What is compliance?
The word compliance, or therapeutic adherence, indicates the patient's continuity in following the therapy formulated by the HCP.
In the case of phenylketonuria, or PKU, it is necessary to undergo, for the entire lifespan, a restrictive diet, composed of low-protein food and supplemented by the intake of protein substitutes, prescribed by the metabolic center.
Who deals with compliance?
The metabolic health care professionals, pediatricians and dietitians, play a fundamental role in making the parents of the newborn PKU-child understand the importance of therapeutic adherence in order to guarantee normal psychophysical development.
Until the patient reaches independence, their family is key to ensure that they keep to the diet.
The rapid achievement of awareness and autonomous management of the diet is crucial for the PKUer that can feel more comfortable also in staying with their diet during social life.
What are the benefits of being compliant to the treatment?
Staying on diet is, to date, the only way, effective for all, to guarantee to PKUers a regular psychophysical development.
Those who do not continue the low phenylalanine diet in adulthood, undergo a serious risk of neurological and psychophysical damage. Another serious consequences is maternal PKU.
How to deal with a temporary stop in the diet?
It can happen that the patient shows a strong curiosity about food that is not suitable for their metabolism, that they give in to temptation and tastes them, or considers the idea of quitting dietary control altogether.
In all these cases – some are more worrying than others are-, do not panic and contact your metabolic center to find out if and how to intervene.
In case of difficulty, is there any support?
The first point of reference is always your metabolic center. No one better than health care professionals can support the patient and their family struggling with the diet.
Also consulting with PKU patients associations should be considered.
Even the many groups that have sprung up on Facebook social media can offer valuable insights to take into consideration.