{"id":7166,"date":"2025-06-28T17:10:09","date_gmt":"2025-06-28T17:10:09","guid":{"rendered":"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/"},"modified":"2025-06-29T05:09:01","modified_gmt":"2025-06-29T05:09:01","slug":"effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study","status":"publish","type":"post","link":"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/","title":{"rendered":"Effects of commencing sapropterin therapy on quality of life for children with phenylketonuria and their families: a qualitative interview study"},"content":{"rendered":"<p>This article was originally published as: <strong>Effects of commencing sapropterin therapy on quality of life for children with phenylketonuria and their families: a qualitative interview study<\/strong><\/p>\n<p>Original Article Link: <a href='https:\/\/www.ajan.com.au\/index.php\/AJAN\/article\/view\/1272' target='_blank' rel='noopener'>Read Original Article<\/a><\/p>\n<p>Download PDF: <a href='https:\/\/www.ajan.com.au\/index.php\/AJAN\/article\/download\/1272\/798' target='_blank' rel='noopener'>Click Here to Download PDF<\/a><\/p>\n<h2>Abstract<\/h2>\n<p>Background: Prior to 2018, sapropterin hydrochloride (BH4, Kuvan\u00ae) had not been used in Queensland, Australia, to treat sapropterin-responsive phenylketonuria (PKU). This gave our centre at the Queensland Children\u2019s Hospital the opportunity to assess the difference a new treatment makes to the quality of life of the child and family.<br \/>\nStudy design and methods: A qualitative study design was used. Forty parents of children with a sapropterin-responsive form of PKU (one parent per family) were invited to take part in a semi-structured one-on-one interview exploring their experiences and perspectives on commencing sapropterin therapy with their child. Thirty-eight parents met the eligibility criteria, 23 consented to participate, and 21 were able to be contacted for an interview. Data collected included family background and their experiences pre and post commencement of sapropterin therapy and its impact on their child(ren), diet, and physical and psychosocial wellbeing.<br \/>\nResults: Four key themes emerged from thematic analysis: a) psychosocial wellbeing, b) child health and nutrition, c) family economic benefits, and d) parent-child interactions. Overall, parents reported positive experiences and reduced impact of PKU on child, parent, and family quality of life following initiation of sapropterin therapy. The majority reported a sense of relief and optimism and expressed that they were able to manage their child\u2019s PKU more effectively than before.<br \/>\nConclusions: Sapropterin therapy is associated with physical and psychosocial benefits for children and families, including improved psychosocial wellbeing, parent-child relationship quality, and child health and nutrition.<br \/>\nImplications for research, policy, and practice: Commencement of sapropterin therapy can result in physical and psychosocial benefits for children with phenylketonuria and their families. Longer-term follow-up studies are warranted.<br \/>\nWhat is already known about the topic? <\/p>\n<p>PKU presents numerous and diverse challenges for children and their families and can negatively impact quality of life.<br \/>\nAdhering to strict dietary management requirements can be particularly challenging for children and adolescents.<br \/>\nSapropterin therapy, a relatively new treatment for PKU in Australia, can enable less severe dietary restriction and greater liberalisation of the low phenylalanine diet.<\/p>\n<p>What this paper adds <\/p>\n<p>Parents report considerable overall benefits for their child and family after commencing sapropterin therapy.<br \/>\nParents perceived improved child and family psychosocial wellbeing, parent-child relationship quality, and child health and nutrition, as well as socio-economic benefits.<br \/>\nSince many parents experience uncertainty and anxiety in relation to commencing sapropterin with their child, families may benefit from psychosocial support and monitoring before, during, and after the commencement of therapy.<\/p>\n<h2>Authors<\/h2>\n<ul>\n<li>Amy Mitchell<\/li>\n<li>Alina Morawska<\/li>\n<li>Evren Etel<\/li>\n<li>Japheth Adina<\/li>\n<li>Catherine Atthow<\/li>\n<li>Sally Smith<\/li>\n<li>Janette Spicer<\/li>\n<li>Carolyn Bursle<\/li>\n<li>Aoife Elliott<\/li>\n<li>Sara O&#8217;Neill<\/li>\n<li>Anita Inwood<\/li>\n<\/ul>\n<h2>Keywords<\/h2>\n<p>Child Health, Childhood Illness, Family, Metabolic, Quality of Life, Phenylketonuria<\/p>\n<h2>References<\/h2>\n<p>References not available for this article.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>This article was originally published as: Effects of commencing sapropterin therapy on quality of life for children with phenylketonuria and&#8230;<\/p>\n","protected":false},"author":21,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[124],"tags":[3903,3914,3915,3916,3917,2070],"class_list":["post-7166","post","type-post","status-publish","format-standard","hentry","category-articles","tag-child-health","tag-childhood-illness","tag-family","tag-metabolic","tag-phenylketonuria","tag-quality-of-life","wpcat-124-id"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Effects of commencing sapropterin therapy on quality of life for children with phenylketonuria and their families: a qualitative interview study - IJSSASS Repository<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Effects of commencing sapropterin therapy on quality of life for children with phenylketonuria and their families: a qualitative interview study - IJSSASS Repository\" \/>\n<meta property=\"og:description\" content=\"This article was originally published as: Effects of commencing sapropterin therapy on quality of life for children with phenylketonuria and...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/\" \/>\n<meta property=\"og:site_name\" content=\"IJSSASS Repository\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/ijssass\" \/>\n<meta property=\"article:published_time\" content=\"2025-06-28T17:10:09+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-06-29T05:09:01+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/ijssass.com\/journal\/wp-content\/uploads\/2023\/07\/c-users-user-desktop-logo-pnglogo-2.png\" \/>\n\t<meta property=\"og:image:width\" content=\"300\" \/>\n\t<meta property=\"og:image:height\" content=\"195\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"admin\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"admin\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/\"},\"author\":{\"name\":\"admin\",\"@id\":\"https:\/\/ijssass.com\/journal\/#\/schema\/person\/adf9bae5731958270e2140cfc1af3771\"},\"headline\":\"Effects of commencing sapropterin therapy on quality of life for children with phenylketonuria and their families: a qualitative interview study\",\"datePublished\":\"2025-06-28T17:10:09+00:00\",\"dateModified\":\"2025-06-29T05:09:01+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/\"},\"wordCount\":503,\"commentCount\":0,\"publisher\":{\"@id\":\"https:\/\/ijssass.com\/journal\/#organization\"},\"keywords\":[\"Child Health\",\"Childhood Illness\",\"Family\",\"Metabolic\",\"Phenylketonuria\",\"quality of life\"],\"articleSection\":[\"Articles\"],\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/\",\"url\":\"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/\",\"name\":\"Effects of commencing sapropterin therapy on quality of life for children with phenylketonuria and their families: a qualitative interview study - IJSSASS Repository\",\"isPartOf\":{\"@id\":\"https:\/\/ijssass.com\/journal\/#website\"},\"datePublished\":\"2025-06-28T17:10:09+00:00\",\"dateModified\":\"2025-06-29T05:09:01+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/ijssass.com\/journal\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Effects of commencing sapropterin therapy on quality of life for children with phenylketonuria and their families: a qualitative interview study\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/ijssass.com\/journal\/#website\",\"url\":\"https:\/\/ijssass.com\/journal\/\",\"name\":\"INTERNATIONAL JOURNAL OF SOCIAL SCIENCES AND SCIENTIFIC STUDIES\",\"description\":\"Open Access Library\",\"publisher\":{\"@id\":\"https:\/\/ijssass.com\/journal\/#organization\"},\"alternateName\":\"IJSSASS\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/ijssass.com\/journal\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"en-US\"},{\"@type\":\"Organization\",\"@id\":\"https:\/\/ijssass.com\/journal\/#organization\",\"name\":\"INTERNATIONAL JOURNAL OF SOCIAL SCIENCES AND SCIENTIFIC STUDIES\",\"alternateName\":\"IJSSASS\",\"url\":\"https:\/\/ijssass.com\/journal\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/ijssass.com\/journal\/#\/schema\/logo\/image\/\",\"url\":\"https:\/\/ijssass.com\/journal\/wp-content\/uploads\/2023\/07\/c-users-user-desktop-logo-pnglogo-3.png\",\"contentUrl\":\"https:\/\/ijssass.com\/journal\/wp-content\/uploads\/2023\/07\/c-users-user-desktop-logo-pnglogo-3.png\",\"width\":300,\"height\":195,\"caption\":\"INTERNATIONAL JOURNAL OF SOCIAL SCIENCES AND SCIENTIFIC STUDIES\"},\"image\":{\"@id\":\"https:\/\/ijssass.com\/journal\/#\/schema\/logo\/image\/\"},\"sameAs\":[\"https:\/\/www.facebook.com\/ijssass\"]},{\"@type\":\"Person\",\"@id\":\"https:\/\/ijssass.com\/journal\/#\/schema\/person\/adf9bae5731958270e2140cfc1af3771\",\"name\":\"admin\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/ijssass.com\/journal\/#\/schema\/person\/image\/\",\"url\":\"https:\/\/secure.gravatar.com\/avatar\/e2404e10f252fd74bce698fdfc0296b3cfb701b99d14951364bf9586aaa0c4a8?s=96&d=mm&r=g\",\"contentUrl\":\"https:\/\/secure.gravatar.com\/avatar\/e2404e10f252fd74bce698fdfc0296b3cfb701b99d14951364bf9586aaa0c4a8?s=96&d=mm&r=g\",\"caption\":\"admin\"},\"sameAs\":[\"https:\/\/ijssass.com\/journal\"],\"url\":\"https:\/\/ijssass.com\/journal\/author\/admin\/\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Effects of commencing sapropterin therapy on quality of life for children with phenylketonuria and their families: a qualitative interview study - IJSSASS Repository","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/","og_locale":"en_US","og_type":"article","og_title":"Effects of commencing sapropterin therapy on quality of life for children with phenylketonuria and their families: a qualitative interview study - IJSSASS Repository","og_description":"This article was originally published as: Effects of commencing sapropterin therapy on quality of life for children with phenylketonuria and...","og_url":"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/","og_site_name":"IJSSASS Repository","article_publisher":"https:\/\/www.facebook.com\/ijssass","article_published_time":"2025-06-28T17:10:09+00:00","article_modified_time":"2025-06-29T05:09:01+00:00","og_image":[{"width":300,"height":195,"url":"https:\/\/ijssass.com\/journal\/wp-content\/uploads\/2023\/07\/c-users-user-desktop-logo-pnglogo-2.png","type":"image\/png"}],"author":"admin","twitter_card":"summary_large_image","twitter_misc":{"Written by":"admin","Est. reading time":"2 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/#article","isPartOf":{"@id":"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/"},"author":{"name":"admin","@id":"https:\/\/ijssass.com\/journal\/#\/schema\/person\/adf9bae5731958270e2140cfc1af3771"},"headline":"Effects of commencing sapropterin therapy on quality of life for children with phenylketonuria and their families: a qualitative interview study","datePublished":"2025-06-28T17:10:09+00:00","dateModified":"2025-06-29T05:09:01+00:00","mainEntityOfPage":{"@id":"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/"},"wordCount":503,"commentCount":0,"publisher":{"@id":"https:\/\/ijssass.com\/journal\/#organization"},"keywords":["Child Health","Childhood Illness","Family","Metabolic","Phenylketonuria","quality of life"],"articleSection":["Articles"],"inLanguage":"en-US","potentialAction":[{"@type":"CommentAction","name":"Comment","target":["https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/#respond"]}]},{"@type":"WebPage","@id":"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/","url":"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/","name":"Effects of commencing sapropterin therapy on quality of life for children with phenylketonuria and their families: a qualitative interview study - IJSSASS Repository","isPartOf":{"@id":"https:\/\/ijssass.com\/journal\/#website"},"datePublished":"2025-06-28T17:10:09+00:00","dateModified":"2025-06-29T05:09:01+00:00","breadcrumb":{"@id":"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/ijssass.com\/journal\/effects-of-commencing-sapropterin-therapy-on-quality-of-life-for-children-with-phenylketonuria-and-their-families-a-qualitative-interview-study\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/ijssass.com\/journal\/"},{"@type":"ListItem","position":2,"name":"Effects of commencing sapropterin therapy on quality of life for children with phenylketonuria and their families: a qualitative interview study"}]},{"@type":"WebSite","@id":"https:\/\/ijssass.com\/journal\/#website","url":"https:\/\/ijssass.com\/journal\/","name":"INTERNATIONAL JOURNAL OF SOCIAL SCIENCES AND SCIENTIFIC STUDIES","description":"Open Access Library","publisher":{"@id":"https:\/\/ijssass.com\/journal\/#organization"},"alternateName":"IJSSASS","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/ijssass.com\/journal\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"en-US"},{"@type":"Organization","@id":"https:\/\/ijssass.com\/journal\/#organization","name":"INTERNATIONAL JOURNAL OF SOCIAL SCIENCES AND SCIENTIFIC STUDIES","alternateName":"IJSSASS","url":"https:\/\/ijssass.com\/journal\/","logo":{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/ijssass.com\/journal\/#\/schema\/logo\/image\/","url":"https:\/\/ijssass.com\/journal\/wp-content\/uploads\/2023\/07\/c-users-user-desktop-logo-pnglogo-3.png","contentUrl":"https:\/\/ijssass.com\/journal\/wp-content\/uploads\/2023\/07\/c-users-user-desktop-logo-pnglogo-3.png","width":300,"height":195,"caption":"INTERNATIONAL JOURNAL OF SOCIAL SCIENCES AND SCIENTIFIC STUDIES"},"image":{"@id":"https:\/\/ijssass.com\/journal\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/www.facebook.com\/ijssass"]},{"@type":"Person","@id":"https:\/\/ijssass.com\/journal\/#\/schema\/person\/adf9bae5731958270e2140cfc1af3771","name":"admin","image":{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/ijssass.com\/journal\/#\/schema\/person\/image\/","url":"https:\/\/secure.gravatar.com\/avatar\/e2404e10f252fd74bce698fdfc0296b3cfb701b99d14951364bf9586aaa0c4a8?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/e2404e10f252fd74bce698fdfc0296b3cfb701b99d14951364bf9586aaa0c4a8?s=96&d=mm&r=g","caption":"admin"},"sameAs":["https:\/\/ijssass.com\/journal"],"url":"https:\/\/ijssass.com\/journal\/author\/admin\/"}]}},"_links":{"self":[{"href":"https:\/\/ijssass.com\/journal\/wp-json\/wp\/v2\/posts\/7166","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ijssass.com\/journal\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/ijssass.com\/journal\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/ijssass.com\/journal\/wp-json\/wp\/v2\/users\/21"}],"replies":[{"embeddable":true,"href":"https:\/\/ijssass.com\/journal\/wp-json\/wp\/v2\/comments?post=7166"}],"version-history":[{"count":1,"href":"https:\/\/ijssass.com\/journal\/wp-json\/wp\/v2\/posts\/7166\/revisions"}],"predecessor-version":[{"id":8224,"href":"https:\/\/ijssass.com\/journal\/wp-json\/wp\/v2\/posts\/7166\/revisions\/8224"}],"wp:attachment":[{"href":"https:\/\/ijssass.com\/journal\/wp-json\/wp\/v2\/media?parent=7166"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/ijssass.com\/journal\/wp-json\/wp\/v2\/categories?post=7166"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/ijssass.com\/journal\/wp-json\/wp\/v2\/tags?post=7166"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}