Validation of the European Oncology toolkit for the self-assessment of Quality of Life (EUonQoL-Kit) in cancer patients and survivors: study protocol of a pan European survey.

Background: European cancer programmes and policies lack a unified health-related quality of life (HRQoL) assessment tool. The European oncology quality of life toolkit (EUonQoL-Kit) is a novel set of HRQoL questionnaires, co-designed with cancer patients and survivors, translated and culturally adapted into 31 European languages, and with both static and dynamic electronic administration modes. The main aim of this study is the psychometric assessment of the static version.

Collaborating with cancer patients and informal caregivers in a European study on quality of life: protocol to embed patient and public involvement within the EUonQoL project.

Background: Patient and public involvement (PPI) has become an essential part of health research. There is a need for genuine involvement in order to ensure that research is relevant to patients. This can then improve the quality, relevance, and impact of health research, while at the same time reducing wasted research and in doing so bringing science and society closer together.

Patient and public involvement in the development of the digital tool MyBoT to support communication between young people with a chronic condition and care providers.

Introduction: To guide good practices in patient and public involvement (PPI), several calls have been made to share detailed accounts of practical experiences. We describe our collaboration with young people with a chronic condition (YPCC) in the development, testing and implementation of the digital communication tool MyBoT (Map your Burden of Treatment).

Methods: MyBoT was developed by a team of academic researchers, some of whom were practising care providers, YPCC and designers.

Let Us Talk Treatment: Using a Digital Body Map Tool to Examine Treatment Burden and Coping Strategies Among Young People with a Chronic Condition.

Purpose: Treatment for a chronic condition can pose a heavy burden on young people and affect their quality of life. The present study examined young people's experiences with treatment burden and their coping strategies.

Patients And Methods: The body mapping method was employed, in which a life-sized outline of someone's body is traced and populated with visual representations, symbols and words.

Routine healthcare disruptions: a longitudinal study on changes in self-management behavior during the COVID-19 pandemic.

Background: The outbreak of COVID-19 had a significant impact on routines and continuity of professional care. As frequent users of this professional care, especially for people with chronic diseases this had consequences. Due to barriers in access to healthcare, an even greater appeal was made on the self-management behaviors of this group.