{"id":670,"date":"2023-01-12T04:55:15","date_gmt":"2023-01-12T04:55:15","guid":{"rendered":"https:\/\/pkudsehcp-dev-001.azurewebsites.net\/en-us\/phenylketonuria\/?page_id=670"},"modified":"2024-06-19T13:35:55","modified_gmt":"2024-06-19T13:35:55","slug":"goals-of-management","status":"publish","type":"page","link":"https:\/\/hcp.biomarin.com\/en-us\/pku\/talking-to-your-patients\/goals-of-management\/","title":{"rendered":"Goals of Management"},"content":{"rendered":"<div id=\"acf-block-63f65a277c913\" class=\"hero hero-no-overlay pull-bottom\">\n            <div class=\"hero-background-image hero-background-image-desktop\" style=\"background-image: url(https:\/\/hcp.biomarin.com\/en-us\/pku\/wp-content\/uploads\/sites\/2\/2023\/01\/PKU_Tree_DSE_Website_Interior_2022_v1_RGB_FIN.jpg?v=0.85);\"><\/div>\n\t    <div class=\"hero-background-image hero-background-image-mobile\" style=\"background-image: url(https:\/\/hcp.biomarin.com\/en-us\/pku\/wp-content\/uploads\/sites\/2\/2023\/03\/hero-815x800.jpg);\"><\/div>\n    \t<div class=\"overlay\"><\/div>\n\t<div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t\t<div class=\"hero-content\">\n\t\t\t    \t\t\t        <ul class=\"breadcrumb\">\n\t\t\t            \t\t\t                                                                        <li><a href=\"https:\/\/hcp.biomarin.com\/en-us\/pku\/talking-to-your-patients\/\">Managing PKU<\/a><\/li>\n                            \t\t\t                                                                        <li>Goals of Management<\/li>\n                            \t\t\t            \t\t\t        <\/ul>\n\t\t\t    \t\t\t\t\t\t\t\t\t\t\t\t    <h1>Lowering Phe levels<br \/>\nis key to care<sup>1<\/sup>\n<\/h1>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n\n<div id=\"Managing-PKU\" class=\"block split-content bg-band bg-band-white block-tight-top block-zero-bottom\" data-muted-autoplay=\"false\">\n\t<div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t                                                                <div class=\"content-block\">\n                                                                                                <h2>Managing PKU<\/h2>\n<p>Considerable knowledge has been gained regarding the improvement of neurological and neuropsychosocial symptoms associated with reduction of phenylalanine (Phe).<sup>2,3<\/sup><\/p>\n<ul>\n<li>Elevated Phe correlates with neuropsychological symptom severity, which generally improves with Phe reductions<sup>2<\/sup><\/li>\n<li>Emerging clinical evidence suggests that additional bene\ufb01ts may be attained when Phe is below recommended levels<sup>4,5<\/sup><\/li>\n<\/ul>\n                                                                                    <\/div>\n                    \n                                            <div class=\"content-block\">\n                                                                                                                                                                                                                                                                                    \n                                                                                                                \n                                                                                                                \n                                    \n                                    <figure>\n                                        <div class=\"image image-responsive image-rounded\">\n                                                                                            <div class=\"image-desktop\">\n                                                    <img decoding=\"async\" class=\"\" src=\"https:\/\/hcp.biomarin.com\/en-us\/pku\/wp-content\/uploads\/sites\/2\/2024\/02\/4.2_Low-Phe-Icon-b.svg\" alt=\"\" \/>                                                <\/div>\n                                                <div class=\"image-mobile\">\n                                                    <img decoding=\"async\" class=\"\" src=\"https:\/\/hcp.biomarin.com\/en-us\/pku\/wp-content\/uploads\/sites\/2\/2023\/01\/phe_icon_-e1679409146117.png?v=0.85\" alt=\"Low Phe icon\" \/>                                                <\/div>\n                                                                                    <\/div>\n                                                                            <\/figure>\n                                                                                    <\/div>\n                                                \t\t<\/div>\n\t<\/div>\n<\/div>\n\n<div id=\"Guidlines\" class=\"block split-content bg-band bg-band-alternative block-zero-top block-zero-bottom\" data-muted-autoplay=\"false\">\n\t<div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t                                                                <div class=\"content-block\">\n                                                                                                <h2>Guidelines recommend lifetime maintenance of Phe concentrations \u2264360 \u00b5mol\/L<sup>2<\/sup><\/h2>\n                                                                                                                                <ul>\n<li>Treatment should be started as early as possible and maintained for life<\/li>\n<li>Any combination of therapies that helps keep blood Phe levels in the recommended range is appropriate<\/li>\n<\/ul>\n<p class=\"p1\">The American College of Medical Genetics and Genomics (ACMG) released guidelines in 2014 on the diagnosis and management of phenylketonuria (PKU) &#8211;\u00a0<br \/>\nView the complete ACMG Guidelines <a href=\"https:\/\/hcp.biomarin.com\/en-us\/pku\/wp-content\/uploads\/sites\/2\/2023\/11\/ACMG-Guidelines-Summary-Flyer.pdf?v=0.53\" target=\"_blank\" rel=\"noopener\">here<\/a>.<\/p>\n                                                                                    <\/div>\n                    \n                                            <div class=\"content-block\">\n                                                                                                                                                                                                                                                                                    \n                                                                                                                \n                                                                                                                \n                                    \n                                    <figure>\n                                        <div class=\"image image-responsive image-rounded\">\n                                                                                            <div class=\"image-desktop\">\n                                                    <img decoding=\"async\" class=\"\" src=\"https:\/\/hcp.biomarin.com\/en-us\/pku\/wp-content\/uploads\/sites\/2\/2024\/02\/4.2_Phe-Levels-Icon.svg\" alt=\"\" \/>                                                <\/div>\n                                                <div class=\"image-mobile\">\n                                                    <img decoding=\"async\" class=\"\" src=\"https:\/\/hcp.biomarin.com\/en-us\/pku\/wp-content\/uploads\/sites\/2\/2023\/01\/phe_360_icon_new2.svg\" alt=\"Maintenance of Phe concentrations icon\" \/>                                                <\/div>\n                                                                                    <\/div>\n                                                                            <\/figure>\n                                                                                    <\/div>\n                                                \t\t<\/div>\n\t<\/div>\n<\/div>\n\n<div id=\"50%\" class=\"block split-content bg-band bg-band-white block-zero-top block-zero-bottom\" data-muted-autoplay=\"false\">\n\t<div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t                                                                <div class=\"content-block\">\n                                                                                                                                                                                                                                                                                    \n                                    \n                                                                                                                \n                                    \n                                    <figure>\n                                        <div class=\"image image-rounded\">\n                                                                                            <img decoding=\"async\" class=\"\" src=\"https:\/\/hcp.biomarin.com\/en-us\/pku\/wp-content\/uploads\/sites\/2\/2024\/05\/50percent_fact_2.svg\" alt=\"\" \/>                                                                                    <\/div>\n                                                                            <\/figure>\n                                                                                    <\/div>\n                    \n                                            <div class=\"content-block\">\n                                                                                                <h2>Re-engaging lost-to-follow-up young adults and adults with PKU is important<\/h2>\n<ul>\n<li>Lost-to-follow-up adults have poor PKU management and outcomes compared with patients who attend clinic regularly<sup>2<\/sup><\/li>\n<li>ACMG guidelines state that patients who have stopped therapy (dietary or medication) will likely see improvements in their symptoms if they return to management<sup>2<\/sup><\/li>\n<\/ul>\n                                                                                    <\/div>\n                                                \t\t<\/div>\n\t<\/div>\n<\/div>\n\n<div id=\"What-experts-say\" class=\"block wrapped-content bg-band bg-band-secondary block-zero-top block-zero-bottom block-remove-bottom-padding\">\n    <div class=\"wrapper\">\n        <div class=\"inner-wrapper\">\n                \n<div id=\"acf-block-65df35267a987\" class=\"block-wysiwyg\">\n            <h3 style=\"text-align: center\">What experts say about re-engaging patients who are lost to follow-up<sup>7<\/sup>*<\/h3>\n    <\/div>\n        <\/div>\n    <\/div>\n<\/div>\n\n<div id=\"acf-block-63f65a277e9bc\" class=\"block cards cards-3-col bg-band bg-band-secondary block-zero-top block-zero-bottom block-remove-top-padding block-remove-bottom-padding\">\n\t<div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t\t<div class=\"cards-title\">\n\t\t\t    \t\t\t\t\t\t\t<\/div>\n\t\t\t<div class=\"cards-wrapper\">\n\t\t\t    \n<div id=\"acf-block-63f65a277e9cc\" class=\"card\" data-muted-autoplay=\"false\">\n        <div class=\"card-content\">\n                \n                                                                                                            <h4 style=\"color: #b50056\">Communicate any new treatment and dietary options for PKU<sup>7<\/sup><\/h4>\n                                                                                    <\/div>\n<\/div>\n\n<div id=\"acf-block-63f65a277e9db\" class=\"card\" data-muted-autoplay=\"false\">\n        <div class=\"card-content\">\n                \n                                                                                                            <h4 style=\"color: #b50056\">Ensure that patients are aware of current management guidelines for PKU<sup>7<\/sup><\/h4>\n                                                                                    <\/div>\n<\/div>\n\n<div id=\"acf-block-63f65a277e9ec\" class=\"card\" data-muted-autoplay=\"false\">\n        <div class=\"card-content\">\n                \n                                                                                                            <h4 style=\"color: #b50056\">Recognize and address the neuropsychological and neurocognitive aspects of PKU<sup>7<\/sup><\/h4>\n                                                                                    <\/div>\n<\/div>\n\n<div id=\"acf-block-63f65a277ea0b\" class=\"card\" data-muted-autoplay=\"false\">\n        <div class=\"card-content\">\n                \n                                                                                                            <h4 style=\"color: #b50056\">Prioritize motivated lost-to-follow-up adult patients<sup>7<\/sup><\/h4>\n                                                                                    <\/div>\n<\/div>\n\n<div id=\"acf-block-63f65a277ea19\" class=\"card\" data-muted-autoplay=\"false\">\n        <div class=\"card-content\">\n                \n                                                                                                            <h4 style=\"color: #b50056\">Evaluate new approaches of outreach to lost-to-follow-up adult patients<sup>7<\/sup><br \/>\n<\/h4>\n                                                                                    <\/div>\n<\/div>\n\n<div id=\"acf-block-63f65a277ea26\" class=\"card\" data-muted-autoplay=\"false\">\n        <div class=\"card-content\">\n                \n                                                                                                            <h4 style=\"color: #b50056\">Formalize approaches to track and\/or identify lost-to-follow-up adult patients<sup>7<\/sup><\/h4>\n                                                                                    <\/div>\n<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n<div id=\"**\" class=\"block wrapped-content bg-band bg-band-secondary block-zero-top block-zero-bottom block-remove-top-padding\">\n    <div class=\"wrapper\">\n        <div class=\"inner-wrapper\">\n                \n<div id=\"acf-block-65df39f48860c\" class=\"block-wysiwyg\">\n            <p><small>*Based on 2 publications summarizing results from a focus group of 8 lost-to-follow-up adults with PKU observed by 10 clinicians, followed by an advisory session with the group of physicians, and an online survey of 55 US PKU clinics an Expert Meeting of 15 members from US PKU clinics. Funded by BioMarin.<\/small><\/p>\n    <\/div>\n        <\/div>\n    <\/div>\n<\/div>\n\n<div id=\"Expert-opinions\" class=\"block wrapped-content bg-band bg-band-white block-zero-top block-zero-bottom\">\n    <div class=\"wrapper\">\n        <div class=\"inner-wrapper\">\n                \n<div id=\"acf-block-63f65a277ea3f\" class=\"block-wysiwyg\">\n            <h2 style=\"text-align: left\">Expert opinions for managing returning lost-to-follow-up patients with PKU<sup>8*<\/sup><\/h2>\n    <\/div>\n\n<figure id=\"acf-block-63f65a277ea51\">\n    <div class=\"image image-responsive image-rounded\">\n                    <div class=\"image-desktop\">\n\t\t\t    <img decoding=\"async\" class=\"\" src=\"https:\/\/hcp.biomarin.com\/en-us\/pku\/wp-content\/uploads\/sites\/2\/2023\/03\/chemical_structure_3.svg\" alt=\"Safe hand, partner, individual and additional support icons\" \/>\t\t\t<\/div>\n\t\t\t<div class=\"image-mobile\">\n\t\t\t    <img decoding=\"async\" class=\"\" src=\"https:\/\/hcp.biomarin.com\/en-us\/pku\/wp-content\/uploads\/sites\/2\/2023\/05\/chemical_structure_4.svg\" alt=\"\" \/>\t\t\t<\/div>\n            <\/div>\n    <\/figure>\n        <\/div>\n    <\/div>\n<\/div>\n\n<div id=\"acf-block-63f65a277ea62\" class=\"block wrapped-content block-tight-top block-zero-bottom\">\n    <div class=\"wrapper\">\n        <div class=\"inner-wrapper\">\n                \n<div id=\"acf-block-63f65a277ea6f\" class=\"block-wysiwyg\">\n            <h2>Learn more about PKU<\/h2>\n    <\/div>\n        <\/div>\n    <\/div>\n<\/div>\n\n<div id=\"acf-block-66428d7510ae1\" class=\"block call-to-action call-to-action-no-overlay\">\n    <div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t\t<div class=\"box\" style=\"background-image: url(https:\/\/hcp.biomarin.com\/en-us\/pku\/wp-content\/uploads\/sites\/2\/2024\/03\/Screenshot-2024-03-12-at-16.59.18.png?v=0.85);\">\n\t\t\t\t<div class=\"overlay\"><\/div>\n\t\t\t\t<div class=\"cta-content\">\n\t\t\t\t                            <div class=\"cta-image\">\n                            <img decoding=\"async\" class=\"\" src=\"https:\/\/hcp.biomarin.com\/en-us\/pku\/wp-content\/uploads\/sites\/2\/2024\/05\/calendar.svg\" alt=\"\" \/>                        <\/div>\n                    \t\t\t\t\t<div class=\"cta-content-main\">\n                        <div class=\"content-block\">\n\t\t\t\t\t        \t\t\t\t\t        \t\t\t\t\t\t        <h2 class=\"h3\">Stay current with PKU news and events\n<\/h2>\n\t\t\t\t\t\t    \t\t\t\t\t\t    \t\t\t\t\t    <\/div>\n\t\t\t\t\t                                <div class=\"content-block\">\n                                <p><a class=\"button button-arrow\" href=\"https:\/\/hcp.biomarin.com\/en-us\/pku\/events\/\" target=\"_self\">View Conference Calendar<\/a><\/p>\n                            <\/div>\n\t\t\t\t\t                        <\/div>\n\t\t\t\t<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n<div id=\"acf-block-63f65a277ea62\" class=\"block wrapped-content block-tight-top block-tight-bottom\">\n    <div class=\"wrapper\">\n        <div class=\"inner-wrapper\">\n                \n<div id=\"acf-block-63f65a277ea6f\" class=\"block-wysiwyg\">\n            <p><small><strong>References: 1.<\/strong> Ceberio L, Hermida \u00c1, Venegas E, et al. Phenylketonuria in the adult patient. <em>Expert Opin Orphan Drugs<\/em>. 2019;7(6):265-276. <strong>2.<\/strong> Vockley J, Andersson HC, Antshel KM, et al. American College of Medical Genetics and Genomics Therapeutic Committee. Phenylalanine hydroxylase deficiency: diagnosis and management guidelines. <em>Genet Med<\/em>. 2014;16(2):188-200. <strong>3.<\/strong> Bilder DA, Noel JK, Baker ER, et al. Systematic review and meta-analysis of neuropsychiatric symptoms and executive functioning in adults with phenylketonuria. <em>Dev Neuropsychol<\/em>. 2016;41(4):245-260. <strong>4.<\/strong> Evinc SG, Pektas E, Foto-\u00d6zdemir D, et al. Cognitive and behavioral impairment in mild hyperphenylalaninemia. <em>Turk J Pediatr.<\/em> 2018;60(6):617-624. <strong>5.<\/strong> Jahja R, Huijbregts S, de Sonneville LMJ, van der Meere JJ, van Spronsen FJ. Neurocognitive evidence for revision of treatment targets and guidelines for phenylketonuria. <em>J Pediatr<\/em>. 2014;164(4):895-899. <strong>6.<\/strong> Berry SA, Brown C, Grant M, et al. Newborn screening 50 years later: access issues faced by adults with PKU. <em>Genet Med<\/em>. 2012:1-9. <strong>7.<\/strong> Beazer J, Breck J, Eggerding C, et al. the PKU Lost to Follow-up Recommendations Group. Strategies to engage lost to follow-up patients with phenylketonuria in the United States: best practice recommendations. <em>Mol Genet Metab Rep<\/em>. 2020;23:100571. doi: 10.1016\/j.ymgmr.2020.100571. <strong>8.<\/strong> Thomas J, Nguyen-Driver M, Bausell H, Breck J, Zambrano J, Birardi V. Strategies for successful long-term engagement of adults with phenylalanine hydroxylase deficiency returning to the clinic. <em>J Inborn Errors Metab Screen<\/em>. 2017;5:1-9.\u00a0<\/small><\/p>\n    <\/div>\n        <\/div>\n    <\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":0,"parent":565,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.1 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Managing phenylketonuria (PKU) l Lowering Phe Concentrations<\/title>\n<meta name=\"description\" content=\"Lowering Phe levels is recognized as the key strategy in managing phenylketonuria (PKU). 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