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Table 4 Frequency of responses to perceived barrier to Phenylketonuria treatment by groups of adolescents, adult patients and caregivers of patients (6 to 17 y.o)

From: Development of an inventory to assess perceived barriers related to PKU treatment

Phenylketonuria Perceived Barrier to Treatment Inventory
Patient version
Phenylketonuria Perceived Barrier to Treatment Inventory
Caregiver version
(f) % agreement to item. Patients 13 to 17 years old (n = 6)(f) % agreement to item. Patients 18 years of age or older (n = 12)(f) % agreement to item.
Caregivers of patients 6 to 17 y.o. (n = 11)
1. I am afraid that people will treat me differently or reject me if they know that I have the disease.1. I am afraid that people will treat my child differently or reject him/her if they know that he/she has the disease.(0) 0(6) 50(2) 18.2
2. Sometimes I hide from people that I have the disease.2. Sometimes I hide from people that my child has PKU.(0) 0(5) 41.7(1) 9.1
3. Sometimes I feel ashamed to tell people I have the disease.3. Sometimes I feel ashamed to tell people my kid has PKU.(0) 0(2) 16.7(0) 0
4. Although I feel like going, I don’t go to some parties or family events because I know that there will be food that I cannot eat.4. Although we want to go to a party or family event, we don’t go because we know that there will be food that he/she cannot eat.(0) 0(5) 41.7(3) 27.3
5. I have questions about what the disease is, what causes it, how it can harm me.5. I have questions about what the disease is, what causes it, how it can harm him/her.(0) 0(5) 41.7(1) 9.1
6. I do not understand what can happen if I do not get the treatment.6. I do not understand what can happen if my child kid doesn’t follow the treatment.(0) 0(3) 25(2) 18.2
7. I have questions about what I can eat, which food is forbidden, which one is allowed and how to control the diet.7. I have questions about what my child can eat, which food is forbidden, which one is allowed and how to control the diet.(0) 0(3) 25(2) 18.2
8. I often have no desire to follow the diet.8. I frequently realize that he/she doesn’t want to follow the diet.(3) 50(7) 58.3(3) 27.3
10. I believe that the disease can not harm my health.10. I believe that the disease can not harm his/her health.(1) 16.7(2) 16.7(1) 9.1
12. I feel that I do not have people to count on to help me follow the treatment.12. I feel that I don’t have people to count on to help me with my child’s treatment.(0) 0(2) 16.7(1) 9.1
13. People in my family say different things about the treatment and I do not know what to do.13. Sometimes I realize we say different things about the treatment to him/her and we don’t know what to do.(0) 0(3) 25(1) 9.1
14. I frequently have no time to prepare my meals.14. I frequently have no time to prepare his/her meals.(1) 16.7(3) 25(1) 9.1
15. Planning and preparing meals take a lot of my time on a daily basis and so I cannot fully follow the diet.15. Planning and preparing meals takes a lot of my time on a daily basis and so I cannot make my child fully follow the diet.(1) 16.7(5) 41.7(1) 9.1
16. I get a bit confused when it comes to deciding what to cook, what ingredients I can use.16. I get a little bit confused when it comes to deciding what to cook, what ingredients I can use.(1) 16.7(4) 33.3(2) 18.2
17. I get a little confused when I go to a restaurant. I do not know what I can order.17. I get a little confused when we go to a restaurant. I do not know what we can order.(1) 16.7(4) 33.3(1) 9.1
18. Sometimes I cannot resist and I eat foods I know are forbidden.18. Sometimes I cannot resist and allow him/her to eat foods I know are not allowed.(2) 33.3(8) 66.7(3) 27.3
19. It would be easier to take the formula if it had a better taste.19. It would be easier to make him/her ingest the formula if it had a better taste.(3) 50.0(11) 91.7(8) 72.7
20. I think the diet is very strict. If I could eat a broader range of food, it would be easier.20. I think the diet is very strict. If he/she could eat a broader range of food, it would be easier.(0) 0(11) 91.7(7) 63.6
21. I do not think I have a disease. I just need to take care of my meals.21. I do not think my kid has a disease. He/she just needs to take care of what he/she eats.(3) 50.0(7) 58.3(4) 36.4
22. I do not feel anything when I don’t follow the diet and that makes me not worry about the disease.22. I can’t see any difference in my child when he/she doesn’t follow the diet and that makes me not to worry about the disease.(1) 16.7(5) 41.7(2) 18.2
23. I notice that the medical staff treats me differently, as if I might not be able to follow the treatment.23. I notice that the medical staff treats us differently, as if my child and I might not be able to follow the treatment.(0) 0(2) 16.7(0) 0
24. I struggle to follow the treatment, but I feel that the medical team does not believe it.24. We struggle to follow the treatment, but I feel that the medical team does not believe us.(1) 16.7(2) 16.7(0) 0
25. I feel physicians do not believe what I say and think I do not follow what they instruct me to do.25. I feel physicians do not believe what we say and they think we do not follow what they instruct us to do.(1) 16.7(2) 16.7(0) 0
26. The distance from my house to the hospital makes it more difficult to attend the medical appointments.26. The distance from our house to the hospital makes it more difficult to attend the medical appointments.(4) 66.7(2) 16.7(4) 36.4
27. There are months when the formula is not delivered.27. There are months when the formula is not delivered.(1) 16.7(5) 41.7(5) 45.5
  1. Notes. The items were translated from the Brazilian Portuguese to English to the present paper. Following the guidelines from the International Test Commission, researchers interested in using the inventory should contact the authors to obtain the complete version of the instrument, scoring instructions and proper authorization for use
  2. Items mentioned by ≥50% of participants are printed in bold font