Replication Data for: Personalized Care for patients after gastro-intestinal surgery in community practice

The care for individuals with cancer has reached a pivotal point. To maintain the quality, manageability, and affordability of care, there is an increasing focus on Appropriate Care, as recently outlined in the Framework for Appropriate Care by the Netherlands National Health Care Institute. This also applies to the growing and aging population of individuals with gastrointestinal (GI) cancer. Post-surgery, these patients are returning home to recuperate more quickly than before, thereby increasing the importance of effective recovery care. With a robust consortium of three hospitals, a patient organization, two oncological collaborations, three professional associations of paramedics, and two universities of applied sciences, we aim to investigate, through the research project PREFERENCE, how to optimally support these individuals in their physical recovery, quality of life, and participation. This initiative focuses on the elements of Appropriate Care. Currently, physiotherapists, exercise therapists, and dietitians lack knowledge on how to best provide support in primary care, close to the patient, and how to facilitate the best interaction between the patient and healthcare professionals. Encouraging patient autonomy is crucial in this regard. However, both caregivers and patients with GI cancer notice that the current recovery care does not sufficiently meet the patients' needs. Loved ones are also not adequately involved at present. These practical concerns lead to the research question:
What does optimal, personalized primary care look like for patients after surgical removal of GI cancer to enhance physical recovery, participation, and quality of life?
In four sub-studies, we will gather knowledge about existing needs among patients and caregivers, identify current solutions that meet these needs, and develop, test, and evaluate a set of new solutions designed to stimulate collaboration among all stakeholders and optimally structure appropriate (recovery) care for patients with GI cancer and their loved ones.