Table 2 The five dimensions of adherence and topics related to PKU treatment according to literature
From: Development of an inventory to assess perceived barriers related to PKU treatment
| WHO Adherence Dimensions | Topics (reference) |
|---|---|
| Social/Economic-related factors | Poor social or family support; family skills and dynamics [15, 40, 44] |
| Health care team and system-related factors | Poor access to the health system [15] |
| Failure in receiving medication from public sources [12] | |
| Feeling of detachment in relation to the medical staff [42] | |
| Condition-related factors | Lack of perceived disease symptoms [15, 40] |
| Dealing with diagnosis as a potential risk and not as an established disease [37, 38] | |
| Therapy-related factors | Time constraints to prepare meals [15, 35, 41] |
| Difficult in preparing adequate, varied and nutritious meals [15, 34] | |
| Difficulties about what to order from the menu when eating out [15, 39] | |
| Low palatability of medical food [14, 36, 39, 40] | |
| High level of dietary restrictions [12] | |
| Patient-related factors | Lack of ability to cope with food temptation [36, 40, 41] |
| Fear of being treated differently by others, fear of stigma [15, 36, 38, 40] | |
| Feeling ashamed to talk about diagnosis with others [41] | |
| Restriction on social life [35, 36] | |
| Poor knowledge about the disease [15, 39] | |
| Poor knowledge about the treatment [15] | |
| Lack of motivation to follow the treatment [15] | |
| Denial of condition [15] | |
| Lack of conviction that poor compliance will have adverse effects [15] |