{"id":6449,"date":"2023-06-28T17:40:12","date_gmt":"2023-06-28T15:40:12","guid":{"rendered":"https:\/\/alpha1-deutschland.org\/?p=6449"},"modified":"2025-04-16T17:52:27","modified_gmt":"2025-04-16T15:52:27","slug":"dr-rer-med-inga-jarosch-personalisierte-therapie-promise","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/dr-rer-med-inga-jarosch-personalisierte-therapie-promise","title":{"rendered":"Dr. rer. med. Inga Jarosch: Personalized Therapy PROMISE"},"content":{"rendered":"<div id=\"fws_6a75fe92a017d\"  data-column-margin=\"default\" data-midnight=\"dark\"  class=\"wpb_row vc_row-fluid vc_row full-width-section\"  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=\"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>Summary: Gabi Niethammer, as published in <a href=\"https:\/\/alpha1-deutschland.org\/en\/alpha1-journal\/\">Alpha1 Journal 1\/2023<\/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<h2><span style=\"color: #004267;\">The inactivity spiral: Effects of a chronic lung disease<\/span><\/h2>\n<p>The idea to start the PROMISE project began with an examination of the effects of COPD on the body and mind.<\/p>\n<p>The primary problem, shortness of breath, leads to a downward spiral of decreased physical activity, which in turn reduces endurance and strength. This, in turn, exacerbates the shortness of breath \u2013 a vicious cycle that, if left unchecked, can culminate in immobility. Furthermore, anxiety symptoms can intensify the shortness of breath and lead to psychosocial impairments. COPD, therefore, affects the whole person and has far-reaching consequences.<\/p>\n<h2><span style=\"color: #004267;\">Ways out of the vicious cycle <\/span><\/h2>\n<p>The best approach is multimodal programs, meaning programs that take place on several levels with various components. In addition to physiotherapy, physical training, and nutritional counseling, many other components are therefore used.<\/p>\n<p>The classic example of a multimodal program is inpatient pulmonary rehabilitation. Studies have shown, using COPD as an example, that rehabilitation as a multimodal measure is the most effective therapeutic approach to reduce shortness of breath, increase physical performance, and improve overall quality of life.<\/p>\n<p>The problem is that therapeutic measures work similarly to medications; that is, they are only effective as long as they are implemented. Therefore, one of the main tasks, and arguably the greatest challenge, is to transfer these measures from inpatient rehabilitation into everyday life and thus establish a long-term, health-promoting lifestyle.<\/p>\n<h2><span style=\"color: #004267;\">Barriers to training <\/span><\/h2>\n<p>Besides the well-known &quot;inner couch potato&quot;, there are various other barriers that prevent training from being carried out:<\/p>\n<ul>\n<li>No entry to gyms \u2013 primarily affects severely affected individuals (LTOT)<\/li>\n<li>Rural areas \u2013 long travel distances vs. resilience<\/li>\n<li>Fear Avoidance \u2013 Fear of shortness of breath during exertion<\/li>\n<li>Insufficient awareness of non-drug treatment options \u2022 Often inadequate expertise in the therapeutic field \u2013 e.g., correct training load<\/li>\n<\/ul>\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_6a75fe92a1c48\"  data-column-margin=\"default\" data-midnight=\"dark\"  class=\"wpb_row vc_row-fluid vc_row\"  style=\"padding-top: 50px; 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\" >The solution: PROMISE \u2013 Personalized training and respiratory physiotherapy for Alpha-1 antitrypsin deficiency<\/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_6a75fe92a2f5f\"  data-column-margin=\"default\" data-midnight=\"dark\"  class=\"wpb_row vc_row-fluid vc_row\"  style=\"padding-top: 20px; 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\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<p>The program was developed by Pneumo Factory and is thankfully financially supported by CSL Behring.<\/p>\n<p>The Pneumo Factory was founded by the speaker together with her colleague Tessa Schneeberger and is currently supported by two other therapists. All have many years of experience in pulmonology and have made it their goal to close as many small gaps in care as possible. PROMISE is their initial project.<\/p>\n<p>PROMISE is a multimodal concept with many individual components designed for maximum effectiveness. The one-on-one therapy is personalized and conducted under the guidance of competent and experienced pulmonologists, and is delivered in a hybrid format, combining in-person appointments at home with digital therapy.<\/p>\n<h2><span style=\"color: #004267;\">PROMISE goals <\/span><\/h2>\n<p>The functional health of individuals with AATM should be maintained or improved as much as possible. This means<\/p>\n<ul>\n<li>more quality of life<\/li>\n<li>greater physical performance and more strength<\/li>\n<li>fewer symptoms such as shortness of breath, anxiety, depression<\/li>\n<li>better self-management<\/li>\n<\/ul>\n<p>and leads secondarily to<\/p>\n<ul>\n<li>better social participation<\/li>\n<li>fewer sick days<\/li>\n<li>fewer acute exacerbations and hospital stays<\/li>\n<li>lower utilization of medical services<\/li>\n<\/ul>\n<h2><span style=\"color: #004267;\">Who can participate?<\/span><\/h2>\n<p>This program is designed for COPD patients with alpha-1 antitrypsin deficiency, regardless of whether they have mild or severe lung function impairments. Physical limitations can include, for example, shortness of breath when walking uphill or a subjectively perceived reduction in physical performance. Using a walker or requiring long-term oxygen therapy are not obstacles; on the contrary, it is particularly challenging, yet also crucial, for these groups to receive appropriate training to mitigate the significant deconditioning. Participation in the program is independent of alpha-1 antitrypsin replacement therapy (none\/Respreeza\/Prolastin) and is free of charge. It is essential that the patient&#039;s primary care physician or pulmonologist provides general training clearance.<\/p>\n<p>Currently, the project is limited to the German states of Bavaria and North Rhine-Westphalia, as well as the Frankfurt area. Once more experienced therapists are found in other parts of Germany, the project will be expanded geographically.<\/p>\n<h2><span style=\"color: #004267;\">Key components of PROMISE <\/span><\/h2>\n<p>PROMISE, as a multimodal training program, includes the following modules:<\/p>\n<ul>\n<li>Strength training, primarily using body weight and resistance bands<\/li>\n<li>Endurance training through walking, Nordic walking and\/or stationary cycling<\/li>\n<li>Respiratory physiotherapy with a focus on pursed-lip breathing<\/li>\n<li>Physical activity, such as stair training<\/li>\n<li>Knowledge and self-competence thanks to short, concise training courses<\/li>\n<li>meaningful measurements (assessment) before and after the program<\/li>\n<\/ul>\n<p>To monitor participant progress, physical performance is measured using the 1-minute stand-up test. Questionnaires assess quality of life and symptoms such as shortness of breath, depression, and anxiety. Optionally, physical activity can also be measured using the participant&#039;s own smartphone\/smartwatch. A scientific evaluation will be conducted to use the data for further learning and program optimization.<\/p>\n<h2><span style=\"color: #004267;\">Timeline<\/span><\/h2>\n<p>It starts with the patient making contact, continues with the aforementioned training approval signed by the treating physician, and then, after scheduling an appointment, the therapy begins. The first appointment takes place in person at the patient&#039;s home so that the therapist and patient can get to know each other and the therapist can incorporate the patient&#039;s environment into the training program.<\/p>\n<p>Following this, three digital appointments take place at two-week intervals, and in week eight, a further in-person appointment is held to discuss the long-term training plan, which patients will then manage independently. Between appointments, patients train independently according to their individual abilities.<\/p>\n<p>In week 16, there will be a follow-up session to jointly evaluate whether the program has met expectations and is sufficiently helping participants adhere to the therapy plan even without professional support. Measurements will be taken at all three in-person appointments. PROMISE utilizes the Red Medical video platform, which meets data protection requirements for medical patient contact. Participants will receive training with their therapist. Pulmonary exercise, both in-person and online, is an excellent complement to the program.<\/p>\n<p>CSL Behring has printed four brochures for the PROSMISE therapy program, covering the topics of endurance training, strength training, respiratory physiotherapy, and physical activity, and providing a theoretical overview of the program. Patients receive these brochures when they participate in PROSMISE.<\/p>\n<h2><span style=\"color: #004267;\">Current status of the program<\/span><\/h2>\n<ul>\n<li>Eleven participants have taken part so far.<\/li>\n<li>Two participants have already completed the program.<\/li>\n<li>Six participants completed their last in-person session by the beginning of May.<\/li>\n<li>CSL Behring has agreed to extend the project until mid-2024; there are approximately 25 places available.<\/li>\n<li>Since the Alpha-1 meeting in Bad Wildungen, 9 more patients have started the program.<\/li>\n<li>The first data presentation is planned to take place nationally at the DGP 2024 and internationally at the ERS 2024.<\/li>\n<\/ul>\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_6a75fe92a3f68\"  data-column-margin=\"default\" data-midnight=\"light\"  class=\"wpb_row vc_row-fluid vc_row has-row-bg-color  right_padding_30px left_padding_30px\"  style=\"padding-top: 30px; padding-bottom: 30px; --row-bg-color: #004267;\"><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 using-bg-color\"  style=\"background-color: #004267; \"><\/div><\/div><\/div><div class=\"row_col_wrap_12 col span_12 light 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<h2>Conclusion<\/h2>\n<p>Participants who completed the program said in feedback sessions that the training had improved their quality of life, that they felt better physically and mentally than before the therapy, that their stamina was better, and that they had gained muscle mass. This made everyday life considerably easier, which motivated the participants to definitely continue.<\/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":"AutorIn Zusammenfassung: Gabi Niethammer, so erschienen im Alpha1-Journal 1\/2023. Die Inaktivit\u00e4tsspirale: Auswirkungen einer chronischen Lungenerkrankung Die Idee, das Projekt PROMISE zu starten, begann mit der Auseinandersetzung, welche Auswirkungen eine COPD...","protected":false},"author":1,"featured_media":6292,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1,24,31],"tags":[],"class_list":["post-6449","post","type-post","status-publish","format-standard","has-post-thumbnail","category-allgemein","category-alpha1-journal","category-lungensport"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>PROMISE: Personalisierte Therapie bei Alpha-1 &amp; COPD<\/title>\n<meta name=\"description\" content=\"Das PROMISE-Programm bietet individuell abgestimmtes Training f\u00fcr Menschen mit AATM &amp; COPD \u2013 kostenlos, hybrid &amp; mit sp\u00fcrbarem Effekt.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/alpha1-deutschland.org\/en\/dr-rer-med-inga-jarosch-personalisierte-therapie-promise\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"PROMISE: Personalisierte Therapie bei Alpha-1 &amp; COPD\" \/>\n<meta property=\"og:description\" content=\"Das PROMISE-Programm bietet individuell abgestimmtes Training f\u00fcr Menschen mit AATM &amp; COPD \u2013 kostenlos, hybrid &amp; mit sp\u00fcrbarem Effekt.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/alpha1-deutschland.org\/en\/dr-rer-med-inga-jarosch-personalisierte-therapie-promise\/\" \/>\n<meta property=\"og:site_name\" content=\"Ihr Online Portal f\u00fcr Mitglieder und Interessierte\" \/>\n<meta property=\"article:published_time\" content=\"2023-06-28T15:40:12+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-04-16T15:52:27+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/2-22-lungensport-gruppe-online.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1920\" \/>\n\t<meta property=\"og:image:height\" content=\"1080\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Redaktion Alpha1 Deutschland e.V.\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Redaktion Alpha1 Deutschland e.V.\" \/>\n\t<meta name=\"twitter:label2\" content=\"Estimated reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"8 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/alpha1-deutschland.org\\\/dr-rer-med-inga-jarosch-personalisierte-therapie-promise#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/alpha1-deutschland.org\\\/dr-rer-med-inga-jarosch-personalisierte-therapie-promise\"},\"author\":{\"name\":\"Redaktion Alpha1 Deutschland e.V.\",\"@id\":\"https:\\\/\\\/alpha1-deutschland.org\\\/#\\\/schema\\\/person\\\/bbeaebe048b6117849fb55f50616d631\"},\"headline\":\"Dr. rer. med. 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