Common to PKU-QOL all four versions (Children, Adolescents, Adults and Parents) Or PKU-QOL three versions: either Adolescents, Adults and Parents or Children, Adolescents, Adults |
Use of “PKU” in title, instructions, name of domain, and items |
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Respondents were confused during the interviews by the use of PKU in the Brazilian version, as for them PKU refers to the name of the supplement, i.e., PKU COMIDA, and not to the disease, i.e. phenylketonuria. |
The solution was found by the dieticians and the sponsor who suggested replacing PKU by: fenilcetonúria (fenil), in the title of each version, in the name of the concerned (i.e., Diet and Supplement, Daily life, and Feelings in general), and in the instructions. fenil, in the items. |
Main Instructions |
Children: By supplement or amino acid mixture, we mean the medicine powder or drink that you have to take every day. Adolescents: By supplement or amino acid mixture, we mean the product or liquid prescribed by your doctor. Adults: By supplement or amino acid mixture, we mean the product or liquid (for example milk, powder) prescribed by your doctor. Parents: By supplement or amino acid mixture, we mean the product or liquid (for example milk, powder) prescribed to your child by their doctor. |
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In Brazil the supplement is not a drink or liquid, but a powder. In addition, the dieticians suggested using the common name used in Brazil for supplement or amino acid mixture. The syntax of the literal translation was an issue for the children, adolescents and adults respondents. For instance, two children had also difficulties with the use of “by” and “nos referimos” for “we mean”, which were too sophisticated for their age. |
The word “bebida” or “liquido” was deleted from the initial translation. The literal translation of “supplement or amino acid mixture” was replaced by the correct medical term, i.e., "fórmula metabólica" (BT**: metabolic formula). The sentence was simplified by using “Fórmula metabólica” as the subject and by deleting any reference to “by” and “we mean.” For instance, for the children version: Fórmula metabólica é o pó que você tem que tomar todos os dias (BT**: Metabolic formula is the powder you have to take every day). |
Please take all the time you need. |
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This sentence was not problematic. However, the dieticians insisted on adding a clarification about the necessity to give only one answer for each question. |
“You can only mark "X" per question” (Você só pode assinalar um "X" por pergunta) was added in all versions. |
Instructions for Domains |
For each sentence, please tick the box that best applied to you. (used in Adolescents, Adults and Parent versions)
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Translators and dieticians argued about the translation of “box.” At first, it was translated by the diminutive “quadradinho” which was judged too childish by the dieticians who proposed “alternativa.” This option was not accepted and it was decided to use “quadrado.” |
“Tick the box” was translated by “marque o quadrado” (BT**: mark the box). This was applied for repeated instructions using the “tick the box” terms throughout the questionnaire. |
Domain “YOUR HEALTH” |
Children - Item 10. In the past 7 days, I needed longer to think about things than my friends at school Adolescents, Adults - Item 6a. In the past 7 days, I needed longer to think about things (for example, schoolwork) than friends my age Parent - Item 6a. In the past 7 days, my child needed longer to think about things than other children their age |
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Two children respondents had difficulties in understanding “mais tempo” (longer). Two children and two adolescent respondents had difficulties in understanding the literal translation of “think about things”, i.e., “pensar sobre coisas.” Same issue with two adult respondents who either thought it was too vague, or too strange. Another respondent suggested using “racionar” (to reason), which was found more acceptable by all respondents of this group. |
Translators decided to replace “pensar sobre coisas” which was found too vague by “racionar (to reason), following the suggestion of the adult respondents. The parent version was harmonized accordingly. |
Domain “YOUR PKU DIET AND SUPPLEMENTS” |
low protein food (used in several items in all versions)
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“Low protein food” was an issue. Dieticians indicated that “low protein” (baixa proteina) is commonly named “baixo teor de fenil.” The problem was that this solution would have led to use “fenil” with 2 different meanings (i.e., PKU and protein). |
Translators chose to use a periphrasis, i.e., “food with low level of protein for phenylketonuria” (comida de baixo teor de proteína para fenil). |
estimate protein (exchanges) (used in Adolescents, Adults and Parents versions)italic> |
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For the sake of accuracy, the initial translation of protein (proteína) was challenged by the dieticians. |
“Proteina” was replaced by “fenilalanina” (BT**: phenylalanine). |
Domain “YOUR DAILY LIFE WITH PKU” |
Instruction Children - Following are some things that some children may experience when living with PKU. Adolescents, Adults - Following are some things that people may experience when living with PKU. Parents - Following are some things that parents of children with PKU may experience when living with PKU. |
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During the interviews, two children had difficulties with the translation of “children may experience when living with PKU” (as crianças com PKU podem viver). They could not catch the abstraction related to “podem viver.” This was not an issue for the adolescents, adults and parents. |
The translation was simplified as follows: coisas que podem acontecer com crianças com fenilcetonúria (fenil). The choice of “acontecer” (to happen) was found more colloquial and easier to understand in this context. “Acontecer” was applied to the three other versions (Adolescents, Adults and Parents) in an effort of harmonization. |
Domain “YOUR FEELINGS IN GENERAL ABOUT PKU” |
Children - Item 32. Visiting my doctor for PKU bothers me Adolescents - Item 48. Visiting my doctor/dietician for PKU bothers me Adults - Item 53. Visiting my doctor/dietician for PKU bothers me Parents - Item 40. Visiting my child's doctor/dietician for PKU bothers me |
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Usually in Brazil, children are followed by dieticians. Dieticians suggested replacing "my doctor" and “my doctor/dietician” by "medical visits." |
Following the dieticians’ advice, translators decided to make the translation less exclusive and only refer to visits, hence “Ir às consultas por causa da fenil” (BT**: Going to medical visits because of PKU”). For the parents’ version, the syntax was slightly modified by moving the genitive case from doctor to PKU: i.e., Ir às consultas por causa da fenil do meu filho/da minha filha me aborrece (BT**: “Going to medical visits because of my son's/daughter's phenylketonuria annoys me”). |
Children, Adolescents, Adults - Having PKU makes me angry Parents - PKU makes me angry |
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One child respondent had difficulty in understanding the concept of anger in this context. Adult respondents suggested changing “com raiva” by “revoltado.” |
As “angry” implies feeling of unfairness because of having PKU, i.e., the patients wonder why they have PKU and not others, the suggested change, i.e., “revoltado”, was implemented in all versions. |
It is hard for me (used in several items in Children, Adolescents and Adults versions) |
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The literal translation of “It is hard for me” (É difícil para mim) sounded too awkward for the translators. |
Translator decided to use “I find it difficult” (Eu acho difícil). |
Specific to PKU-QOL Child version |
Main Instructions |
Put an “X” in the circle in order to tell us how things have been for you. |
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Translators suggested replacing “how things have been for you” (como as coisas tem sido com você) by “how you have been feeling” (como você tem se sentido) to make the sentence easier to understand. |
The suggestion was accepted by the local consultant as being compliant with the list of concepts. |
Example: During my holidays, I sleep more than when I go to school |
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Two respondents had difficulties understanding the concept. |
"When I go to school" (quando vou à escola) was replaced by “during the classes” (durante as aulas). |
Domain “YOUR DAILY LIFE WITH PKU” |
Item 28. In the past 7 days, it was hard to do everything I needed to do for my PKU |
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One respondent was unable to understand the item. The team thought it was a conceptual issue as, most of the times, parents are the one measuring, calling the dietician, or preparing the food, etc. |
No change to the translation. |
Domain “YOUR FEELINGS IN GENERAL ABOUT PKU” |
Instructions: Following are some things that some children may feel about their PKU. |
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Translators thought that the direct translation of “feel about” was not adapted and would be difficult to understand. |
Translators suggested reversing the order of words and focus on the verb “to feel.” The following solution was chosen: “As frases a seguir são sobre algumas coisas que crianças com fenilcetonúria (fenil) podem sentir.” (BT**: The following sentences are about some things that children with phenylketonuria (phenyl) may feel.) |
Item 31. I am worried that my levels are high |
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For idiomatic reasons, dieticians asked that phenylalanine be added to levels to qualify them. |
The item was translated as follows: “Eu fico preocupado(a) que meus níveis de fenilalanina estejam altos” (BT**: I get worried that my levels of phenylalanine are high). |
Item 39. I feel bad about myself after eating or drinking something I am not allowed Item 40. I feel bad about myself if I miss taking a supplement |
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The issues were twofold: Translation of “I feel bad” and of “I am not allowed.” At first “bad” was translated by “culpado” (guilty). This was well understood by patients. However, teens suggested that the intitial translation of “bad” by “culpado(a)” was not relevant and proposed “arrependido(a)” (regretful). For idiomatic reasons, the dieticians suggested replacing “não é permitida.” (is not allowed) by “não posso” (I can’t) |
“Arrependido(a)” was used to translate “bad” in the children and teen versions. “Não posso” (I can’t) was kept in the final children version. |
Specific to PKU-QOL Adolescent version |
Main Instructions |
The information in this questionnaire will remain strictly confidential and anonymous. |
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One respondent found the word "confidenciais" difficult. “Anônimas” was found either not clear or difficult to understand by two other respondents. |
No change. |
Domain “YOUR HEALTH” |
Item 4b. If you felt this, do you think it was related to PKU? Item 9b. If you had this, do you think it was related to PKU? |
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The literal translation “Se você sentiu isso/ Se você teve isso, você acha que isso estava relacionado…” was found poor because of the repetition of “isso” (this). |
Translators decided to repeat the construction of: - Item 4a, i.e., I was tired during the day. The final version was as follows: Se você ficou cansado(a) durante o dia, você acha que isso estava relacionado com…” (BT**: If you were tired during the day, do you think it was related to…). - Item 9a, i.e., I had mood swings. The final version was as follows: Se você teve mudanças de humor, você acha que isso estava relacionado com a fenil? (BT**: If you had mood swings, do you think this was related to…? |
Domain “YOUR PKU DIET AND SUPPLEMENTS” |
Item 22. In the past 7 days, I was embarrassed about eating with other kids, because of my PKU Item 29. In the past 7 days, I was embarrassed about taking my PKU supplements in front of other kids |
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Translators challenged the original word “kids” as they argued that adolescents might be more appropriate given the age-range (12-17 years) of the questionnaire. |
The word “adolescentes” (BT**: adolescents) was used to replace “crianças” (BT**: kids) in the final version of both items. |
Item 33. In the past 7 days, I snuck something to eat or drink that I was not supposed to have |
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The verb “to sneak” is very idiomatic in English. It was not possible to find an equivalent in the translators. |
Translators assumed that the concept of taking in a furtive or artful manner so as not to be seen by their parents could be rendered by “escondido(a)” (BT**: hidden). Therefore, the item was translated as follows: “Nos últimos 7 dias, eu comi ou bebi escondido(a) alguma coisa que eu não deveria.” |
Domain “YOUR DAILY LIFE WITH PKU” |
Item 42. In the past 7 days, it was hard to do everything I needed to do for my PKU |
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One respondent was unable to understand the item, and another one found it irrelevant. The team thought it was a conceptual issue as, most of the times, parents are the one measuring, calling the dietician, or preparing the food, etc. (Same issue as for the children version). |
No change to the translation. |
Domain “YOUR FEELINGS IN GENERAL ABOUT PKU” |
Item 47. I am worried that my Phe/protein levels are high |
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Dieticians suggested changing Phe/protein by “Phenylalanine levels” (níveis de fenilalanina) as it is the usual way of talking about protein levels. |
The item was translated as follows: Eu fico preocupado(a) que meus níveis de fenilalanina estejam altos (BT**: I get worried that my levels of phenylalanine are high). |
Item 57. I feel guilty after eating or drinking something I am not supposed to Item 58. I feel guilty if I miss taking a supplement |
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Teens suggested that the initial translation of “bad” by “culpado(a)” was not relevant and proposed “arrependido(a)” (regretful). |
The suggestion was accepted and implemented in the Adolescents and Children version. |
Specific to PKU-QOL Adult version |
Domain “YOUR FEELINGS IN GENERAL ABOUT PKU” |
Item 64. I feel guilty if I miss taking a supplement Item 65. I feel guilty after eating or drinking something I am not supposed to |
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The translation of “guilty” was not an issue in the first round of translation. However, following the adolescents’ interviews, it was decided to switch to “arrependido(a)” (regretful). |
The word “arrependido(a)” was implemented in the Adult version. |
Specific to PKU-QOL Parent version |
Instructions and items using “your child” |
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Translators suggested using “seu filho/sua filha” (you son/you daughter) as being more idiomatic and consistent when referring to children and adolescent as child is used only for very young people. |
Change accepted and implemented. |
Domain “YOUR CHILD’S PKU DIET AND SUPPLEMENTS” |
Item 14. In the past 7 days, it was hard to make sure that my child got enough calories |
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The dieticians asked to add “energia” (energy) after calories, as Brazilian parents commonly use this word. |
The following change was implemented: calorias/energia. |