH, Hahn SM, 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. DOI: https://doi.org/10.1186/s12904-021-00765-8

Published

2023-01-09

How to Cite

1.
Simões MJP, Tavares F, Machado M do C. Validation of the European Portuguese Version of a Pediatric Palliative Needs Assessment Tool: The Pediatric Palliative Screening Scale. Acta Med Port [Internet]. 2023 Jan. 9 [cited 2024 Nov. 24];36(5):326-35. Available from: https://actamedicaportuguesa.com/revista/index.php/amp/article/view/18071

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