Informationsbedürfnisse von Patient*innen mit fortgeschrittenem Lungen-, Ösophagus- und Leberkarzinom - Ergebnisse eines Realist Reviews im Projekt Onco:cide

Background: The decision-making ability of people with cancer can be compromised by several factors. A variety of interventions have been developed to improve decision-making. Professionals perceive them as conflicting with existing practice, resource intensive and therefore the degree of implementation is low. The project aims to optimize the existing informed consent process with a low-threshold, multimodal intervention. A realist review was conducted to provide a theoretical basis. One research question focuses on the information needs of patients throughout the disease trajectory. Methods: We searched Medline, Cinahl, PsycInfo, Web of Science and Scopus from 2005 to October 2022. We included studies focusing on the information needs of patients with lung, esophageal and liver cancer regardless of the study design or setting. Two researchers independently screened and extracted the data. We analyzed the data with respect to the different information needs at different stages of the disease process (diagnosis, treatment, post-treatment, end of life) as well as cancer progression. Result: Database search yielded 1022 articles. After title and abstract screening 111 remained and 60 studies were included in the analysis after screening full texts. Most studies (n=30) focused on the diagnosis and treatment phase and only a minority on the end-of-life phase (n=5). Important information needs are prognosis, treatment options, cancer symptoms, side effects, coping and selfcare. The need for information on treatment options decreases over the disease trajectory with a greater focus on coping and self-care in the post-treatment phase. Discussion: Patients need varying information over the course of their disease. Due to heterogeneous reporting, it was difficult to differentiate the information needs in relation to cancer progression or staging. Conclusion. More emphasis should be placed on coping and self-care at an early stage, e.g. to build resilience, as it can be challenging for cancer patients to anticipate their needs when they are preoccupied with treatment decisions