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Supplementary Online Content 2 Schmidt K, Worrack S, Von Korff M, et al. Effect of a primary care management intervention on mental health–related quality of life among survivors of sepsis: a randomized clinical trial. JAMA. doi:10.1001/jama.2016.7207. Sepsis Help Book Sepsis Monitoring Checklist Sepsis Case Manager Training Manual Sepsis PCP Manual Downloaded From: https://jamanetwork.com/ on 09/24/2021 Effect of a primary care management intervention on mental-health-related quality of life among survivors of sepsis: a randomized clinical trial Sepsis Help Book Sepsis survivors Monitoring and cOordination in OutpatienT Health care Study management: Prof. Dr. J. Gensichen (PI), Dr. med. Konrad Schmidt Patient manual Jena University Hospital, Institute of General Practice, Bachstr. 18, 07743 Jena. 2012_01_16_final rev. Telephone: +49 (0)3641/9395800; [email protected] 1 Downloaded From: https://jamanetwork.com/ on 09/24/2021 Table of Contents 1 Introduction ............................................................................................................................. 3 1.1 What is this manual about? ............................................................................................... 3 1.2 What is this manual good for? ........................................................................................... 3 1.3 The SMOOTH study at a glance........................................................................................ 4 2 Sepsis ..................................................................................................................................... 6 2.1 What is blood poisoning (Sepsis)? .................................................................................... 6 2.2 How dangerous is a sepsis? .............................................................................................. 7 2.3 Which symptoms indicate a sepsis? .................................................................................. 7 2.4 What does the physician do in case of a suspected sepsis? ............................................. 8 2.5 What exactly happens in your body? ................................................................................. 9 2.6 What happens in case of organ failure? ............................................................................ 9 2.7 The therapy at a glance ................................................................................................... 10 2.8 Summary: Sepsis ............................................................................................................ 11 3 What happens after a sepsis ................................................................................................. 12 3.1 Recovery often takes a long time .................................................................................... 12 3.2 Loss of weight and muscle atrophy ................................................................................. 12 3.2.1 Summary: Nutrition ..................................................................................................... 13 3.3 Effect on nerves and muscles ......................................................................................... 13 3.3.1 Summary: Nerve damage ........................................................................................... 15 3.4 Pain ................................................................................................................................. 16 3.4.1 Summary: Pain ........................................................................................................... 20 3.5 Deep sadness (Depression) ............................................................................................ 21 3.5.1 Summary: Sadness (depression) ................................................................................ 24 3.6 Forgetfulness and confusion (memory and concentration) .............................................. 24 3.6.1 Summary: Forgetfulness and Confusion ..................................................................... 25 3.7 Coping with bad memories, fright and fears (posttraumatic stress disorder) .................... 26 3.7.1 Summary: Memories and posttraumatic stress disorder .............................................. 28 3.8 Impairment of swallowing, tasting, hearing, or smelling ................................................... 29 3.8.1 Smelling and tasting ................................................................................................... 29 3.8.2 Hearing ....................................................................................................................... 31 3.8.3 Impaired ability to swallow (Dysphagy) ....................................................................... 31 3.9 Sleep disorders ............................................................................................................... 32 4 Coping with the disease ........................................................................................................ 33 4.1 Support for your relatives ................................................................................................ 33 5 Practical advice ..................................................................................................................... 35 5.1 Applying for social security benefits ................................................................................. 35 5.1.1 Disabled person’s pass (degree of disability) .............................................................. 35 5.1.2 Pension ...................................................................................................................... 36 5.1.3 Level of care ............................................................................................................... 36 5.1.4 Self-help groups.......................................................................................................... 37 Study management: Prof. Dr. J. Gensichen (PI), Dr. med. Konrad Schmidt Patient manual Jena University Hospital, Institute of General Practice, Bachstr. 18, 07743 Jena. 2012_01_16_final rev. Telephone: +49 (0)3641/9395800; [email protected] 2 Downloaded From: https://jamanetwork.com/ on 09/24/2021 1 Introduction This manual is specifically written to help you to recover from your severe illness. It is based on scientific knowledge and the long experience of physicians, specialists, and other patients who have overcome your illness. 1.1 What is this manual about? First the manual describes symptoms and causes of sepsis so that you get a better understanding of what happened to you in the first place. The next part is about after-effects that may occur after a sepsis. Of course you won’t have all these after-effects – simply skip those that don’t apply to you and read only those that interest you. The sections highlighted in orange summarize the most important points. In addition, this manual offers a lot of information and assistance for treating and providing self-help for your sepsis consequences. In the last part, you will find information on how to apply for social welfare benefits, like level of care, staying at a rehab center, or a degree of disability. Your family will find useful advice, too. Of course this manual does not replace talking with your family doctor. Only your doctor knows you, your medical history, and your diseases and can assess your situation completely to give you the best advice. 1.2 What is this manual good for? ● It can answer some of your important questions. ● It can help you and your family better understand what happened to you over the last months. ● It offers simple exercises and practical advice for your recovery and return to a good everyday life. What does this manual teach? - We want you to get an overview of the symptoms and causes of sepsis so that you better understand your own symptoms and the treatments you went through. - You’ll learn different after-effects of sepsis, including symptoms and possible therapies - You’ll get some suggestions for coming to terms with your illness. - We’ll offer some practical advice on how to apply for social welfare benefits. But the main objective of this manual is to show you how to help yourself. Together with your doctors and therapists, you can indeed do a lot for your health. Taking good care of yourself always promotes self-healing. For example preparing for visits to your doctor or keeping a small Study management: Prof. Dr. J. Gensichen (PI), Dr. med. Konrad Schmidt Patient manual Jena University Hospital, Institute of General Practice, Bachstr. 18, 07743 Jena. 2012_01_16_final rev. Telephone: +49 (0)3641/9395800; [email protected] 3 Downloaded From: https://jamanetwork.com/ on 09/24/2021 diary of your good and bad experiences can help you and your doctor to discover together many ways to help improve your health and feel better. After your difficult time in the hospital, we hope we can help you and your family to start a new chapter in life that is happy and full of confidence. 1.3 The SMOOTH study at a glance SMOOTH is an acronym for “Sepsis Survivors Monitoring and Coordination in Outpatient health- care.” In German it’s “Strukturierte Langzeitbegleitung für Patienten nach Sepsis.” This study has introduced long-term care for patients after sepsis for the first time. Your family doctor is involved in this study and is the key contact person for your care. At first, we help coordinate
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