Self-management of patients with advanced cancer: A systematic review of experiences and attitudes

SAGE Palliative Medicine & Chronic Care

This episode features Kim de Nooijer and Sophie van Dongen (Erasmus University Medical Center, Rotterdam, Netherlands). Self-management has predominantly been studied in the context of chronic diseases, where it has been defined as ‘the ability to manage the symptoms, treatment, physical and psychosocial consequences, and lifestyle changes inherent in living with the condition’. Patients with advanced cancer experience severe, multidimensional symptoms and challenges and are increasingly expected to actively manage their health and care. There still is a lack of insight into the full range of self-management experiences of patients with advanced cancer and the attitudes of relatives and healthcare professionals towards self-management of these patients. This study demonstrates that self-management strategies of patients with advanced cancer span many domains: medicine and pharmacology, lifestyle, psychology, social support, knowledge and information, navigation and coordination and medical decision-making. Patients’ self-management strategies and experiences are highly individual and divergent and may be substitutional, additional and distinctive or conflicting compared to care provided by healthcare professionals. Healthcare professionals perceive self-management as both desirable and achievable if based on sufficient skills and knowledge and solid patient–professional partnerships. Self-management support programmes for patients with advanced cancer can benefit from an individualised approach that re-evaluates patients’ needs and wishes, is embedded in solid partnerships with relatives and healthcare professionals, and is incorporated into existing models of care. Future studies on self-management of patients with advanced cancer need to further examine attitudes of relatives and healthcare professionals and investigate effectiveness and working mechanisms at the levels of patients, communities and healthcare organisations and policy.