Defining patients living long-term with incurable cancer: A modified hybrid Delphi study

Abstract

Background: Therapeutic advances have significantly extended survival for certain groups of patients with incurable cancer, creating a growing population living long-term with incurable cancer. However, the absence of standardized definitions and terminology has contributed to limited recognition of this distinct group and their specific care needs. Aim: To achieve consensus on definitions and terminology for patients living long-term with incurable cancer by incorporating perspectives of patients, informal caregivers, healthcare professionals, and other relevant stakeholders. Design: A modified hybrid Delphi study, comprising focus groups and a three-round Delphi consensus process. Setting/participants: Three focus groups were conducted with patients (n = 11), informal caregivers (n = 4), and healthcare professionals (n = 6). The multidisciplinary expert group comprised medical specialists (n = 5), epidemiologists (n = 3), and patient advocates (n = 2). The Delphi study involved 78 panelists (73 unique respondents) divided into three subpanels: patients and informal caregivers (n = 22), healthcare professionals (n = 36), and other stakeholders (n = 20). All participants were from the Netherlands. Results: We achieved 88% consensus on the terminology: Patients living long-term with incurable cancer. Consensus was reached on the definition (94%) for patients living for two or more years with: (1) incurable metastatic cancer, (2) incurable hematological malignancies, (3) incurable locally advanced cancer, or (4) patients with exceptionally long survival for their cancer type, despite not meeting the 2-year criterion. Conclusions: This modified hybrid Delphi study established the first consensus-based framework for patients living long-term with incurable cancer, providing essential groundwork for improved recognition and tailored care approaches for this population.