Cross-cultural adaptation and content validity of the the patient decision aid “Making Choices: Feeding Options for Patients with Dementia” to Brazilian Portuguese language

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:
Dementia; Aged; Deglutition Disorders; Feeding Methods; Decision Making; Enteral Nutrition

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.

Descritores:
Demência; Idoso; Transtornos de Deglutição; Métodos de Alimentação; Tomada de Decisões; Nutrição Enteral

INTRODUCTION

A characteristic of the late stage of the elderly with dementia is Oropharyngeal Dysphagia (OD)⁽¹⁾. At this moment, there are two alternatives to be followed: under phonoaudiological assessment, feed the patient orally, slowly, with food of pasty consistency, to try and meet their basic nutritional requirements; or insert a gastrostomy tube (G-tube) and feed the patient via this feeding route. The best scientific evidence so far does not show advantages in benefiting one route or the other, therefore in this case the choice may be given to the patient or his/her caregivers, when indicated^(2-4).

A conscious choice can be made after proper professional guidance that allows caregivers to know the advantages and disadvantages of each alternative based on the best available scientific evidence, leading to a decision-making also supported by the values and preferences previously expressed by the patient and his/her family members, in the process called “Shared Decision-Making (SDM)”^(5-7). SDM may be aided by instruments called “patient decision aids” such as: texts, sound and/or images that increase the knowledge of those involved about the characteristics of the choice options. These instruments increase the possibility of making the best choice, being coherent with the values of the person involved, as well as reducing both passivity in decision-making and the individual’s decisional conflict⁽⁸⁾.

Use of instruments to support SDM in healthcare is still rare in Brazil⁽⁹⁾. One of the reasons is the lack of instruments valid for the Brazilian population. When originally produced in another country and in a foreign language, a simple translation of the instrument is not enough to ensure its validity for a different population. Cross-cultural adaptation is deemed necessary in order to guarantee equivalence of the new version in relation to the original instrument⁽¹⁰⁾. Although cross-cultural adaptation with adequate methodology maintains the validity of the original instrument, it may safely be concluded if this objective has been reached when the validity of the version is also objectively measured. And, with respect to a decision support instrument, content validity is the most assessable property⁽¹¹⁾. The hypothesis of this study is that the cross-cultural adaptation of a decision support instrument concerning the feeding route option for patients with dementia, already existing in the English language, can be performed maintaining the content validity of the instrument.

METHODS

The decision support that was the subject of cross-cultural adaptation is entitled “Making Choices: Feeding Options for Patients with Dementia” and was developed in 2011 at the University of North Carolina, in the United States of America (USA)⁽¹²⁾. This adaptation is an update and improvement of another decision support document published in 2001⁽¹³⁾, aimed at caregivers of patients living in Long-Term Care Facilities (LTCF) for the elderly with severe-stage dementia, dysphagia and who need to make a decision about the feeding route. The instrument contains information divided into 10 sections, according to the topic addressed. A clinical trial showed that this decision support was able to improve the quality of the caregivers' experience regarding the decision-making process, reducing their decision-making conflict and increasing their knowledge about treatment options⁽¹⁴⁾.

The authors of the instrument granted permission for the cross-cultural adaptation to be made in Brazil. This adaptation was carried out following the Beaton and Bombardier⁽¹⁰⁾ guidelines for cross-cultural adaptation, composed of six stages. I) Two independent translations (T1 and T2) of the original instrument into the target language were carried out by two Brazilian translators who were fluent in English, only one of whom knew the purpose of the study. II) A synthesis of the translations was done to arrive at a consensus translation (T12), achieved by consensus in a meeting between the translators and the lead author of the study. III) Two independent back-translations (BT1 and BT2) into the original language were produced by two English teachers, without formal medical training, from English-speaking countries, one American and one British. IV) A synthesis of the back-translations (BT12) was achieved by consensus in a meeting between the native English-speaking translators, the native Portuguese-speaking translators and the lead author of the study. V) Preparation of the pre-final version: all documents were analysed by a cross-cultural adaptation committee composed of two geriatric physicians with 15 years of specialized work experience, a university professor with cross-cultural adaptation experience, a Portuguese language teacher, the translators and the back-translators. In a consensus meeting, and in contact via electronic media with the author of the original instrument, the committee produced the pre-final version of the instrument in Portuguese (VPF).

The methodology used⁽¹⁵⁾ to assess content validity consisted in evaluating each of the 10 sections of the instrument (“What is dementia?”; “What options do I have?”; “What happens whether I should decide on a feeding tube?”; “What happens whether I should decide on oral feeding?”; “What else do we need to think about? “; “What are the advantages of choosing a feeding tube”; “What are the disadvantages of choosing a feeding tube”; “What are the advantages of choosing oral feeding with assistance”; “What are the disadvantages of choosing oral feeding with assistance” and “Questions to ask yourself”) by a committee of judges (experts). Thirty-five judges (experts), selected among the researchers' contacts through e-mail communication, presented the pre-final version of the instrument for evaluation. Speech-language therapists with expertise in swallowing disorders, geriatric, neurological or palliative care physicians, and nurses working in palliative care units or LTCFs were included as judges. The judges had at least ten years of graduation and a minimum of five years working in the specific area. After signing an Informed Consent Form (ICF), they answered two online questionnaires using the Google Forms instrument, in order to objectively quantify the variables’ relevance and the technical quality of each section of the instrument⁽¹⁵⁾. In the first questionnaire, they evaluated to what extent they considered that the information provided in each section of the final version was relevant for the caregiver’s decision-making. This was done using a Likert scale with four alternatives: (1) not very relevant (2) somewhat relevant (3) very relevant (4) extremely relevant. In the second questionnaire, they were asked to what extent they could agree with statements presented and elected their options on a 4-point Likert scale: (1) strongly disagree (2) disagree (3) agree (4) strongly agree. After answering each question, the judge still had a space to write, in a transparent way, about the relevance and clarity of the content and the possible need to include other items. Thus, it was verified whether the instrument obtained adequate coverage of the subject domain with the sections presented⁽¹⁵⁾.

VI) Pre-test: for the pre-test the methodology proposed by Beaton et al.⁽¹⁰⁾ was followed, as recognized by national recommendations⁽¹¹⁾. Included in this study were thirty caregivers of elderly people diagnosed with severe dementia after clinical and laboratory evaluation with a geriatric physician, who worked at a geriatric outpatient clinic of a Brazilian public service in the period from February to April 2017, who were aged 18 years old or over, who could read and write and were caregivers of elderly people who did not use an artificial feeding route (nasoenteral tube or gastrostomy tube). All caregivers were instructed about the purposes of the study, signed an ICF and completed a demographic survey questionnaire.

The caregivers read each of the 10 sections of the VPF (“What is dementia?”; “What options do I have?”; “What happens whether I should decide on a feeding tube?”; “What happens whether I should decide on oral feeding?”; “What else do we need to think about? “; “What are the advantages of choosing a feeding tube”; “What are the disadvantages of choosing a feeding tube”; “What are the advantages of choosing oral feeding with assistance”; “What are the disadvantages of choosing oral feeding with assistance” and “Questions to ask yourself”) and completed for each section the sentence “What I just read, I stated that…” on a Likert scale, with five possible answers: (1) I did not understand anything (2) I understood very little (3) I half understood (4) I understood almost everything (5) I understood everything. It was agreed that a mean score of 4 or more, equivalent to 80% of understanding of the item in the population, would be considered adequate^(16-18). At the end of each section, caregivers also answered an open question (“In these pages you have just read, is there any word or phrase that was not clear to you?”) in which they could report some difficulty in understanding the text before moving on to read the next section. Meetings were audio recorded and the researcher noted down all the contributions of the caregivers. These were analyzed by the adaptation committee which generated the final version (FV) of the cross-cultural adaptation.

Statistical analysis

In the pre-test, descriptive statistics with mean and standard deviation were used to evaluate the score of the caregivers' level of understanding. The Content Validity Index (CVI) for each section⁽¹⁹⁾ and the level of agreement between the judges' answers measured by Fleiss' kappa were used as quantitative measures to assess content validity. Judges who marked alternatives 1 or 2 as well as 3 or 4 on the Likert scales were considered as being in agreement. It was admitted that values greater than 0.8 for kappa statistics and CVI would indicate adequate validity of the item analyzed by the committee.

Ethical aspects

The study was approved by the Ethics Committee for Research with Human Beings (in Portuguese, Comitê de Ética em Pesquisa com Seres Humanos (CEPSH)) of the Federal University of Santa Catarina, under number 1,769,305 (CAAE 59945916.3.0000.0121).

RESULTS

Compared to the original instrument, some adaptations were produced for developing the VPF in Brazilian Portuguese.

The original instrument is aimed at caregivers of patients who live in nursing homes, a situation that is very common in the USA but does not comprise the majority of cases in Brazil, where the elderly with dementia are most commonly found at home or at relatives' homes. Thus, in the sentence “you are probably the person who will talk to the doctor and the health team in the nursing home”, the term “nursing home” was removed.

Another change was in the sentence “Owing to problems of eating and swallowing, the amount of food the person eats may vary each day”. The sentence “Some days it may seem that she/he has eaten too little, although it may be enough” was added at the end. For the committee this change could better guide caregivers through challenging times when food intake becomes very low.

The demographic survey of the caregivers at the pre-test stage is described in Table 1. The mean scores for understanding the sections at this stage are presented in Table 2.

Table 1
Demographic characteristics of caregivers participating in the pre-test

Variables	Number of caregivers (%)
Gender
Male	7 (23.3)
Female	23 (76.7)
Education
From 1 to 4 years	2 (6.7)
From 5 to 8 years	4 (13.3)
From 9 to 11 years	6 (20.0)
12 years or more	18 (60.0)
Religion
Catholic	17 (56.6)
Evangelical	5 (16.7)
Spiritism	2 (6.7)
Others	3 (10.0)
No religion	2 (6.7)
Not informed	1 (3.3)
Parentage
Child	18 (60.0)
Spouse	6 (20.0)
Brother/Sister	1 (3.3)
Not related	5(16.7)

Table 2
Mean score regarding the levels of understanding indicated by caregivers in the pre-test

Section	Mean ± Standard Deviation
“What is dementia”	4.8 ± 0.6
“What options do I have”	5.0 ± 0.2
“What happens whether I should decide on a feeding tube?”	4.9 ± 0.2
“What happens whether I should decide on oral feeding?”	4.8 ± 0.4
“What else do we need to think about?”	4.8 ± 0.5
“What are the advantages of choosing a feeding tube”	4.9 ± 0.4
“What are the disadvantages of choosing a feeding tube”	4.9 ± 0.2
“What are the advantages of choosing oral feeding with assistance”	4.9 ± 0.2
“What are the disadvantages of choosing oral feeding with assistance”	4.9 ± 0.2
“Questions to ask yourself”	4.9 ± 0.2

The caregivers' responses to the open questions totaled 45 points. They were analyzed by the adaptation committee and two modifications based on them were incorporated into the final version of the instrument. The phrase “the probe can be removed by pulling it out. It is designed to be removed this way” was questioned in three sessions. The information that the probe should be removed by a qualified professional was added. Another change was in the phrase “however, as the dementia worsens, the type of assistance they receive may have to be changed”, which was questioned in two sessions. The meaning of this phrase, according to the instrument’s author, is that dementia is a progressive disease and oral feeding methods may not work after a few months, when the patient may require further assistance. Based on this information, the adaptation committee has decided to rewrite the sentence as follows: “however, as dementia worsens, the type of assistance they receive may have to be adapted to meet patients with increasing difficulties”.

The committee of judges for assessing content validity was composed of 35 experts, residents of nine cities in five Brazilian states, as follows: Amazonas; Goiás; Paraná; Santa Catarina; and Rio Grande do Sul. There were 14 geriatric physicians (40.0%), seven speech-language therapists (20.0%), six nurses (17.1%), six neurologists (17.1%) and two (5.7%) palliative care specialists. All specialists had more than ten years of graduation in their areas of expertise and more than five years of performance in their specialties, dealing with people with dementia and dysphagia. Seventeen of the experts had obtained their maximum education at specialization level (48.6%), nine at master's level (25.7%) and nine at doctoral level (25.7%). Results of the content validation by the judges are presented in Table 3. All items of the instrument obtained results higher than 0.8 for CVI and kappa. The judges' evaluations on the characteristics of the instrument are presented in Table 4, and these also pointed out to satisfactory results. The FV of the decision support entitled “Making Choices: food options for patients with dementia” is presented in ^{Annex 1}.

Table 3
Judges’ assessment on the relevance of the content regarding the sections of the adapted decision support

Section	Judgment		CVI	Kappa
	Not relevant n (%)	Relevant n (%)
“What is dementia”	0 (0.)	35 (100.)	1.0	1.0
“What options do I have”	2 (5.7)	33 (94.3)	0.94	0.89
“What happens whether I should decide on a feeding tube?”	2 (5.7)	33 (94.3)	0.94	0.89
“What happens whether I should decide on oral feeding?”	3 (8.6)	32 (91.4)	0.91	0.84
“What else do we need to think about?”	2 (5.7)	33 (94.3)	0.94	0.89
“What are the advantages of choosing a feeding tube”	0 (0.)	35 (100.)	1.0	1.0
“What are the disadvantages of choosing a feeding tube”	1 (2.9)	34 (97.1)	0.97	0.94
“What are the advantages of choosing oral feeding with assistance”	1 (2.9)	34 (97.1)	0.97	0.94
“What are the disadvantages of choosing oral feeding with assistance”	0 (0.)	35 (100.)	1.0	1.0
“Questions to ask yourself”	1 (2.9)	34 (97.1)	0.97	0.94

Table 4
Judges’ assessment of general aspects of adapted decision support

Questions	Judgment		CVI	Kappa
	Disagree n (%)	Agree n (%)
Decision support is well organized	1(2.9)	34(97.1)	0.97	0.94
Information about the two choices. including their risks and benefits. has been shown in a reasonable way	2(5.7)	33(94.3)	0.94	0.89
The language used is easy to understand	0 (0.0)	35 (100.0)	1.00	1.00
The information presented is in accordance with the scientific evidence currently available	0 (0.0)	35 (100.0)	1.00	1.00
The photos and pictures regarding the decision support make it easier to comprehend	0 (0.0)	35 (100.0)	1.00	1.00
The amount of information provided is sufficient	1(2.9)	34(97.1)	0.97	0.94

DISCUSSION

This study performed a cross-cultural adaptation regarding the decision support “Making Choices: Feeding Options for Patients with Dementia”⁽¹²⁾. Obtaining semantic and idiomatic equivalences by means of simple translation is certainly not sufficient for the success of the adaptation of decision aids. There are important differences in end-of-life decisions in the USA and Brazil⁽²⁰⁾. Thus, as in other studies dealing with cross-cultural adaptation of health measurement instruments^(21,22), one of the tasks of the adaptation committee focused on making changes to ensure cultural equivalence of the instrument when appied to the Brazilian population (for instance, the fact that the adapted decision support could be used by persons caring for dementia patients in their own homes). In Brazil, unlike the USA, only a small portion of the elderly population resides and dies in LTCF^(23,24).

It is important to highlight, however, that there is still no established methodology for cross-cultural adaptation and validation of decision support instruments. There is extensive literature on cross-cultural adaptation and validation of health measurement instruments (questionnaires for research or clinical appication)⁽²⁵⁾, but not all concepts of this methodology appy to decision aids. In decision support, unlike the questionnaire, there are no scores or points generated by the response of individuals. There is no variable to measure, as decision supports are not measurement instruments. Therefore, the concept of “validity” is not appicable to them in the same way as to questionnaires. “Validity”, by definition, refers to the ability of the instrument to measure what it is actually intended to measure - and the measuring ability is not something undertaken by decision aids.

A review of the most commonly used methodologies for adaptation and validation of decision instruments was published⁽²⁶⁾ recently, and we chose to perform the entire cross-cultural adaptation process based on it. This process included a pre-test stage with the target population regarding the use of the instrument (comprising the assessment of the original instrument, its translation and adaptation to another cultural context, and the verification of the version’s acceptability and usability by the target population). Also included was an assessment of its content validity by a multiprofessional committee of experts, to ensure that our decision support is well characterized as a way of communicating specialized information to the lay public. Content validation by experts in the field is certainly appicable⁽²⁵⁾ to this type of instrument. Other adaptations of decision aids have followed a methodology similar to ours, and the content of the assessment by expert judges is considered essential for the instrument, as its general purpose will be to inform the public^(27,28).

In Brazil, the effective practice of SDM in healthcare is incipient⁽²⁹⁾. To our knowledge, there is no cross-cultural adaptation study of a decision support in Brazilian Portuguese. The term “shared decision” is present in the international literature since the early 1980's, but there is little presence of the subject in Brazilian scientific literature. This important strategy is not significantly included in the daily routine of Brazilian health professionals and those from other developing countries⁽³⁰⁾. We suppose that the barriers to SDM may be identified as our lack of maturity in matters of education and democracy. Our study tried to minimize this shortcoming, in an area where SDM is likely to be critical: end-of-life decisions, specifically the potential choice of feeding route in patients with dementia affected by OD. With respect to that, this paper presents the concept of “decision support tools” including procedures for their adaptation and evaluation of content validity for use in our population, to generate a specific instrument for use in the Brazilian population regarding the choice of feeding route in patients with advanced dementia and dysphagia. An in-depth evaluation of the properties of this instrument may be carried out in further studies and with larger samples, to assess its effect on the decision-making process of Brazilian caregivers in real practice settings.

CONCLUSION

The decision support instrument “Making Choices: Feeding Options for Patients with Dementia” was adapted to be used by the Portuguese-speaking population in Brazil, generating the instrument entitled “Fazendo escolhas: opções de alimentação para pacientes com demência”, which 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.

Annex 1 Making Choices: Feeding options for patients with dementia

ACKNOWLEDGEMENTS

To the caregivers of the elderly and the expert judges who contributed to this work, and to Professor Laura C. Hanson.

• Study conducted at Universidade Federal de Santa Catarina – UFSC - Florianópolis (SC), Brasil.

• Financial support:

  nothing to declare.

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Publication Dates

• Publication in this collection
  04 June 2021
• Date of issue
  2021

History

• Received
  19 Feb 2020
• Accepted
  17 June 2020