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

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.

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.

A modified hybrid Delphi study, comprising focus groups and a three-round Delphi consensus process.

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.

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.

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.