{"id":255,"date":"2022-09-26T22:43:51","date_gmt":"2022-09-26T22:43:51","guid":{"rendered":"https:\/\/naglazymehcp-dev-001.azurewebsites.net\/en-us\/naglazyme\/?page_id=255"},"modified":"2023-05-25T15:36:59","modified_gmt":"2023-05-25T15:36:59","slug":"importance-of-compliance","status":"publish","type":"page","link":"https:\/\/hcp.biomarin.com\/en-us\/naglazyme\/importance-of-compliance\/","title":{"rendered":"Importance of Compliance"},"content":{"rendered":"<div id=\"acf-block-641c73a6efeb5\" class=\"block wrapped-content block-tight-bottom\">\n    <div class=\"wrapper\">\n        <div class=\"inner-wrapper\">\n                \n<div id=\"acf-block-641c73a6eff17\" class=\"block-wysiwyg\">\n            <h1>Compliance is key to achieve sustained results with NAGLAZYME<sup>\u00ae<\/sup> (galsulfase) therapy<sup>1,2<\/sup><\/h1>\n<p>Enzyme replacement therapy (ERT) is lifelong. In order for the patient to benefit from the treatment, NAGLAZYME<sup>\u00ae<\/sup> (galsulfase) must be infused regularly, on a weekly basis. If therapy stops, glycosaminoglycans will again build up, and symptoms may return. It is important to help patients and families understand that results vary and some improvements occur over a long period of time.<\/p>\n    <\/div>\n        <\/div>\n    <\/div>\n<\/div>\n\n<div id=\"acf-block-641c73a6eff3d\" class=\"block call-to-action block-tight-top block-tight-bottom\">\n    <div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t\t<div class=\"box\" style=\"\">\n\t\t\t\t<div class=\"overlay\"><\/div>\n\t\t\t\t<div class=\"cta-content\">\n\t\t\t\t    \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    \t\t\t\t\t\t        <p>Phase 3 data and long-term survey data show that compliance with weekly infusions results in sustained improvement in endurance, pulmonary function, and urinary glycosaminoglycan levels.<sup>1,2<\/sup><\/p>\n\t\t\t\t\t\t    \t\t\t\t\t    <\/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-641c73a6eff54\" 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-641c73a6eff7c\" class=\"block-wysiwyg\">\n            <p>Clinicians can aid in compliance by helping patients and caregivers to manage key deterrents, such as IV pain as well as logistical issues.<\/p>\n<h2>Improving compliance with NAGLAZYME treatment<\/h2>\n<p>Compliance with NAGLAZYME therapy is key to successful MPS VI treatment. It is therefore critical that clinicians proactively address issues that may affect compliance over the long term.<sup>3<\/sup> Here are some key issues and ways to address them:<\/p>\n<ul>\n<li>Patients with MPS VI may have difficulty making infusion appointments due to work and school obligations or frequent illness or hospitalization\n<ul>\n<li>Be as flexible as possible in scheduling or rescheduling appointments<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li>Painful IV insertion can be a cause for anxiety, which could reduce compliance\n<ul>\n<li>Consider the use of topical anesthetics and other strategies to reduce the pain of IV insertion<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li>Transportation and other problems may arise\n<ul>\n<li>Utilize social services or call <a href=\"https:\/\/hcp.biomarin.com\/en-us\/naglazyme\/billing-reimbursement\/\">BioMarin RareConnections\u2122<\/a> for advice<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p>BioMarin RareConnections can help you in supporting patients and parents with reimbursement difficulties and other logistical challenges. <a href=\"https:\/\/hcp.biomarin.com\/en-us\/naglazyme\/billing-reimbursement\/\">Learn more<\/a>.<\/p>\n    <\/div>\n        <\/div>\n    <\/div>\n<\/div>\n\n<div id=\"acf-block-641c73a6eff99\" class=\"block wrapped-content block-tight-top\">\n    <div class=\"wrapper\">\n        <div class=\"inner-wrapper\">\n                \n<div id=\"acf-block-641c73a6f01bc\" class=\"block-wysiwyg\">\n            <h2>Intravenous (IV) access and pain control<\/h2>\n<p>Venipuncture is a painful procedure, and a cause of considerable anxiety in children. IV access in patients with MPS VI can present a special challenge due to:<\/p>\n<ul>\n<li>Thickened, rough skin<sup>4<\/sup><\/li>\n<li>Kinked veins<\/li>\n<li>Stiff joints (which can make it difficult for patients to straighten their arms)<sup>5<\/sup><\/li>\n<\/ul>\n<h2>Strategies to avoid IV challenges<\/h2>\n<p>Pain control and reduction of anxiety with IV access should be addressed at the initiation of therapy. Methods to reduce discomfort include<sup>6<\/sup>:<\/p>\n<ul>\n<li>Topical anesthetics<\/li>\n<li>Warming the limb prior to venipuncture<\/li>\n<li>Advising the patient and parents to maintain good hydration before infusion<\/li>\n<\/ul>\n    <\/div>\n        <\/div>\n    <\/div>\n<\/div>\n\n<div id=\"acf-block-641c73a6f01f5\" class=\"block call-to-action block-tight-top block-tight-bottom\">\n    <div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t\t<div class=\"box\" style=\"\">\n\t\t\t\t<div class=\"overlay\"><\/div>\n\t\t\t\t<div class=\"cta-content\">\n\t\t\t\t    \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\">Take the sting out of needles\n<\/h2>\n\t\t\t\t\t\t    \t\t\t\t\t\t    \t\t\t\t\t\t        <p>Download a brochure for patients and caregivers to aid in easing or preventing venipuncture pain. It is recommended that the clinician consult a child life specialist prior to the first infusion and again as needed.<\/p>\n\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-ghost button-download\" href=\"https:\/\/hcp.biomarin.com\/en-us\/naglazyme\/wp-content\/uploads\/sites\/2\/2022\/10\/NGLZM_Patient_Needle_Fear_Brochure.pdf?v=0.3\" target=\"_blank\">Download Needle Fear Brochure<\/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-641c73a6f020d\" class=\"block wrapped-content block-tight-top\">\n    <div class=\"wrapper\">\n        <div class=\"inner-wrapper\">\n                \n<div id=\"acf-block-641c73a6f022f\" class=\"block-wysiwyg\">\n            <h2>Patient education and support<\/h2>\n<p>Caring for patients with chronic conditions poses specific challenges. While many patients and families are well informed about MPS VI, they may still have a range of questions and concerns. Therefore, it\u2019s important to:<\/p>\n<ul>\n<li>Educate patients and their families regarding their treatment options<\/li>\n<li>Encourage families to speak to others who have had experience with MPS VI and enzyme replacement therapy<\/li>\n<\/ul>\n<h2>Be a patient advocate<\/h2>\n<p>Patients with MPS VI often face pain and debility, leading to emotional and psychological problems.<sup>7<\/sup> To help patients, clinicians are encouraged to provide strong psychosocial support by<sup>8<\/sup>:<\/p>\n<ul>\n<li>Engaging in individual counseling<\/li>\n<li>Encouraging interaction with a multidisciplinary team of providers<\/li>\n<li>Promoting support groups and communication with other patients and caregivers<sup>8,9<\/sup><\/li>\n<\/ul>\n<p><a href=\"https:\/\/hcp.biomarin.com\/en-us\/naglazyme\/mps-vi-management\/home-infusion\/\">Some patients may be able to receive their NAGLAZYME infusions at home \u00bb<\/a><\/p>\n    <\/div>\n        <\/div>\n    <\/div>\n<\/div>\n\n<div id=\"acf-block-641c73a6f0553\" class=\"block references\">\n    <div class=\"wrapper\">\n\t\t<div class=\"inner-wrapper\">\n\t\t    \t\t\t    <h4>References:\n<\/h4>\n\t\t\t\t\t\t                <ol>\n                                                                                                                        <li><span>Harmatz P, Giugliani R, Schwartz IVD <em>et al<\/em>; MPS VI Study Group. Long-term follow-up of endurance and safety outcomes during enzyme replacement therapy for mucopolysaccharidosis VI: final results of three clinical studies of recombinant human N-acetylgalactosamine 4-sulfatase. <em>Mol Genet Metab<\/em>. 2008;94(4):469-475. doi:10.1016\/j.ymgme.2008.04.001.\n<\/span><\/li>\n                                                                                                                                                <li><span>Giugliani R, Lampe C, Guffon N, <em>et al<\/em>. Natural history and galsulfase treatment in mucopolysaccharidosis VI (MPS VI, Maroteaux\u2013Lamy syndrome)\u201410-year follow-up of patients who previously participated in an MPS VI Survey Study. <em>Am J Med Genet A<\/em>. 2014;164A(8):1953-1964. doi:10.1002\/ajmg.a.36584.\n<\/span><\/li>\n                                                                                                                                                <li><span>NAGLAZYME [package insert]. Novato, CA: BioMarin Pharmaceutical Inc; 2019.\n<\/span><\/li>\n                                                                                                                                                <li><span>Tran et al., <em>Pediatr Dermatol<\/em>. 2016 Nov;33(6):594-601.\n<\/span><\/li>\n                                                                                                                                                <li><span>Valayannopoulos et al. <em>Orphanet Journal of Rare Diseases<\/em> 2010, 5:5.\n<\/span><\/li>\n                                                                                                                                                <li><span>WHO guidelines on drawing blood: best practices in phlebotomy. Accessed: https:\/\/www.euro.who.int\/__data\/assets\/pdf_file\/0005\/268790\/WHO-guidelines-on-drawing-blood-best-practices-in-phlebotomy-Eng.pdf\n<\/span><\/li>\n                                                                                                                                                <li><span>Holley UA. Social isolation: a practical guide for nurses assisting clients with chronic illness. <em>Rehabil Nurs<\/em>. 2007;32(2):51-56.\n<\/span><\/li>\n                                                                                                                                                <li><span>Wilcox WR. Lysosomal storage disorders: the need for better pediatric recognition and comprehensive care. <em>J Pediatr.<\/em> 2004;144(5 suppl):S3-S14.\n<\/span><\/li>\n                                                                                                                                                <li><span>Lindeke LL, Leonard BJ, Presler B, Garwick A. Family-centered care coordination for children with special needs across multiple settings. <em>J Pediatr<\/em> <em>Health Care<\/em>. 2002;16(6):290-297.\n<\/span><\/li>\n                                                            <\/ol>\n\t\t\t\t\t<\/div>\n\t<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":4,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"class_list":["post-255","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Naglazyme | HCP The Importance of Compliance<\/title>\n<meta name=\"description\" content=\"Compliance with NAGLAZYME therapy is key to successful MPS VI treatment. 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