Validation of the Quality of Dying and Death Questionnaire (QoDD) for the Portuguese Language (Brazil)

• Grant number: 18/08929-2
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Effective date (Start): October 01, 2018
• Effective date (End): September 30, 2019
• Field of knowledge: Health Sciences - Medicine - Medical Clinics
• Principal Investigator: Bianca Sakamoto Ribeiro Paiva
• Grantee: Tais Cruz de Melo
• Host Institution: Hospital do Câncer de Barretos. Fundação Pio XII (FP). Barretos , SP, Brazil

Abstract

There is an important concern with the quality of life of people affected by cancer, since not only the disease, but especially the treatment can interfere with their lives. There is still progress in research and routine evaluations of patients' quality of life, but the issue of quality of death and changes in clinical practice for a worthy death in Brazil have not been addressed. Quality of death has been attributed directly to the need for absence of pain in the end-of-life period. There is a consensus, however, that it is more than controlling physical symptoms such as pain, but rather multiple dimensions inherent in this process, such as family, religious and cultural. Despite the important theme, in Brazil there is no instrument to evaluate the quality of death. The Quality of Dying and Death Questionnaire (QoDD) is an objective measure for this evaluation and may become useful in clinical practice. It is an evaluation instrument composed of six conceptual domains: symptoms and personal care, preparation for death, time of death, family, treatment preferences and general concerns, covering 31 aspects that currently have 40 items. It is the most used in the world for evaluation of Death Quality and has not yet been validated for use in the Brazilian population. Objective: To validate the Quality of Dying and Death Questionnaire (QoDD) for application in the Brazilian population. Materials and methods: Descriptive, cross-sectional and methodological study (validation of evaluation instrument). It is being developed in three complementary stages. The validation process was authorized by the original author of QoDD, Dr.Lois Downey, of the University of Washington (USA). Stage II: Translation and cross-cultural adaptation of QoDD following the methodology of Beaton and collaborators: translation, synthesis, back translation, review by a committee of experts and pre-test (participants contacted 4 to 12 weeks after death of the cancer patient), a process already carried out in a first research project; and Phase III (methodology of this research project): Evaluation of the psychometric properties of the QoDD through the reliability of the translated and adapted version of the QoDD, verifying the stability and internal consistency, the validity constructed through the analysis of known groups and additionally an analysis exploratory factorial. Partial results: QoDD was translated from the English language into the Portuguese language by two independent translators (T1 and T2), with an advanced knowledge of the English language. Following the process of synthesis of translations, back translation and cultural adaptation of the questionnaire. The evaluation by the committee of experts resulted in an average of 0.8 concordance in relation to the semantic, cultural and conceptual equivalences. 28 family caregivers participated in the pre-test, no doubts were identified regarding the instrument, and 75% (21) of the participants presented a 100% agreement in the pre-test phase. In this way, the QoDD is culturally adapted and follows the process of evaluation of the psychometric properties to validate the questionnaire.

Scientific publications

(References retrieved automatically from Web of Science and SciELO through information on FAPESP grants and their corresponding numbers as mentioned in the publications by the authors)

BIANCA SAKAMOTO RIBEIRO PAIVA; TALITA CAROLINE DE OLIVEIRA VALENTINO; MIRELLA MINGARDI; MARCO ANTONIO DE OLIVEIRA; JULIA ONISHI FRANCO; MICHELLE COUTO SALERNO; HELENA PALOCCI; TAIS CRUZ DE MELO; CARLOS EDUARDO PAIVA. Translation, Validity and Internal Consistency of the Quality of Dying and Death Questionnaire for Brazilian families of patients that died from cancer: a cross-sectional and methodological study. São Paulo Medical Journal, 2022-11-21. (18/08929-2, 16/11922-4)