For Patients

Information for Patients on Participating in the PICOS Study

The PICOS App – your digital companion in intensive care!

After a stay in the intensive care unit (ICU), many patients often experience mental and physical symptoms such as concentrating difficulty or muscle weakness. Such symptoms are referred to as Post-Intensive Care Syndrome (PICS). In addition to a possible reduction in quality of life, long-term inpatient treatment and outpatient follow-up may be required.

The DISTANCE project, funded by the German Federal Ministry of Education and Research (BMBF), aims to improve aftercare following an ICU stay. As part of DISTANCE, the PICOS Study investigates the physical and psychological effects of an ICU stay to develop improved treatment options. If you take part in the study, your physical and psychological symptoms will be documented for one year after your ICU stay, so that we can offer you and other patients better treatment in the future.

How you will benefit from participating in the PICOS Study

You will have access to the PICOS App, where you can track your physical and mental health, including sleep duration and quality, physical activity, and blood pressure.

The PICOS App gives you a long-term overview of how your health is developing.

You can use the PICOS App as a planner for your medication intake, doctor's appointments and other therapeutic measures.

You will have the opportunity to speak directly with a doctor at regular follow-up visits.

The PICOS App: Support for daily self-care

The PICOS App is designed to help you manage your recovery after you leave the hospital. By regularly entering information about your physical and mental well-being into the app, you will receive a comprehensive overview of your individual health status. In addition, the study will include four follow-up visits to assess your current health status.

Future patients can also benefit from your participation in the PICOS Study: By using the app, you will generate data that will further research into new treatment and therapy options for critical care patients. The security of your data is a top priority. It will be encrypted and made available to medical researchers in accordance with applicable privacy regulations.

You can use the PICOS App after our study assistant has informed you and installed the mobile application on your smartphone. You will also receive your login information from our study assistant.

How to participate in the PICOS Study

1. Eligibility:

Before your first visit, we will assess your eligibility to participate in the PICOS Study. You are eligible if you are over 18 years old and have either been on mechanical ventilation for at least 24 hours or in an intensive care unit for at least 72 hours.

2. Patient briefing:

If you are eligible, our study assistant will explain the procedure and general conditions of the PICOS Study. You will have the opportunity to give your consent to participate.

3. Declaration of consent:

If you agree to participate in the PICOS Study, you will sign a consent form. You can withdraw your consent at any time without giving reasons.

4. Installation and activation of the PICOS Application:

You or our study assistant will install the PICOS App on your smartphone. You will then automatically receive the access data to activate the app by email.

5. Enter data:

Advanced data such as lab values or medications in the ICU will be entered into the PICOS App by our study assistant. Now you can use the app from home to document your health. We recommend that you enter your vital signs daily to get a comprehensive overview of your health.

6. Follow-up examinations:

Follow-up visits will be scheduled at the hospital and after three, six, and 12 months. Your physical and mental health will be assessed holistically.

The following tests will be performed:

Blood pressure and heart rate, ECG, 2-minute walk test, Tests to assess cognitive performance and quality of life

7. Other questions:

Do you have questions about the PICOS Study? Contact our study assistance. They will be happy to help you!

Meeting patient needs

We know that patients suffering from physical and psychological problems after their stay in intensive care have special needs when using a health app. To ensure that the PICOS App meets these needs, we conducted a preliminary study with 130 ICU patients to determine their needs and expectations for the app.

The initial feedback was overwhelmingly positive. Patients saw the app as a valuable self-management tool that allowed them to be more involved in their own healthcare. Based on the results of this preliminary study, the PICOS App was further developed in terms of content and technology. In the current study, we are also asking you about your experiences using the app so that we can continue to develop the PICOS App and make it as user-friendly as possible.

PICOS-App | Informations for Patients

Status: 04/2024

German Sepsis Help e. V. represents patients in DISTANCE

The German Sepsis Help e. V. (Deutsche Sepsis-Hilfe e. V.) is the patient organization supporting the DISTANCE project in order to optimally represent the needs of patients beyond the study. With more than 350 members, German Sepsis Help advocates for the needs of sepsis patients and their families.

Sepsis is an exaggerated or weak immune response of the body to an infection, which can lead to life-threatening organ failure. It can be caused by bacteria, viruses or contaminated open wounds, which is why sepsis can occur during hospitalization. People with sepsis often need to be treated in intensive care units. Representatives of German Sepsis Help are advising DISTANCE on the development of the PICOS App and promoting its use within the organization.