Expert consensus on the long-term effectiveness of medical nutrition therapy and its impact on the outcomes of adults with phenylketonuria

Description

Rocha et al. aimed to develop a set of consensus statements that shed light on the long-term effectiveness of medical nutrition therapy (MNT) and improve the understanding of the impact MNT has on health outcomes in adults with phenylketonuria (PKU).

Expert consensus led to the development of 19 statements across 3 topics. Key observations were that evidence supporting the safety of guideline-recommended target ranges in adulthood was lacking and that, whilst MNT is the primary treatment for PKU worldwide, the burden of long-term reliance on MNT leads to inadequate adherence. Additional data-limitations were noted around the long-term effectiveness of MNT and the potential detrimental health effects due to MNT.

Findings demonstrate that there is an unmet treatment need in PKU due to the limitations and burden of long-term reliance on MNT, which many patients struggle to adhere to, potentially leading to an increase in detrimental health effects.