Advocating for a patient- and family centered care approach to management of short bowel syndrome.

Patient- and family centered care (PFCC) is a model of providing healthcare that incorporates the preferences, needs, and values of the patient and their family and is built on a solid partnership between the healthcare team and patient/family. This partnership is critical in short bowel syndrome (SBS) management since the condition is rare, chronic, involves a heterogenous population, and calls for a personalized approach to care. Institutions can facilitate the practice of PFCC by supporting a teamwork approach to care, which, in the case of SBS, ideally involves a comprehensive intestinal rehabilitation program consisting of qualified healthcare practitioners who are supported with the necessary resources and budget. Clinicians can engage in a range of processes to center patients and families in the management of SBS, including fostering whole-person care, building partnerships with patients and families, cultivating communication, and providing information effectively. Empowering patients to self-manage important aspects of their condition is an important component of PFCC and can enhance coping to chronic disease. Therapy nonadherence represents a breakdown in the PFCC approach to care, especially when nonadherence is sustained, and the healthcare provider is intentionally misled. An individualized approach to care that incorporates patient/family priorities should ultimately enhance therapy adherence. Lastly, patients/families should play a central role in determining meaningful outcomes as it relates to PFCC and shaping the research that affects them. This review highlights needs and priorities of patients with SBS and their families and suggests ways to address gaps in existing care to improve outcomes.