Table 7 Facilities the patients want to have
From: Phenylketonuria from the perspectives of patients in Türkiye
Pediatric | Adolescent | Adult | ||||
|---|---|---|---|---|---|---|
N | n (%) | N | n (%) | N | n (%) | |
Activation of more metabolism centers for ease of access | 66 | 60 (90.9) | 44 | 40 (90.9) | 72 | 52 (72.2) |
More options for low-protein foods | 66 | 59 (89.4) | 44 | 41 (93.2) | 72 | 60 (83.3) |
Programs about PKU and newborn screening on television/TV series | 66 | 59 (89.4) | 44 | 41 (93.2) | 72 | 62 (86.1) |
Raising awareness about phenylketonuria in the society | 66 | 58 (87.9) | 44 | 41 (93.2) | 72 | 56 (77.8) |
Opportunity of sending blood samples to metabolism center for phenylalanine measurement | 66 | 58 (87.9) | 44 | 36 (81.8) | 72 | 54 (75.0) |
Availability of home devices for phenylalanine measurement | 66 | 57 (86.4) | 44 | 40 (90.9) | 72 | 56 (77.8) |
Availability of more options for drug therapy | 66 | 57 (86.4) | 44 | 39 (88.6) | 72 | 51 (70.8) |
Opportunity of control/follow-up without visiting a hospital (control via phone-call and internet /follow-up system, blood collection at home, etc.) | 66 | 55 (83.3) | 44 | 40 (90.9) | 72 | 57 (79.2) |
Awareness activities in every province | 66 | 55 (83.3) | 44 | 39 (88.6) | 72 | 53 (73.6) |
Providing the patient families with educational opportunity on PKU management | 66 | 51 (77.3) | 44 | 33 (75.0) | 72 | 46 (63.9) |
More active patient society | 66 | 51 (77.3) | 44 | 34 (77.3) | 72 | 45 (62.5) |
Other | 66 | 2 (3.0) | 44 | 2 (4.5) | 72 | 4 (5.6) |