Pernilla Lagergren

Background: The recovery after treatment of oesophageal and gastric cancer is complex, long, and incomplete. Patients have a “left alone” feeling after treatment and urge individualised support. The value of regular appointments with healthcare is criticised. Aim: To test our interactive smartphone application, named RECAPP, for monitoring of patients and informing them if and when there is a need for specific self-managed interventions, contact healthcare or no action required. RECAPP aims to help increase patients’ autonomy in symptom management and rehabilitation and thereby improving their daily lives and cancer survivorship.Method: RECAPP is developed using machine learning methods, based on data from of our nationwide and comprehensive cohort study. In this project, RECAPP will first be tested in 30 patients and adjusted as needed. Thereafter, we will conduct a nationwide randomised clinical trial of 250 oesophageal and gastric cancer patients. Half of patients will use RECAPP for 6 months while the other half follows standard of care. The primary outcome is reduction in symptom burden. Secondary outcomes are health-related quality of life, symptoms, weight development, patient empowerment, self-efficacy, survival, family caregiver burden and cost-effectiveness.Relevance: If RECAPP is proven to be a valuable tool in the follow-up management of these patients, it will be implemented in clinical practice for the benefit of patients, family caregivers and healthcare.

Esophageal cancer has a worse prognosis than most tumor diseases and it often requires a very extensive surgery for chance of cure. The recovery after surgery is often long, troublesome and incomplete. It is important to identify influential factors that have a negative effect on the patient's quality of life after the operation. Weight loss and eating difficulties are central problems of the patients after surgery that need to be counteracted. Esophageal cancer is also a "family disease" and it is of great importance to examine the needs of relatives. The project is based on three nation-wide Swedish data collections on patients who are operated on for esophageal cancer. A group of patients participate in the planning of the studies. In a clinical trial, a 12-week physical exercise program is tested to counter muscle loss and improve quality of life. Several patient-reported measures such as quality of life, stress, anxiety, depression and weight are collected / measured from repeatedly after surgery. Furthermore, data on the patient, tumor, treatment, care time and survival are collected. The patient's relatives participate by answering several questions in order to improve their situation as well. Through studies of high scientific quality about important issues for patients, we want to demonstrate ways to how the healthcare system can provide the opportunity for better recovery in patients undergoing surgery for esophageal cancer and support for their relatives. Factors that affect the recovery should be identifiable at an early stage and guide an individual follow-up with targeted measures, including physical activity. This project can lead to patients who are operated for esophageal cancer receiving the support and help they need to optimize their quality of life and adaptation to post-operative life.

Celiac disease HUNT4<br/><br/>Celiac disease is a disease that occurs frequently in the West, but still there is a lot we do not know about the disease. With this project we will try to find out more about the incidence, quality of life and challenges related to celiac disease and study whether it is possible to diagnose the disease only using blood tests.Celiac disease is a disease of the small intestine caused by gluten in wheat, barley and rye in genetically predisposed individuals. Celiac disease is frequent in the West and is characterized by diarrhea, weight loss and a lack of vitamins and minerals. The diagnosis is made by findings on blood tests and tissue samples from the duodenum. The incidence in Norway today is unknown, but is expected to be 1%. It is believed that one or more triggering factors are needed for the disease to develop in genetically predisposed people, but these factors are largely unknown. Celiac disease causes discomfort and changes in lifestyle in those affected, but how this affects the quality of life is little known. In this project, we will investigate the prevalence of celiac disease by blood test testing of the participants in HUNT4. Participants suspected of having celiac disease will be invited to gastroscopy with tissue samples to confirm the disease. Participants will then be invited to participate in a study on quality of life and challenges related to celiac disease. By linking to national registries, we will investigate how many people have already been diagnosed with celiac disease and how many have not been diagnosed before. We will also investigate whether celiac disease can be diagnosed only using blood tests, that is, without a stomach examination. This is already done in children, but not in adults. This will spare patients the troublesome examination that gastroscopy can be and it will save society the costs of gastroscopy. <br/>Main objective: In this project, we want to study the prevalence of celiac disease in a general Norwegian population. We will also investigate whether celiac disease can be diagnosed only using blood tests. Sub-goal: In addition, we want to study the incidence of undiagnosed cases of the disease in the population and the incidence of related symptoms, deficiency conditions and comorbidities. We also want to study the patients' experience of the disease and their health-related quality of life. <br/>Expected benefit for patients and relatives: This project will reveal the incidence of celiac disease in a general Norwegian population and the incidence of undiagnosed cases of celiac disease. This will have great transfer value to the entire Norwegian population. Among the HUNT participants, we will be able to identify individuals with celiac disease, so that dietary treatment can be started and complaints and deficiency conditions related to celiac disease can be treated. In this project, we have made contact with the user organization Norwegian Celiac Association and a representative from the association is an employee in the project. On behalf of its members, the Norwegian Celiac Association has wanted to focus on the complaints and challenges experienced by users with celiac disease, including challenges related to the gluten-free diet and general health complaints. We therefore want to identify problem areas for users through questionnaires and interviews, in addition to general measures of health-related quality of life for users. This can be used to identify problem areas for users, which can then be prevented and treated through increased attention to these problems. This can also be of great importance for relatives of users, especially in the case of celiac disease in children. If we can show that celiac disease can be diagnosed only with the help of blood tests also in adults, this could have great clinical significance and change celiac disease diagnostics.<br/>

Esophageal cancer has a worse prognosis than most tumor diseases, and it often requires a very extensive surgery for cure and recovery after surgery is often long, cumbersome and incomplete. Weight loss and eating difficulties are central problems after the operation and therefore important to counteract. It is important to identify factors that have a negative effect on the patient's quality of life after surgery. Cancer is also a "family disease" and it is of great importance to examine the needs of relatives. The project is based on three nation-wide Swedish data collections as well as a data collection at a large center for esophageal cancer in London on patients undergoing surgery for esophageal cancer. We shall In a clinical trial test whether a physical exercise program can counter muscle loss. Data on several patient-reported measures such as quality of life, stress, anxiety, depression and weight are available from repeatedly after surgery. Furthermore, data on the patient, tumor, treatment, care time and survival are collected. The patient's relatives are invited to answer several questions in order to improve their situation as well. Through studies of high scientific quality about important issues for patients, we want to demonstrate ways to how the healthcare system can provide the opportunity for better recovery in patients undergoing surgery for esophageal cancer and support for their relatives. Factors that affect the recovery should be identifiable at an early stage and guide an individualized follow-up with targeted measures, among other things. physical activity. This project can lead to patients who are operated for esophageal cancer receiving the support and help they need to optimize their quality of life and adaptation to post-operative life.

Esophageal cancer has a worse prognosis than most tumor diseases, and it often requires a very extensive surgery for cure and recovery after surgery is often long, cumbersome and incomplete. Weight loss and eating difficulties are central problems after the operation and therefore important to counteract. It is important to identify factors that have a negative effect on the patient's quality of life after surgery. Cancer is also a "family disease" and it is of great importance to examine the needs of relatives. The project is based on three nation-wide Swedish data collections as well as a data collection at a large center for esophageal cancer in London on patients undergoing surgery for esophageal cancer. We shall In a clinical trial test whether a physical exercise program can counter muscle loss. Data on several patient-reported measures such as quality of life, stress, anxiety, depression and weight are available from repeatedly after surgery. Furthermore, data on the patient, tumor, treatment, care time and survival are collected. The patient's relatives are invited to answer several questions in order to improve their situation as well. Through studies of high scientific quality about important issues for patients, we want to demonstrate ways to how the healthcare system can provide the opportunity for better recovery in patients undergoing surgery for esophageal cancer and support for their relatives. Factors that affect the recovery should be identifiable at an early stage and guide an individualized follow-up with targeted measures, among other things. physical activity. This project can lead to patients who are operated for esophageal cancer receiving the support and help they need to optimize their quality of life and adaptation to post-operative life.

Esophageal cancer has a worse prognosis than most tumor diseases, and it often requires a very extensive surgery for cure and recovery after surgery is often long, cumbersome and incomplete. Weight loss and eating difficulties are central problems after the operation and therefore important to counteract. It is important to identify factors that have a negative effect on the patient's quality of life after surgery. Cancer is also a "family disease" and it is of great importance to examine the needs of relatives. The project is based on three nation-wide Swedish data collections as well as a data collection at a large center for esophageal cancer in London on patients undergoing surgery for esophageal cancer. We shall In a clinical trial test whether a physical exercise program can counter muscle loss. Data on several patient-reported measures such as quality of life, stress, anxiety, depression and weight are available from repeatedly after surgery. Furthermore, data on the patient, tumor, treatment, care time and survival are collected. The patient's relatives are invited to answer several questions in order to improve their situation as well. Through studies of high scientific quality about important issues for patients, we want to demonstrate ways to how the healthcare system can provide the opportunity for better recovery in patients undergoing surgery for esophageal cancer and support for their relatives. Factors that affect the recovery should be identifiable at an early stage and guide an individualized follow-up with targeted measures, among other things. physical activity. This project can lead to patients who are operated for esophageal cancer receiving the support and help they need to optimize their quality of life and adaptation to post-operative life.

Esophageal cancer has a worse prognosis than most tumor diseases and a very extensive surgery is required for chance of cure. Patients often suffer from severe symptoms and a number of other problems long after surgery. It is of great importance to identify factors that have a negative effect on the patient's quality of life after surgery. The knowledge is very poor about what effects the diagnosis and surgery have on psychological aspects such as stress, anxiety and depression. The project is based partly on a nation-wide clinical study in Sweden and an ongoing clinical data collection at a high-volume hospital in London on patients undergoing surgery for esophageal cancer. Data on quality of life, stress, anxiety and depression as well as weight development measured at most repeated occasions after surgery will be available. In addition, detailed information on the patient, tumor, treatment, care time and survival is collected. Through studies of high scientific quality, we want to demonstrate ways to how the health care system can provide the opportunity for a better life in patients undergoing surgery for esophageal cancer. Factors that affect the recovery can be identified at an early stage and guide an individualized follow-up. This project can lead to patients who are operated for this devastating cancer disease in the future more than today receive the support and the help they need to improve their quality of life and adaptation to life after surgery.