Adaptação transcultural e validade de conteúdo do instrumento de apoio à decisão “Making Choices: Feeding Options for Patients with Dementia” para a língua portuguesa do Brasil
Cross-cultural adaptation and content validity of the the patient decision aid “Making Choices: Feeding Options for Patients with Dementia” to Brazilian Portuguese language
Rodrigo D’Agostini Derech, Fabricio Souza Neves
Resumo
Objetivo: Realizar adaptação transcultural para o português brasileiro e verificar a validade de conteúdo de um instrumento de apoio à decisão originalmente produzido em língua inglesa (Making Choices: Feeding Options for Patients with Dementia), para auxiliar a escolha da via de alimentação de pacientes com disfagia por demência em estágio grave. Método: Foi realizada a adaptação transcultural com duas traduções independentes do instrumento original, síntese das traduções, duas retrotraduções independentes, nova síntese e pré-teste com 30 cuidadores para produção da versão final em língua portuguesa. A validação de conteúdo da versão final foi realizada com a análise por um comitê de 35 especialistas (médicos, fonoaudiólogos e enfermeiros brasileiros com experiência no manejo de pacientes com demência em estágio grave) e baseada no índice de validade de conteúdo e na concordância entre múltiplos avaliadores pelo kappa de Fleiss. Resultados: O nível de compreensão do instrumento pelos cuidadores foi adequado em todas as suas seções e seu conteúdo foi considerado válido pelo comitê de especialistas, de forma estatisticamente significativa. Conclusão: O instrumento produzido de apoio à decisão para a escolha da via de alimentação em pacientes com demência grave e disfagia, denominado “Fazendo escolhas: opções de alimentação para pacientes com demência” obteve evidências de equivalência transcultural e de validade de conteúdo para uso na população brasileira. Novos estudos são necessários para avaliar seus efeitos sobre o processo de tomada de decisão em nossa população.
Palavras-chave
Abstract
Purpose: Cross-cultural adaptation to Brazilian Portuguese and evaluation of content validity of a patient decision aid to help in choosing the feeding route for patients with severe dementia entitled “Making Choices: Feeding Options for Patients with Dementia”. Methods: The cross-cultural adaptation involved two independent translations, synthesis of translations, two independent back-translations, their synthesis, and pretest with 30 caregivers. Content validation was based on analyzes of 35 Brazilian specialists (physicians, speech-language therapists and nurses experienced in caring for patients with severe dementia) through measures of content validity index and concordance between multiple judges by Fleiss’ kappa. Results: The level of comprehension of the instrument by caregivers in the pretest was almost perfect. The specialists committee considered the contents of the instrument valid, in a statistically significant way. Conclusion: The patient decision aid in Brazilian Portuguese entitled “Fazendo escolhas: opções de alimentação para pacientes com demência” obtained evidence of cross-cultural equivalence and content validity for use in the Brazilian population. Further studies are needed to assess its effects on the decision-making process in our population
Keywords
Referencias
1. Mitchell SL. Advanced dementia. N Engl J Med. 2015;373(13):1276-7. http://dx.doi.org/10.1056/NEJMcp1412652. PMid:26398084.
2. Cintra MT, Rezende NA, Moraes EN, Cunha LC, Gama Torres HO. A comparison of survival, pneumonia, and hospitalization in patients with advanced dementia and dysphagia receiving either oral or enteral nutrition. J Nutr Health Aging. 2014;18(10):894-9. http://dx.doi.org/10.1007/s12603- 014-0487-3. PMid:25470805.
3. Mitchell SL, Mor V, Gozalo PL, Servadio JL, Teno JM. Tube feeding in US nursing home residents with advanced dementia, 2000-2014. JAMA. 2016;316(7):769-70. http://dx.doi.org/10.1001/jama.2016.9374. PMid:27533163.
4. Sampson EL, Candy B, Jones L. Enteral tube feeding for older people with advanced dementia. Cochrane Database Syst Rev. 2009;(2):CD007209. http://dx.doi.org/10.1002/14651858.CD007209.pub2. PMid:19370678.
5. Arcand M. End-of-life issues in advanced dementia: part 1: goals of care, decision-making process and family education. Can Fam Physician. 2015;61(4):330-4. PMid:25873700.
6. Douglas JW, Lawrence JC, Turner LW. Social ecological perspectives of tube-feeding older adult with advanced dementia: a systematic literature review. J Nutr Gerontol Geriatr. 2017;36(1):1-17. http://dx.doi.org/10.10 80/21551197.2016.1277174. PMid:28140779.
7. Derech RD, Neves FS. Shared decision-making when choosing the feeding method of patients with severe dementia: a systematic review. Rev Bras Geriatr Gerontol. 2018;21(2):232-42. http://dx.doi.org/10.1590/1981- 22562018021.170169.
8. Stacey D, Légaré F, Lewis K, Barry MJ, Bennett CL, Eden KB, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2017;4:CD001431. http://dx.doi.org/10.1002/14651858. CD001431.pub5. PMid:28402085.
9. Abreu MM, Battisti R, Martins RS, Baumgratz TD, Cuziol M. Shared decision making in Brazil: history and current discussion. Z Evid Fortbild Qual Gesundhwes. 2011;105(4):240-4. http://dx.doi.org/10.1016/j. zefq.2011.04.009. PMid:21620315.
10. Beaton DE, Bombardier C, Guillemin F, Ferraz MB. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine. 2000;25(24):3186-91. http://dx.doi.org/10.1097/00007632-200012150- 00014. PMid:11124735.
11. Fortes CPDD, Araújo APQC. Check list para tradução e Adaptação Transcultural de questionários em saúde. Cad Saude Colet. 2019;27(2):202- 9. http://dx.doi.org/10.1590/1414-462x201900020002.
12. Hanson LC, Carey TS, Caprio AJ, Lee TJ, Ersek M, Mitchell SL, et al. Making choices: feeding options for patients with dementia [Internet]. 2011 [citado em 2017 Mar 11]. Disponível em: https://decisionaid.ohri. ca/docs/das/Feeding_Options.pdf
13. Mitchell SL, Tetroe J, O’Connor AM. A decision aid for long-term tube feeding in cognitively impaired older persons. J Am Geriatr Soc. 2001;49(3):313-6. http://dx.doi.org/10.1046/j.1532-5415.2001.4930313.x. PMid:11300244.
14. Hanson LC, Carey TS, Caprio AJ, Lee TJ, Ersek M, Garrett J, et al. Improving decision-making for feeding options in advanced dementia: a randomized, controlled trial. J Am Geriatr Soc. 2011;59(11):2009-16. http://dx.doi.org/10.1111/j.1532-5415.2011.03629.x. PMid:22091750.
15. Crocker L. Content validity. In: Wright JD, editor. International Encyclopedia of the Social & Behavioral Sciences. 2nd ed. Amsterdam: Elsevier; 2015. p. 2702-5. (vol. 4). http://dx.doi.org/10.1016/B978-0-08-097086-8.44011-0.
16. Berry DL, Halpenny B, Bosco JL, Bruyere J Jr, Sanda MG. Usability evaluation and adaptation of the e-health Personal Patient Profile-Prostate decision aid for Spanish-speaking Latino men. BMC Med Inform Decis Mak. 2015;15(1):56. http://dx.doi.org/10.1186/s12911-015-0180-4. PMid:26204920.
17. Fortnum D, Grennan K, Smolonogov T. End-stage kidney disease patient evaluation of the Australian ‘My Kidneys, My Choice’ decision aid. Clin Kidney J. 2015;8(4):469-75. http://dx.doi.org/10.1093/ckj/sfv050. PMid:26251720.
18. Abhyankar P, Volk RJ, Blumenthal-Barby J, Bravo P, Buchholz A, Ozanne E, et al. Balancing the presentation of information and options in patient decision aids: an updated review. BMC Med Inform Decis Mak. 2013;13(S2, Supl Suppl 2):S6. http://dx.doi.org/10.1186/1472-6947-13-S2-S6. PMid:24625214.
19. Lynn MR. Determination and quantification of content validity. Nurs Res. 1986;35(6):382-6. http://dx.doi.org/10.1097/00006199-198611000-00017. PMid:3640358.
20. Yaguchi A, Truog RD, Curtis JR, Luce JM, Levy MM, Mélot C, et al. International differences in end-of-life attitudes in the intensive care unit: results of a survey. Arch Intern Med. 2005;165(17):1970-5. http://dx.doi. org/10.1001/archinte.165.17.1970. PMid:16186466.
21. van der Steen JT, Hertogh CM, de Graas T, Nakanishi M, Toscani F, Arcand M. Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: sensitive topics revised before implementation. J Med Ethics. 2013;39(2):104-9. http://dx.doi.org/10.1136/medethics-2012-100903. PMid:23144015.
22. Albrecht K, Simon D, Buchholz A, Reuter K, Frosch D, Seebauer L, et al. How does a German audience appraise an American decision aid on early stage breast cancer? Patient Educ Couns. 2011;83(1):58-63. http://dx.doi. org/10.1016/j.pec.2010.04.038. PMid:20627441.
23. Teno JM, Gozalo P, Trivedi AN, Bunker J, Lima J, Ogarek J, et al. Site of Death, Place of Care, and Health Care Transitions Among US Medicare Beneficiaries, 2000-2015. JAMA. 2018;320(3):264-71. http://dx.doi. org/10.1001/jama.2018.8981. PMid:29946682.
24. Camarano A, Kanso S. As instituições de longa permanência para idosos no Brasil. Rev Bras Estud Popul. 2010;27(1):232-5. http://dx.doi.org/10.1590/ S0102-30982010000100014.
25. Pernambuco L, Espelt A, Magalhães HV Jr, Lima KC. Recomendações para elaboração, tradução, adaptação transcultural e processo de validação de testes em Fonoaudiologia. CoDAS. 2017;29(3):e20160217. http://dx.doi. org/10.1590/2317-1782/20172016217. PMid:28614460.
26. Chenel V, Mortenson WB, Guay M, Jutai JW, Auger C. Cultural adaptation and validation of patient decision aids: a scoping review. Patient Prefer Adherence. 2018;12:321-32. http://dx.doi.org/10.2147/PPA.S151833. PMid:29535507.
27. Kuraoka Y, Nakayama K. A decision aid regarding long-term tube feeding targeting substitute decision makers for cognitively impaired older persons in Japan: a small-scale before-and-after study. BMC Geriatr. 2014;14(1):16. http://dx.doi.org/10.1186/1471-2318-14-16. PMid:24495735.
28. Alexandre NMC, Coluci MZO. Validade de conteúdo nos processos de construção e adaptação de instrumentos de medidas. Cien Saude Colet. 2011;16(7):3061-8. http://dx.doi.org/10.1590/S1413-81232011000800006.
29. Abreu MM, Mello JPS, Ribeiro LFF, Mussi LA, Borges MLL, Petroli M, et al. Shared decision making in Brazil: concrete efforts to empower the patients’ voice. Z Evid Fortbild Qual Gesundhwes. 2017;123-124:21-2. http://dx.doi.org/10.1016/j.zefq.2017.05.022.
30. Elwyn G, Cochran N, Pignone M. Shared decision making: the importance of diagnosing preferences. JAMA Intern Med. 2017;177(9):1239-40. http:// dx.doi.org/10.1001/jamainternmed.2017.1923. PMid:28692733.
Submitted date:
19/02/2020
Accepted date:
17/06/2020
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