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Effectiveness of Nutrition Education Tools used in PKU Management

1. What country is your clinic located?


Response Percent Country: Response Count

100.0%

81

answered question skipped question

81 0

2. Given your clinical experience, do you believe that the definition of dietary compliance encompasses: completing daily metabolic prescription, Phe levels within treatment range, and regular monitoring of Phe levels?
Response Percent Agree Disagree 94.7% 5.3% answered question skipped question Response Count 72 4 76 5

3. Do you believe there is a correlation between the type of nutrition education tools used in a clinical setting and long term dietary compliance?
Response Percent Yes No 86.1% 13.9% answered question skipped question Response Count 62 10 72 9

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4. Offering nutrition education to PKU patients in a clinic setting is most effective for long term dietary compliance starting at what age?
Response Percent 3-5 yrs 6-9 yrs 10-12 yrs 13-15 yrs 16-18 yrs 19-21 yrs 21+ yrs 59.4% 31.9% 7.2% 1.4% 0.0% 0.0% 0.0% answered question skipped question Response Count 41 22 5 1 0 0 0 69 12

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5. In your experience, which educational tool, in the clinical setting, is the most effective for each age group? We define group clinic as: "patients of similiar age in a facilitated clinic, learning the same activity with opportunities to have hands-on experiences (cooking, mixing formula, measuring food)".
One-onHandouts one counseling 8.3% (5) 3.3% (2) 8.3% (5) 8.3% (5) 10.0% (6) 5.0% (3) 8.3% (5) 48.3% (29) 40.0% (24) 31.7% (19) 36.7% (22) 43.3% (26) 51.7% (31) 45.0% (27)

Group Clinic

Cooking classes

Other

Response Count

3-5 yrs 6-9 yrs 10-12 yrs 13-15 yrs 16-18 yrs 19-21 yrs 21+

20.0% (12) 31.7% (19) 30.0% (18) 26.7% (16) 15.0% (9) 8.3% (5) 10.0% (6)

11.7% (7) 13.3% (8) 20.0% (12) 16.7% (10) 21.7% (13) 23.3% (14) 25.0% (15)

11.7% (7) 11.7% (7) 10.0% (6) 11.7% (7) 10.0% (6) 11.7% (7) 11.7% (7)

60 60 60 60 60 60 60

If you selected "Other", please describe what type of nutrition education tool you feel is most effective:

18

answered question skipped question

60 21

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6. In your opinion, which ONE of the following nutrition education tools has the greatest impact on long term dietary compliance?
Response Percent One-on-one counseling Handouts Cooking classes Group clinic Other (please specify) 60.0% 1.7% 8.3% 15.0% Response Count 36 1 5 9

15.0%

answered question skipped question

60 21

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7. In your opinion, what other factors are important for long term dietary compliance?
Response Percent Self-motivation Availability of formula Availability of low-protein food Confident with diet prescription Availability of insurance coverage Parental involvement and role modeling Appropriate level of diet responsibility as a child (mixing formula, weighing food, keeping diet records) Understanding health consequences associated with noncompliance Involvement of metabolic multidisciplinary team Educational level and socioeconomic status of family Other (please specify) 66.7% 40 80.0% 48 88.3% 71.7% 70.0% 46.7% 51.7% Response Count 53 43 42 28 31

90.0%

54

66.7%

40

63.3%

38

11.7%

answered question skipped question

60 21

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8. Does your clinic offer group clinics as an educational tool?


Response Percent Yes, we currently offer group clinic No, we do not offer group clinic 25.9% 74.1% Response Count 15 43

If you do not offer group clinic, please describe what other nutrition education tools you use in your clinic:

22

answered question skipped question

58 23

9. Do you believe group clinics are an effective nutrition education tool for long term dietary compliance?
Response Percent Yes No 84.5% 15.5% answered question skipped question Response Count 49 9 58 23

10. Do you believe cooking classes are an effective nutrition education tool for long term dietary compliance?
Response Percent Yes No 87.9% 12.1% answered question skipped question Response Count 51 7 58 23

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11. In your opinion, is one-on-one counseling an effective nutrition education tool for long term dietary compliance?
Response Percent Yes No 93.1% 6.9% answered question skipped question Response Count 54 4 58 23

12. Please state why you feel one-on-one counseling is not an effective nutrition education tool for long term dietary compliance.
Response Count 3 answered question skipped question 3 78

13. How would you rate the influence of parental/family involvement as a factor in long term dietary compliance?
No Moderately influences Neutral Slightly influences influence on compliance 0.0% (0) Rating Average Response Count

Greatly influences compliance

Parental/Family Involvement

89.7% (52)

10.3% (6)

0.0% (0)

0.0% (0)

1.10

answered question skipped question

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14. In your clinic, what are the 3 most prevalent barriers with regards to long term dietary compliance? Please select your top 3 choices.
Rating Average 2.27 1.81 2.07 2.36 1.75 2.40 1.89 2.27 Response Count 15 26 30 14 8 5 9 11

Taste of formula Restricted diet Inconvenience of diet Embarrassment in social activities Educational level of parents Healthy family eating habits Socio-economic status Difficulty in food preparation Lack of insurance coverage for medical formula, medication, and low-protein foods Language and cultural barriers Availability of dietary treatment Poor family cohesion

13.3% (2) 46.2% (12) 33.3% (10) 14.3% (2) 37.5% (3) 0.0% (0) 22.2% (2) 27.3% (3)

46.7% (7) 26.9% (7) 26.7% (8) 35.7% (5) 50.0% (4) 60.0% (3) 66.7% (6) 18.2% (2)

40.0% (6) 26.9% (7) 40.0% (12) 50.0% (7) 12.5% (1) 40.0% (2) 11.1% (1) 54.5% (6)

50.0% (13)

34.6% (9)

15.4% (4)

1.65

26

0.0% (0) 0.0% (0) 42.3% (11)

33.3% (1) 100.0% (1) 19.2% (5)

66.7% (2) 0.0% (0) 38.5% (10)

2.67 2.00 1.96

3 1 26 58 23

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15. Is it your opinion that nutrition education may have a positive impact on helping your patients overcome the social barriers that prevent long term dietary compliance? (ie: embarrassment in social activities, patient has learned to be comfortable saying "No thank you" and adhering to diet)
Response Percent Yes No 94.7% 5.3% answered question skipped question Response Count 54 3 57 24

16. Do you believe a computer-based nutrition education tool would increase long term dietary compliance over traditional handouts for the following age groups?
Response Count 58 57 57 58 23

Yes

No

5-18 yrs old 19-30 yrs old 31+ yrs old

94.8% (55) 86.0% (49) 54.4% (31)

5.2% (3) 14.0% (8) 45.6% (26) answered question skipped question

17. If a computer-based nutrition education tool were available, would you use it?
Response Percent Yes No 96.6% 3.4% answered question skipped question Response Count 56 2 58 23

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18. Please select all terms that apply to your definition of dietary compliance in PKU management.
Response Percent Regular blood draws Phe levels within treatment range Regular clinic visits Ability to meet energy requirements Accurate use of diet records Ability to understand diet prescription Other 100.0% 0.0% 100.0% 66.7% 100.0% Response Count 3 0 3 2 3

100.0%

33.3% Other (please specify)

answered question skipped question

3 78

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19. Why do you believe group clinic is NOT an effective nutrition education tool for long term dietary compliance?
Response Percent Facility space is not available Cost (too expensive to operate) Patients do not have an interest in attending group clinics Our clinic does not have a patient population to support group clinics Other (please specify) 55.6% 5 33.3% 11.1% Response Count 3 1

22.2%

55.6%

answered question skipped question

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20. Why do you believe cooking classes are NOT an effective nutrition education tool for long term dietary compliance?
Response Percent Facility space is not available Cost (too expensive to operate) Our patients do not have an interest in attending cooking classes Other (please specify) 28.6% 2 14.3% 0.0% Response Count 1 0

71.4%

answered question skipped question

7 74

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21. Do you believe your clinic's nutrition education tools have played a role in increased long term dietary compliance of your patients?
Response Percent Yes No 85.2% 14.8% answered question skipped question Response Count 52 9 61 20

22. Do you believe computer-based nutrition education programs would be an effective tool for long term dietary compliance?
Response Percent Yes No Other (please specify) 65.5% 6.9% Response Count 38 4

27.6%

16

answered question skipped question

58 23

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23. Why do you believe there is no correlation between the type of nutrition education tools used and long term dietary compliance?
Response Percent Poor family cohesion Failure to grasp concepts presented by nutrition education tools Socio-economic status Other (please specify) 88.9% Response Count 8

66.7%

55.6%

66.7%

answered question skipped question

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24. Why haven't your nutrition education tools played a role in increased long term dietary compliance?
Response Percent Lack of self-motivation to use tools Socio-economic status Poor relationship with metabolic clinic team Poor parental/family involvement Other (please specify) 77.8% 44.4% Response Count 7 4

22.2%

88.9%

33.3%

answered question skipped question

9 72

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