Skip to main content

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]