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 |