Adaptation and Validation of a Questionnaire to Evaluate Knowledge of the Low Phe Diet in PKU

Ramos-Álvarez, Rodolfo; Kapp, Maili; Rodríguez-Ruiz, María Mercedes; Fausor, Rocío; Bueno-Delgado, María Amor; Ahring, Kirsten; Waisbren, Susan E.

doi:10.3390/nu13082719

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Adaptation and Validation of a Questionnaire to Evaluate Knowledge of the Low Phe Diet in PKU

Rodolfo Ramos-Álvarez

^1,*,

Maili Kapp

²,

María Mercedes Rodríguez-Ruiz

³,

Rocío Fausor

⁴

María Amor Bueno-Delgado

⁵,

Kirsten Ahring

⁶ and

Susan E. Waisbren

^7,*

Department of Social Psychology, Melilla Campus, Granada University, 52005 Melilla, Spain

Teaching Innovation Project (Code: 14–82), Melilla Campus, Granada University, 52005 Melilla, Spain

Osakidetza, Basque Health Service, 010006 Vitoria, Spain

⁴

Department of Personality, Assessment and Clinical Psychology, Complutense University of Madrid, 28223 Madrid, Spain

⁵

Pediatrics Service, Virgen del Rocío University Hospital, 41013 Sevilla, Spain

⁶

Center for PKU, Copenhagen University Hospital, 2600 Copenhagen, Denmark

⁷

Genetics and Metabolism Programs, Boston Children’s Hospital, Harvard Medical School, Harvard University, Boston, MA 02115, USA

Authors to whom correspondence should be addressed.

Nutrients 2021, 13(8), 2719; https://doi.org/10.3390/nu13082719

Received: 15 June 2021 / Revised: 21 July 2021 / Accepted: 30 July 2021 / Published: 7 August 2021

(This article belongs to the Section Nutrition Methodology & Assessment)

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Abstract

Phenylketonuria (PKU) is an autosomal recessive disorder of phenylalanine (Phe) metabolism, causing a build-up of Phe in the body. Treatment consists of a Phe-restricted diet for life and regular determination of blood Phe levels to monitor the intake of Phe. Despite the fact that diet is the cornerstone of treatment, there are no studies examining common knowledge about food items and whether they are allowed as part of the PKU diet. Improving parents’ and patients’ knowledge and competence about the diet enables them to make appropriate food choices. This study validates a food-knowledge questionnaire first developed in Spanish and modified for English speaking populations. The questionnaire potentially helps parents to prepare appropriate meals and healthcare providers to create individualized educational programs about PKU for children and adolescents with this disorder. View Full-Text

Keywords: phenylketonuria; diet knowledge; PKU; validation and adaptation of questionnaire

This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited

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MDPI and ACS Style

Ramos-Álvarez, R.; Kapp, M.; Rodríguez-Ruiz, M.M.; Fausor, R.; Bueno-Delgado, M.A.; Ahring, K.; Waisbren, S.E. Adaptation and Validation of a Questionnaire to Evaluate Knowledge of the Low Phe Diet in PKU. Nutrients 2021, 13, 2719. https://doi.org/10.3390/nu13082719

AMA Style

Ramos-Álvarez R, Kapp M, Rodríguez-Ruiz MM, Fausor R, Bueno-Delgado MA, Ahring K, Waisbren SE. Adaptation and Validation of a Questionnaire to Evaluate Knowledge of the Low Phe Diet in PKU. Nutrients. 2021; 13(8):2719. https://doi.org/10.3390/nu13082719

Chicago/Turabian Style

Ramos-Álvarez, Rodolfo, Maili Kapp, María M. Rodríguez-Ruiz, Rocío Fausor, María A. Bueno-Delgado, Kirsten Ahring, and Susan E. Waisbren. 2021. "Adaptation and Validation of a Questionnaire to Evaluate Knowledge of the Low Phe Diet in PKU" Nutrients 13, no. 8: 2719. https://doi.org/10.3390/nu13082719

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Adaptation and Validation of a Questionnaire to Evaluate Knowledge of the Low Phe Diet in PKU

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