Expert Consensus on the Long-Term Effectiveness of Medical Nutrition Therapy and Its Impact on the Outcomes of Adults with Phenylketonuria
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Expert Consensus on the Long-Term Effectiveness of Medical Nutrition Therapy and Its Impact on the Outcomes of Adults with Phenylketonuria. / Rocha, Júlio César; Ahring, Kirsten K; Bausell, Heather; Bilder, Deborah A; Harding, Cary O; Inwood, Anita; Longo, Nicola; Muntau, Ania C; Pessoa, André L Santos; Rohr, Fran; Sivri, Serap; Hermida, Álvaro.
in: NUTRIENTS, Jahrgang 15, Nr. 18, 3940, 11.09.2023.Publikationen: SCORING: Beitrag in Fachzeitschrift/Zeitung › SCORING: Zeitschriftenaufsatz › Forschung › Begutachtung
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TY - JOUR
T1 - Expert Consensus on the Long-Term Effectiveness of Medical Nutrition Therapy and Its Impact on the Outcomes of Adults with Phenylketonuria
AU - Rocha, Júlio César
AU - Ahring, Kirsten K
AU - Bausell, Heather
AU - Bilder, Deborah A
AU - Harding, Cary O
AU - Inwood, Anita
AU - Longo, Nicola
AU - Muntau, Ania C
AU - Pessoa, André L Santos
AU - Rohr, Fran
AU - Sivri, Serap
AU - Hermida, Álvaro
PY - 2023/9/11
Y1 - 2023/9/11
N2 - Many adults with phenylketonuria (PKU) rely on medical nutrition therapy (MNT; low phenylalanine (Phe) diet with protein substitutes/medical foods) to maintain blood Phe concentrations within recommended ranges and prevent PKU-associated comorbidities. Despite disease detection through newborn screening and introduction of MNT as early as birth, adherence to MNT often deteriorates from childhood onwards, complicating the assessment of its effectiveness in the long term. Via a modified Delphi process, consensus (≥70% agreement) was sought on 19 statements among an international, multidisciplinary 13-member expert panel. After three iterative voting rounds, the panel achieved consensus on 17 statements related to the limitations of the long-term effectiveness of MNT (7), the burden of long-term reliance on MNT (4), and its potential long-term detrimental health effects (6). According to the expert panel, the effectiveness of MNT is limited in the long term, is associated with a high treatment burden, and demonstrates that adults with PKU are often unable to achieve metabolic control through dietary management alone, creating an unmet need in the adult PKU population.
AB - Many adults with phenylketonuria (PKU) rely on medical nutrition therapy (MNT; low phenylalanine (Phe) diet with protein substitutes/medical foods) to maintain blood Phe concentrations within recommended ranges and prevent PKU-associated comorbidities. Despite disease detection through newborn screening and introduction of MNT as early as birth, adherence to MNT often deteriorates from childhood onwards, complicating the assessment of its effectiveness in the long term. Via a modified Delphi process, consensus (≥70% agreement) was sought on 19 statements among an international, multidisciplinary 13-member expert panel. After three iterative voting rounds, the panel achieved consensus on 17 statements related to the limitations of the long-term effectiveness of MNT (7), the burden of long-term reliance on MNT (4), and its potential long-term detrimental health effects (6). According to the expert panel, the effectiveness of MNT is limited in the long term, is associated with a high treatment burden, and demonstrates that adults with PKU are often unable to achieve metabolic control through dietary management alone, creating an unmet need in the adult PKU population.
KW - Infant, Newborn
KW - Adult
KW - Humans
KW - Child
KW - Consensus
KW - Nutrition Therapy
KW - Phenylketonurias/therapy
KW - Neonatal Screening
U2 - 10.3390/nu15183940
DO - 10.3390/nu15183940
M3 - SCORING: Journal article
C2 - 37764724
VL - 15
JO - NUTRIENTS
JF - NUTRIENTS
SN - 2072-6643
IS - 18
M1 - 3940
ER -