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

ABSTRACT BACKGROUND: The Quality of Dying and Death Questionnaire (QoDD) may prove to be an important evaluation tool in the Brazilian context, and, therefore, can contribute to a more precise evaluation of the dying and death process, improving and guiding the end-of-life patient care. OBJECTIVE: To translate and cross-culturally adapt the QoDD into Brazilian Portuguese and measure its validity (convergent and known-groups) and internal consistency DESIGN AND SETTING: A cross-sectional, methodological study was conducted at the Hospital de Câncer de Barretos, Brazil METHODS: A total of 78 family caregivers participated in this study. Semantic, cultural, and conceptual equivalences were evaluated using the content validity index. The construct validity was assessed through convergent validation and known groups analysis [presence of family members at the place of death; feel at peace with dying; and place of death (hospital versus home; hospital versus Palliative Care)]. Internal consistency was evaluated using Cronbach's alpha. RESULTS: The questionnaire was translated into Brazilian Portuguese and presented evidence of a clear understanding of its content. Cronbach's alpha values were ≥ 0.70, except for the domains of treatment preference (α = 0.686) and general concerns (α = 0.599). The convergent validity confirmed a part of the previously hypothesized correlations between the Palliative Care Outcome Scale-Brazil (POS-Br) total scores and the QoDD domain scores. The QoDD-Br domains could distinguish the patients who died in palliative care and general wards. CONCLUSION: The QoDD-Br is a culturally adapted valid instrument, and may be used to assess the quality of death of cancer patients.

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.

BACKGROUND: The Quality of Dying and Death Questionnaire (QoDD) may prove to be an important evaluation tool in the Brazilian context, and, therefore, can contribute to a more precise evaluation of the dying and death process, improving and guiding the end-of-life patient care. OBJECTIVE: To translate and cross-culturally adapt the QoDD into Brazilian Portuguese and measure its validity (convergent and known-groups) and internal consistency. DESIGN AND SETTING: A cross-sectional, methodological study was conducted at the Hospital de Câncer de Barretos, Brazil. METHODS: A total of 78 family caregivers participated in this study. Semantic, cultural, and conceptual equivalences were evaluated using the content validity index. The construct validity was assessed through convergent validation and known groups analysis [presence of family members at the place of death; feel at peace with dying; and place of death (hospital versus home; hospital versus Palliative Care)]. Internal consistency was evaluated using Cronbach's alpha. RESULTS: The questionnaire was translated into Brazilian Portuguese and presented evidence of a clear understanding of its content. Cronbach's alpha values were ≥ 0.70, except for the domains of treatment preference (α = 0.686) and general concerns (α = 0.599). The convergent validity confirmed a part of the previously hypothesized correlations between the Palliative Care Outcome Scale-Brazil (POS-Br) total scores and the QoDD domain scores. The QoDD-Br domains could distinguish the patients who died in palliative care and general wards. CONCLUSION: The QoDD-Br is a culturally adapted valid instrument, and may be used to assess the quality of death of cancer patients.

Characteristics of Palliative Care Publications by South American Authors in the Last 20 Years: Systematic Literature Review With Bibliometric Analysis.

CONTEXT: Research on palliative care (PC) can be used as a direct measure to assess the level of PC development in a country or region. OBJECTIVES: To investigate the scientific production in the field of PC in South American countries over the last two decades. METHODS: The search was performed using the terms "palliative care," "hospice care," "hospices," and "terminal care" combined with the names of South American countries in several databases. The trend in publications over time was analyzed by linear equations (R2) and by calculating the annual percentage change (APC). The article citations were extracted from Web of Science (WOS), Scopus and Google Scholar, and the countries' impact factors (IFc) were calculated. RESULTS: Of the 4259 identified articles, 641 were included in the analysis. There was a clear increase in the number of publications over the analyzed period (R2 = 0.8794, APC = 14.42%). Brazil was the country with the highest number of publications (n = 389); however, after adjustments by population, GDP and number of researchers, Chile was the country with the greatest prominence, including the highest IF in WOS (4.409). Only 8.3% of publications were systematic review, clinical trial or cohort studies; only 15.4% were funded. CONCLUSION: This bibliometric review identified an annual increase of 14% in the number of scientific publications by researchers from South America over the last 20 years. Although Brazil produced the most articles, Chile, had the most efficient scientific production. In general, the articles had low potential for scientific impact.

Symptom screening in paediatrics tool for screening multiple symptoms in Brazilian patients with cancer: a cross-sectional validation study.

OBJECTIVE: The objective of this study was to translate, culturally adapt and validate the Symptom Screening in Paediatrics Tool (SSPedi) into the Brazilian Portuguese language to be used by paediatric oncology patients in Brazil. DESIGN: A descriptive, cross-sectional study that follows an established methodology for translation and cultural adaptation, developed in two phases: phase I, linguistic translation and cultural adaptation of the SSPedi scale and phase II, psychometric properties evaluation. SETTING: Children's Hospital for Cancer Treatment in Latin America. PARTICIPANTS: Paediatric patients between 7 and 18 years of age and proxies of patients between 2 and 6 years of age, diagnosed with cancer and undergoing chemotherapy treatment. Patients and proxies with significant neuropsychiatric disorders and/or visual impairment that prevented the ability to read were excluded. PRIMARY OUTCOME MEASURES: Construct validation of SSPedi using convergent validity and contrasted groups. Reliability was evaluated using Cronbach's alpha test and assessing the retest using the intraclass correlation coefficient (ICC). RESULTS: The psychometric properties of the symptom screening tool were evaluated using 157 participants, of which 116 were patients and 41 were proxies. Convergent validity and hypothesised correlations (Spearman's r>0.4) were confirmed for both self- and proxy-reported versions of the assessment tool. No significant differences found between the two contrasting groups. Assessment of SSPedi resulted in an internal consistency of reliability of α=0.77 (95% CI 0.70 to 0.82) for the self and α=0.81 (95% CI 0.71 to 0.88) for the proxy and overall reproducibility ICC values of (95% CI), 0.54 (0.15 to 0.77) and 0.77 (0.64 to 0.86). CONCLUSION: SSPedi was found to be culturally and linguistically adaptable and considered valid and reliable for use by paediatric oncology patients in Brazil. The new translated and adapted version was named SSPedi-BR.