Table 1

Definitional framework

The disease
Disease phases
 Chronic disease/chronic cancerAccording to the National Institute for Public Health and the Environment (In Dutch: RIVM), a chronic disease is a disease with irreversible prospects and with a relatively long disease course. Chronic diseases are different from other diseases in that these patients are care-dependent for a very long time.40 Cancer is also categorised as a chronic disease.
In medical oncology, there is a major debate as to whether cancer should be viewed as a chronic disease or not, while healthcare professionals do not want to provide unrealistic prognoses. This also holds for patients with protracted incurable cancer.
 Protracted incurable cancerWe define protracted incurable cancer as a disease phase where patients receive cancer treatment such as immune therapy, hormonal treatment or chemotherapy, and whereby the disease can be considered stable or in remission for long periods of time.
During this period, the patient’s physical condition may sometimes go up and down due to treatment side-effects. In other words, although the response to treatment/the patient’s condition can be considered stable or in remission for long periods, briefer periods of progression also occur.
The patient
States associated with living with cancer
  OptimismOptimism is all about anticipating a positive future. To be optimistic means that we expect things to go our way.41 Optimists are aware that positive outcomes are dependent on their own efforts.
It should however be noted that optimism is partly inherited, and certain patients are more easily able to choose to be optimistic (eg, deliberate optimism).
 HopeAs opposed to optimism, hope generally focuses on a specific goal, such as hope for a longer life.42 It contrasts with hopelessness/powerlessness, and is much more about how you feel. It is also argued that emotions go beyond the mere ‘feeling’ of that emotion; emotions are a way in which we interact with the world, and accordingly, hope is sometimes defined as an emotional attitude.25
  FearResearch about cancer patients’ fear is extensive. In the context of protracted incurable cancer, fear of cancer recurrence is commonly studied.43 It is often characterised by chronic worry, excessive body checks and difficulties with making future plans.
 UncertaintyThere has also been a great deal of research on uncertainty.21 In essence, uncertainty involves the inability to attribute meaning to events.
  • Our aim wasnot to explore a specific concept but to conceptualise some definitions of terms that often came up during conversations  .