{"id":6908,"date":"2025-09-22T12:01:59","date_gmt":"2025-09-22T10:01:59","guid":{"rendered":"https:\/\/alpha1-deutschland.org\/?p=6908"},"modified":"2025-09-22T12:02:54","modified_gmt":"2025-09-22T10:02:54","slug":"alpha-patientenfragebogen","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/alpha-patientenfragebogen","title":{"rendered":"ALPHA \u2013 The new patient questionnaire for assessing quality of life in alpha-1 antitrypsin deficiency"},"content":{"rendered":"<div id=\"fws_6a8da71eb1a39\"  data-column-margin=\"default\" data-midnight=\"dark\"  class=\"wpb_row vc_row-fluid vc_row full-width-section\"  style=\"padding-top: 0px; padding-bottom: 50px; \"><div class=\"row-bg-wrap\" data-bg-animation=\"none\" data-bg-animation-delay=\"\" data-bg-overlay=\"false\"><div class=\"inner-wrap row-bg-layer\" ><div class=\"row-bg viewport-desktop\"  style=\"\"><\/div><\/div><\/div><div class=\"row_col_wrap_12 col span_12 dark left\">\n\t<div  class=\"vc_col-sm-12 wpb_column column_container vc_column_container col no-extra-padding inherit_tablet inherit_phone\"  data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t\t<div class=\"wpb_wrapper\">\n\t\t\t\t<div class=\"vc_separator wpb_content_element vc_separator_align_center vc_sep_width_100 vc_sep_border_width_5 vc_sep_pos_align_center vc_sep_color_grey wpb_content_element vc_separator-has-text\" ><span class=\"vc_sep_holder vc_sep_holder_l\"><span class=\"vc_sep_line\"><\/span><\/span><h4>Author<\/h4><span class=\"vc_sep_holder vc_sep_holder_r\"><span class=\"vc_sep_line\"><\/span><\/span>\n<\/div>\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<p style=\"font-weight: 400;\"><strong>Marion Wilkens, as appeared in <a href=\"https:\/\/alpha1-deutschland.org\/en\/alpha1-journal\/\">Alpha1 Journal 1\/2025<\/a>.<\/strong><\/p>\n<\/div>\n\n\n\n<div class=\"divider-wrap\" data-alignment=\"default\"><div style=\"margin-top: 25px; height: 5px; margin-bottom: 25px;\" data-width=\"100%\" data-animate=\"\" data-animation-delay=\"\" data-color=\"default\" class=\"divider-border\"><\/div><\/div>\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<p>Alpha-1 antitrypsin deficiency (AATD) is a rare, inherited disorder that can primarily affect the lungs and liver. Affected individuals often develop chronic obstructive pulmonary disease (COPD) or liver problems \u2013 sometimes at a young age. To ensure that treatment is tailored as closely as possible to the patients&#039; needs, it is crucial to understand their true well-being: physically, mentally, and in their daily lives. The goal of the PROM (Patient Reported Outcome Measures) project was to develop a questionnaire to assess quality of life from the perspective of those affected.<\/p>\n<p>Instead of developing a completely new questionnaire, the researchers searched over 1200 scientific articles and examined over 400 existing questionnaires. Crucially, the questionnaires had to be simple and easy to understand, cover important aspects of the disease (general, lung- and liver-specific), be available in German, and be suitable for both studies and daily practice.<\/p>\n<p>Following a multi-stage selection process involving experts and patient representatives, a combined questionnaire was developed, also known as ALPHA (Assessment of Lung, Liver and Patient Health in Alpha-1). It consists primarily of three established questionnaires:<\/p>\n<ol>\n<li>EQ-5D-5L (EuroQol 5 Dimensions 5 Levels): Assesses general quality of life \u2013 e.g., mobility, pain, mood<\/li>\n<li>CAT (COPD Assessment Test): Refers to the lungs \u2013 e.g., cough, shortness of breath, energy levels.<\/li>\n<li>CLDQ (Chronic Liver Disease Questionnaire): Relates to the liver \u2013 e.g., fatigue, abdominal discomfort, worries about the course of the disease.<\/li>\n<\/ol>\n<\/div>\n\n\n\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>\n\t\t<div id=\"fws_6a8da71eb32d8\"  data-column-margin=\"default\" data-midnight=\"dark\"  class=\"wpb_row vc_row-fluid vc_row\"  style=\"padding-top: 0px; padding-bottom: 0px; \"><div class=\"row-bg-wrap\" data-bg-animation=\"none\" data-bg-animation-delay=\"\" data-bg-overlay=\"false\"><div class=\"inner-wrap row-bg-layer\" ><div class=\"row-bg viewport-desktop\"  style=\"\"><\/div><\/div><\/div><div class=\"row_col_wrap_12 col span_12 dark left\">\n\t<div  class=\"vc_col-sm-12 wpb_column column_container vc_column_container col no-extra-padding inherit_tablet inherit_phone\"  data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t\t<div class=\"wpb_wrapper\">\n\t\t\t\t<div class=\"divider-wrap\" data-alignment=\"center\"><div style=\"margin-top: 25px; width: 20%; height: 2px; margin-bottom: 25px;\" data-width=\"20%\" data-animate=\"\" data-animation-delay=\"\" data-color=\"accent-color\" class=\"divider-small-border\"><\/div><\/div><p style=\"font-size: 30px;color: #004267;line-height: 2;text-align: center\" class=\"vc_custom_heading vc_do_custom_heading\" >Some of our members recently tested and supplemented the questionnaire, thereby significantly contributing to its quality.<\/p><div class=\"divider-wrap\" data-alignment=\"center\"><div style=\"margin-top: 25px; width: 20%; height: 2px; margin-bottom: 25px;\" data-width=\"20%\" data-animate=\"\" data-animation-delay=\"\" data-color=\"accent-color\" class=\"divider-small-border\"><\/div><\/div>\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>\n\t\t<div id=\"fws_6a8da71eb46df\"  data-column-margin=\"default\" data-midnight=\"dark\"  class=\"wpb_row vc_row-fluid vc_row\"  style=\"padding-top: 0px; padding-bottom: 0px; \"><div class=\"row-bg-wrap\" data-bg-animation=\"none\" data-bg-animation-delay=\"\" data-bg-overlay=\"false\"><div class=\"inner-wrap row-bg-layer\" ><div class=\"row-bg viewport-desktop\"  style=\"\"><\/div><\/div><\/div><div class=\"row_col_wrap_12 col span_12 dark left\">\n\t<div  class=\"vc_col-sm-12 wpb_column column_container vc_column_container col no-extra-padding inherit_tablet inherit_phone\"  data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t\t<div class=\"wpb_wrapper\">\n\t\t\t\t\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<p>The questionnaire was supplemented by additional questions that specifically address areas of life that are not adequately covered in the three standardized questionnaires.<\/p>\n<p>Some of our members tested and improved the questionnaire some time ago, thereby significantly contributing to its quality. The ALPHA questionnaire was subsequently tested for everyday usability and validity in specialized centers.<\/p>\n<p>The new instrument enables a comprehensive yet time-efficient assessment of quality of life in patients with ADD\/ADHD. This allows physicians to better understand their patients&#039; symptoms and needs and tailor treatment more effectively. Furthermore, the questionnaire can help to better evaluate therapies in clinical trials. The goal is to implement ALPHA in the future care and research of patients with ADD\/ADHD.<\/p>\n<p>We, the project team, believe that the PROM project makes an important contribution to improving care for AATM \u2013 by focusing more on what those affected themselves say about their health. They are the experts on their condition, and being heard makes a holistic approach possible.<\/p>\n<\/div>\n\n\n\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>","protected":false},"excerpt":{"rendered":"Author Marion Wilkens, published in Alpha1-Journal 1\/2025. Alpha-1 antitrypsin deficiency (AATD) is a rare, inherited disorder that can primarily affect the lungs and liver. Affected individuals often develop chronic obstructive pulmonary disease (COPD)...","protected":false},"author":1,"featured_media":6909,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[24,40],"tags":[],"class_list":["post-6908","post","type-post","status-publish","format-standard","has-post-thumbnail","category-alpha1-journal","category-forschung-und-studien"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>ALPHA \u2013 Neuer Fragebogen zur Lebensqualit\u00e4t bei Alpha-1<\/title>\n<meta name=\"description\" content=\"Mit dem PROM-Projekt (Patient Reported Outcome Measures) soll ein Fragebogen entwickelt werden, der die Lebensqualit\u00e4t aus Sicht der Betroffenen erfasst.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link 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