Psychometric validation of Quality of Dying and Death in Brazilian family members

doi:10.21203/rs.3.rs-1993861/v1

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Psychometric validation of Quality of Dying and Death in Brazilian family members

https://doi.org/10.21203/rs.3.rs-1993861/v1

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Context: Death is a complex, subjective phenomenon that requires the understanding of experiences to provide care and qualification of the end-of-life process.

Objective: To analyze the psychometric properties of the portuguese version (Brazil) of the Quality of Dying and Death (QODD) scale on family members of patients who died in adult intensive care units.

Methods: A methodological study was conducted with 326 family members of patients that died in three ICUs of public hospitals in the state of SP, Brazil. For such, the QODD 3.2a (25 items and six domains) was administered in the period from December 2020 to March 2022. The analysis was performed using the classic theory of tests as well as exploratory factor analysis. The goodness of fit of the model was tested using confirmatory factor analysis. Concurrent validity was evaluated using Spearman’s correlation coefficients between the scores of the overall scale and domains. Cronbach’s alpha coefficient and the intraclass correlation coefficient (ICC) were used for the evaluation of internal consistency and temporal stability, respectively.

Results: Horn’s parallel analysis indicated two factors that were not confirmed in the exploratory factor analysis. A single factor retained 18 of the initial 25 items and the analysis of the goodness of fit to the unidimensional model resulted in the following: CFI = 0.7545, TLI = 0.690, chi-squared = 767.33, df = 135, RMSEA = 0.121 with 90%CI and p = 5.04409e-98. The inter-item correlations indicated a predominance of weak correlations among the items of the instrument. The items with the largest number of moderate correlations were questions 13b, 9b and 10b and a strong correlation was found between questions 15b and 16b. Cronbach’s alpha coefficient was 0.8 and the ICC was 0.9.

Conclusion: The Quality of Dying and Death – Version 3.2a (intensive therapy) in Brazilian Portuguese has a unidimensional structure and acceptable reliability, but did not obtain a good fit to the proposed factorial model.

Validation studies

Psychometrics

Death

Quality.

The process of dying has always been permeated with numerous reflections involving subjectivity, the conception of a good death and end-of-life care. Aspects such as the transference of the patient to the hospital setting, the anxiety of those involved and the care provided by the health team bring to the surface new meanings and the daily imparity that entwines human life.^(1–3)

Facing death and discussions on the quality of dying have become indisputably necessary for the offer of greater understanding and the concreteness of elements up until then rooted in individual and family experiences.^{(2, 3)} The need to understand such phenomena and, above all, qualify them constitutes a daunting challenge.^{(3, 4)} Thus, different strategies have been adopted to measure the context of the dying process. This generally directs the eye of the researcher to family perceptions, as they tend to portray the process of death by indicating crucial elements that can qualify it as a positive experience or not, even though posthumously.^{(4, 5)}

Quality of Dying and Death (QODD) is an instrument with an operational and conceptual model first developed in 2001 by researchers of the University of Washington in the city of Seattle, USA.The scale was created to measure the quality of death and dying as well as evaluate the perceptions of family members and/or caregivers regarding the death of a loved one.^{(6, 7)}

The initial instrument was composed of 31 items divided among six domains. The total score ranged from 0 to 100, with higher scores indicative of greater quality. During the initial validation process, the domain scores had an average of 67.36 points and Cronbach’s alpha coefficient for the total score was 0.86.^{(6, 8)} A subsequent study was conducted in 2010 involving confirmatory factor analysis and the exploratory study.⁽⁹⁾

Due to its relevance in the context in which it is applied, the QODD has been translated and validated for several languages, including Spanish, German, Chinese and Persian, with versions containing 31, 25 and 14 items.^(10–13)

QODD version 3.2a was created after the elimination of nine items evaluated as unsuitable for the intensive care setting, which resulted in a 22-item instrument applicable in the intensive care unit (ICU). The same classification was maintained (with a scale of zero to ten to represent a “terrible experience” or “nearly perfect experience”, respectively). Besides these 22 items, three others were added to improve the instrument, maintaining the reliability of the original instrument.⁽¹⁴⁾

Thus, QODD version 3.2a has 25 items and six domains. Twenty-two items address aspects related to the experience of the respondent in the last days of the loved one’s life and three items address the quality of care provided by the health team and quality of the dying process. ^2,6)

The present study intends to give continuity to the validation process to evaluate the representativeness of the QODD 3.2a as a valid instrument for measuring the construct of what it indeed proposes to measure^{(15, 16)} after the cultural adaptation and content validation for the Brazilian context.⁽¹⁷⁾ Thus, the aim of this study was to analyze the psychometric properties of the Brazilian Portuguese version of the QODD 3.2a for family members of patients who died in adults intensive care units.

A methodological study was conducted at three public hospitals in the state of SP, Brazil in the period between December 2020 and March 2022. Authorization was obtained from the authors for the translation and validation of the instrument.

Participants

The inclusion criteria were: family members or caregivers (formal/informal), age 18 years or older, both sex, having accompanied the process of death of the patient occurred between 30 and 90 days earlier and consent to participate in the study. Individuals who reported not having the emotional strength to participate in the study and those who were not located were excluded.

Although there is no gold standard for sample size when validating a new instrument, the recommendation is that the sample should be at least four to ten times the number of items with a minimum sample of 100 individuals, to ensure an appropriate validity analysis⁽¹⁸⁾. Our final analytical sample was comprised of 326 participants.

The invitation to participate in the study was initially performed by telephone. Following acceptance, permission was requested to send the statement of informed consent by e-mail or an electronic message application. Subsequently, one of the researchers made second telephone contact, which had been previously scheduled. If there was agreement to participate through the signed statement of informed consent, the researcher administered the QODD 3.2a that had been translated and adapted to Brazilian Portuguese.

Data collection

In this instrument questions 1 to 22 are subdivided into two parts identified as “a” and “b” with the following standard answers:

Questions 1-10a: answers are scored on an scale from 0 to 6.
Questions 11-21a: answers are scored on a scale ranging from 0 (yes) to 3 (I don’t know).
Question 22a: the participant indicates how the loved one was at the moment of death using a nominal scale ranging from 1 (awake) to 4 (I don’t know).
Questions 1b-22b: answers are scored on a Likert scale ranging from 0 (terrible experience) to 10 (nearly perfect experience), but may not be answered depending on the answer given in part “a” of the item.
Questions 23, 24 and 25 do not have subdivisions and the answers also range from 0 to 10.

For purposes of analysis, answers to “b” questions as well as questions 23, 24 and 25 were considered, as these questions have the same answer pattern. The total score was obtained for the classification of the patient’s experience of dying by the sum of the items and division by the number of items effectively answered. This result was then divided by ten (total score of each item) and multiplied by 100, resulting in a range of zero to 100 points, with higher points denoting a better quality of death.

For the evaluation of temporal stability, a retest was performed with 20 family members.⁽¹⁹⁾ For such, the random selection method was adopted and telephone contact was made seven to 14 days after the first interview.

Statistical analysis

All variables were initially described. The Kolmogorov-Smirnov test was used to determine the distribution (normal or non-normal) of continuous variables.⁽²⁰⁾ The QODD 3.2 items were evaluated in terms of percentage and the distribution of losses using Little’s test,⁽²¹⁾ as not all “b” questions were answered due to the structuring of the questionnaire. Imputation of missing data was performed using the substitution of means method.

Reliability

Internal consistency was analyzed using Cronbach’s alpha coefficient⁽²²⁾ and temporal stability (test-retest) was analyzed using the intraclass coefficient (ICC)⁽²³⁾ for perfect agreement. Values > 0.7 were considered acceptable for both.^{(24, 25)}

Construct validation: Exploratory factor analysis (EFA) was initially performed, as the authors of the scale did not explore its structure after the reduction of the items on the original instrument. Adequacy of the sample was evaluated using the KaiserMeyerOlkin (KMO) test^{(23, 26, 27)} and viability was evaluated using Barlett’s test.⁽²⁸⁾ Values > 0.8 were considered acceptable. Horn’s parallel analysis was used to determine the number of factors/components to be extracted; factors with eigenvalues greater than 1.0 were extracted.⁽²⁹⁾ Two criteria were considered in the EFA for the maintenance of items/factors: items with absolute factor loading higher than 0.3 in only one factor and factors to which three or more items were linked.⁽²⁸⁾

Confirmatory factor analysis (CFA) was then performed to evaluate the new construct of extracted items, including the goodness of fit of the models adopted, which was considered based on the evaluation of the root mean square error of approximation (RMSEA ≤ 0.08), Comparative Fit Index (CFI ≥ 0.90), Tucker-Lewis Index (TLI ≥ 0.90) and the chi-squared test of adequacy with p ≥ 0.05.^(25,28,30) Oblimin was the rotation method adopted.⁽³¹⁾

Convergent validity was analyzed using Spearman’s correlation coefficient between the scores of the factor and the items on the instrument. Values < 0.4, 0.4 to 0.6 and > 0.6 were respectively indicative of weak, moderate and strong correlations.⁽²⁴⁾ The average variance extracted (AVE) was also calculated, based on Fornell & Larcker.⁽³²⁾

The data from the participants were tabulated on electronic spreadsheets and analyses were performed in R version 4.1.1. The significance level was set at 5% (p < 0.05).

This study received approval from the Human Research Ethics Committee of the Botucatu School of Medicine (certificate number: 2.772.325) and was conducted following the guidelines of Standards for Quality Improvement Reporting Excellence (SQUIRE 2.0)⁽³³⁾ and COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN)⁽³⁴⁾.

Sociodemographic characterization of sample

A total of 529 deaths that occurred in the study period met the eligibility criteria. However, 203 were excluded (132 due to refusals to participate and 71 due to the impossibility of locating or contacting the family member). Thus, the sample was composed of 326 participants.

Women predominated in the sample (n = 210; 64.4%). Mean age was 45 years. The majority was White (n = 229; 70.2%) and had a complete high school education (n = 175; 53.7%). There was a predominance of sons/daughters (n = 177; 54.3%) and spouses (n = 48; 14.7%) who did not reside with the patient (n = 64; 19.6%). Women, Whites, a high school education and mean age of 45 years were also predominant at the retest (Table 1).

Table 1

Sociodemographic characteristics of participants in different phases of study.
Variables	Validation (n = 326)	Retest (n = 20)
Age*	45 (13.7)	45.5 (13.0)
Sex**
Male	116 (35.6%)	5 (25%)
Female	210 (64.4%)	15 (75%)
Sex of loved one **
Male	190 (58.3%)	8 (40%)
Female	136 (41.7%)	12 (60%)
Brazilian nationality **
Yes	324 (99.4%)	19 (95%)
No	2 (0.6%)	1 (5%)
Ethnicity**
White	229 (70.2%)	12 (60%)
Black	23 (7.1%)	1 (5%)
Yellow	2 (0.6%)	0 (0.0)
Brown	69 (21.2%)	7 (35%)
Indigenous	2 (0.6%)	0. (0.0)
Other	1 (0.3%)	0. (0.0)
Schooling**
Illiterate	27 (8.3%)	4 (20%)
Primary school	34 (10.4%)	2 (10%)
High school or trade school	175 (53.7%)	12 (60%)
Higher education	72 (22.1%)	1 (5%)
Postgraduate degree	18 (5.5%)	1 (5%)
Degree of relatedness**
Spouse or companion	48 (14.7%)	2 (10%)
Son/daughter	177 (54.3%)	8 (40%)
Brother	22 (6.7%)	1 (5%)
Parent	8 (2.5%)	9 (45%)
Other relative	67 (20.5%)	0 (0.0)
Friend	4 (1.2%)	0 (0.0)
Resided with loved one **
Yes	48 (14.7%)	15 (75%)
No	64 (19.6%)	5 (25%)
Knew loved one for (years)*	37.7 (16.2)	34.4 (15.0)
* Mean (SD) / ** n (%)

Construct validity

The analysis of psychometric properties was performed with questions that had answers ranging from 0 to 10. Little’s test was then applied for the determination of random missing data (items not answered due to the corresponding “a” answer) (p = 0.77). Imputation of missing data (n = 189) was then performed with the mean of the variables.

Exploratory factor analysis (EFA)

The result of the KMO test was 0.87 and Barlett’s sphericity was 3090.83 (p < 0.0001), confirming the adequacy of the sample for EFA. Horn’s parallel analysis indicated two oblique factors with eigenvalues greater than 1.0 (Fig. 1). Six outliers were detected and excluded based on the Mahalanobis distance criterion at the 0.1% level.

EFA was performed to determine how the items were grouped in relation to the factors (Table 2). However, EFA with two factors proved unviable. Upon stabilizing loadings greater than 0.3, items 1b, 2b, 7b, 8b, 19b, 24 and 25 were indicated for exclusion, as the minimum criterion established for the maintenance of a factor was having at least three variables. The sum of squares of the loadings for factor 2 was 4.705 and the proportion of variance explained was 0.2614 (chi-squared = 633.21). “Preparation for death” was the dimension that retained the largest number of items (n = 7) in factor 2.

Table 2

Factor loadings, communality and percentage of variance of items in relation to factors.
Item	Factor 1	Factor 2	Communality	Percentage of variance
1b		0.22	0.048	0.95
2b		0.28	0.078	0.92
3b		0.39	0.150	0.85
4b		0.47	0.217	0.78
5b		0.38	0.141	0.86
6b		0.33	0.108	0.89
7b		0.28	0.076	0.92
8b		0.16	0.025	0.97
9b		0.62	0.380	0.62
10b		0.64	0.407	0.59
11b		0.52	0.272	0.73
12b		0.34	0.118	0.88
13b		0.57	0.325	0.68
14b		0.39	0.153	0.85
15b		0.69	0.477	0.52
16b		0.70	0.488	0.51
17b		0.47	0.224	0.78
18b		0.38	0.142	0.86
19b		0.30	0.090	0.91
20b		0.50	0.252	0.75
21b		0.55	0.303	0.70
22b		0.44	0.191	0.81
23		0.60	0.364	0.64
24	0.27		0.963	0.037
25	0.29		0.919	0.081

Confirmatory factor analysis (CFA)

The analysis of the goodness of fit to the unidimensional model resulted in the following measures: CFI of 0.7545 and TLI of 0.690 (both lower than 0.9), chi-squared = 767.33, df = 135, RMSEA of 0.121 (above the limit of 0.08), with 90%CI (0.113–0.129) and p = 5.04409e-98 (Fig. 2).

Convergent validity

Table 3 displays the matrix of Spearman’s inter-item and item-total correlations, with correlations found between items and scores of the QODD 3.2a. Most of the inter-item correlations were weak to moderate. Questions 13b, 9b and 10b were those that most presented moderate correlations with other items on the instrument: 13b and 14b/15b/16b/20b/21b; 9b and 10b/11b/15b/16b/21b; 10b and 15b/16b/23b. The other questions having moderate correlations with two other items on the instrument were 4b and 17b; 5b and 23b; 14b and 20b; 15b and 21b; 16b and 20b; 17b and 18b/20b; 20b and 23b; 22b and 23b. When correlated with the total score, moderate correlations were found between questions 3 to 6b, 11b, 12b, 14b, 17 to 20b and 22b. Questions 15b and 16b had a strong correlation and questions 9b, 10b, 13b, 15b, 16b, 21b and 23b were also strongly correlated with the total score of the instrument. Regarding the AVE, only the Family domain had a value higher than 0.5.

Reliability

The reliability analysis was based on the internal consistency of the instrument using Cronbach’s alpha and temporal stability (test-retest) using the ICC. Cronbach’s alpha was 0.8587 and the ICC was 0.9927 (95%CI: 0.9852–1.0002), revealing the adequate reliability of the instrument.

Table 4 lists the items that composed the final 18-item version of the instrument:

Table 4

Questions on final version of instrument validated for Brazilian Portuguese.
Item	Questions
1	How often was your loved one able to feed her/himself?
2	How often did your loved one appear to breathe comfortably?
3	How often did your loved one appear to feel at peace during the process of dying?
4	How often did your loved one appear to be unafraid of dying?
5	How often did your loved one spend time with his/her family or friends?
6	How often did your loved one spend time alone?
7	Was your loved one touched or hugged by his/her loved ones?
8	Were all of your loved one’s health care costs taken care of?
9	Did your loved one say goodbye to loved ones?
10	Did your loved one clear up any bad feelings with others?
11	Did your loved one have one or more visits from a religious or spiritual advisor?
12	Did your loved one have a spiritual service or ceremony before his/her death?
13	Did your loved one receive a mechanical ventilator (respirator) to breathe for him/her?
14	Did your loved one receive dialysis for his/her kidneys?
15	Did your loved one discuss his or her wishes for end-of-life care with his/her doctor - for example, resuscitation or intensive care?
16	Was any family member present at the moment of your loved one’s death?
17	In the moment before your loved one’s death, was he/she:
18	Overall, how would you rate the quality of your loved one’s dying?

The assessment of the quality of death encompasses different conceptions and is founded on circumstances involving preparation, coping, the appreciation of identities and responsibilities in the care provision scenario. These elements as well as sociocultural aspects tend to result directly in new meanings and experiences of those involved.^{(2, 4)}

The present study had a contingent of 326 subjects. This number is higher than that reported in similar studies,^(10–13) in which the number of participants ranged from 72 to 150. Thus, one may infer that Brazilian version transcended the recommendations of the literature regarding the sample equivalence of 10 individuals per item on the instrument being evaluated,⁽¹⁸⁾ reaching a quantity twofold greater than that considered necessary of the proposed validation study. However, the literature also recommends that complex instruments have a population of at least 200 subjects,⁽¹⁰⁾ which constitutes a good practice in the validation process of the QODD 3.2a in Brazilian Portuguese.

Unlike the Spanish-language version validated at a palliative care center in Chile,⁽¹⁰⁾ with a KMO test result of 0.322 and Bartlett’s test of 542.31 (p < 0.001), the version in Brazilian Portuguese confirmed the adequacy of the sample for exploratory factor analysis. Two oblique factors were identified with eigenvalues higher than 1.0, which were confirmed by Horn’s parallel analysis and similar to the results of the Persian version (KMO = 0.770 and Bartlett’s = 1642.543; p < 0.001).⁽¹²⁾

The recommendations of the literature were followed for the definition of the factors, with the maintenance of only those that contained three or more items with factor loadings greater than 0.3,⁽²⁸⁾ which resulted in a single factor with 18 items. There is consensus in the literature regarding the adoption of criteria for factor analysis. However, some differences are found in the definition of minimal factor loadings, as demonstrated in the validation of the Persian version, which considered factors with two or more items and a factor loading equal to or greater than 0.45,⁽¹²⁾ and in the Chinese version, ⁽¹³⁾ which considered factor loadings greater than 0.4. In these two versions, three and five factors were extracted, respectively. In the present study, however, if factor loadings only greater than 0.4 were considered, a considerable number of items would have been excluded and the instrument would have resulted in only eight questions. Thus, the decision was made to maintain loadings above 0.3 to achieve an instrument that addressed more issues.

Multivariate normality of the data in this study and the goodness-of-fit measures were less than adequate (CFI and TLI below 0.9 and RMSEA above the limit of 0.08, chi-squared = 633.21, df = 135, p = 1.73166e-65). In the Chilean⁽¹⁰⁾ and Persian⁽¹²⁾ versions developed at a palliative care center and an neonatal ICU, the goodness-of-fit measures of the factorial model were also below the ideal, although with better results compared to the Brazilian version. Better data are found in the Chinese version,⁽¹³⁾ with CFI, TLI and RMSEA of 0.93, 0.91 and 0.033, respectively.

To obtain better parameters in terms of the quality of the construct, the validation process of the Chilean version ⁽¹⁰⁾ also had a second CFA based on the 13-item model suggested by Downey et al.⁽⁹⁾ Thus, a shorter version with only four domains was developed. Furthermore, Pearson’s correlation coefficient indicated a weak correlation when exploring the relation between each item and the factor studied, as also found in the Chinese version of the instrument.⁽¹³⁾

With regards to reliability, internal consistency determined using Cronbach’s alpha was satisfactory. Similar data were found in the validation of other versions, with Cronbach’s alpha ranging from 0.60 to 0.88.^(10–13) These findings demonstrate that the instrument is reliable for the analysis of the construct that it proposes to measure. One should bear in mind that Cronbach’s alpha coefficients are strongly influenced by the number of items on an instrument ⁽³⁴⁾ and that, although the versions of the QODD have presented a factorial structure with a variable number of items, internal consistency remained satisfactory. For temporal stability, the ICC was highly significant for all items. Similar data were reported in other versions (ICC ranging from 0.88 to 0.97).^{(11, 12)}

The validation of the QODD 3.2a will enable analyses using a quantitative method in a setting that has mainly been investigated using qualitative approaches given the subjectivity of the experience of death. Besides being less costly and less complex than the development of a new instrument,^{(22, 23)} its validation enables exploring primary experiences, whose constructs remain under the same standpoint of analysis, but adapted to Brazilian culture, as previously done for other languages, such as Spanish, German, Chinese and Persian, with versions containing 31, 25 and 14 items.^(10–13)

As the translation and cultural adaptation of the QODD 3.2a⁽¹⁷⁾ has consisted only of the first step of a process to make it reliable and suitable for application to the Brazilian context,⁽³⁵⁾ the present study confers continuity to the psychometric validation process to certify its representativeness as a valid method for measuring the construct that it indeed proposes to measure.^{(15, 16)} The entire validation process of an instrument in a different cultural context requires a rigorous psychometric validation process, including the definition of levels of standardization for evaluation, but must excel by evidence capable of ensuring that the instrument is useful as a measurement tool.⁽²⁵⁾

The results of the present study indicate that the Brazilian Portuguese version of the Quality of Dying and Death – version 3.2a (intensive therapy) has a unidimensional structure and acceptable reliability, but did not obtain a good fit to the proposed factorial model.

Further exploratory studies with this instrument are needed with a duplicated sample, as the scale has different standard answers for the items and the participants may not answer “b” questions.

Nonetheless, the strong point is the availability of an unprecedented instrument in Brazil, the aim of which converges with current care guidelines that address death as a fundamental element that impacts on posthumous perceptions of end-of-life care, indicating points suitable for intervention through the specialization of care in intensive therapy.

Ethics approval and consent to participate: All individuals have provided informed consent before the data collection. Participating students were promised that the information provided would remain anonymous. Approval for the study was obtained from the Ethics committee of the Botucatu School of Medicine, UNESP (protocol number 2.772.325), and all methods were performed in accordance with the relevant guidelines and regulations.

Consent for publication: All of the patients were informed of the benefits and risks related to the study and provided their written informed consent for the study and for the publication of results.

Data availability Statement: The datasets generated and/or analysed during the current study are not publicly available to preserve anonymity of the respondents but are available from the corresponding author on reasonable request.

Competing interests: The authors declare that this research was conducted in the absence of any commercial or financial relationships that could be construed as potential conflicts of interest

Funding: This work was supported by Economic and Social Research Council (ESRC) (grant number ES/T008822/11) and Foundation of Support for Research of the State of São (Process number 2019/09904-8)

Author´s Contributions: Study design and the data collection tool: SM and CRB ; Data analysis: SM and CRB; Drafting and revising of the manuscript: SM, CFP, and CO; Approval of the final version: CO

Acknowledgments: The authors thank all of the subjects who participated.

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Table 3 is available in the Supplementary Files section.

No competing interests reported.

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Psychometric validation of Quality of Dying and Death in Brazilian family members

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Abstract

Figures

Introduction

Methods

Participants

Data collection

Statistical analysis

Results

Sociodemographic characterization of sample

Construct validity

Exploratory factor analysis (EFA)

Confirmatory factor analysis (CFA)

Convergent validity

Reliability

Discussion

Conclusion

Declarations

References

Table

Additional Declarations

Supplementary Files

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