Changes in perception of prognosis in the last year of life of patients with advanced cancer and its associated factors: Longitudinal results of the eQuiPe study.

Abstract

AIM

To investigate changes in the perception of prognosis in the last year of life of patients with advanced cancer and its associated factors.

DESIGN

Prospective, longitudinal, multicentre, observational study in patients with advanced cancer (eQuiPe). Patients completed 3-monthly follow-up questionnaires until death.

SETTING/PARTICIPANTS

Adult patients diagnosed with advanced cancer were recruited by their treating physician or self-enrolled in one of the forty Dutch hospitals. Only deceased patients with available prognostic data were included for analysis (n = 801).

BACKGROUND

Many patients with advanced cancer are unaware of their limited prognosis, however little is known about the change in awareness during the last year of their lives.

RESULTS

Perception of prognosis changes in the last year of life with an increase in the percentage of patients who are aware of their limited prognosis (from 15% to 40%). Especially in the last 6 months of life, most of the changes were towards a more realistic perception of prognosis. Patients who did not want to know their prognosis remained relatively stable in their wish not to know (range: 14%-18%). Time to death was associated with having a perception of prognosis of < 1 year, >1 year or not knowing the prognosis, but was not associated with not wanting to know the prognosis.

CONCLUSION

Becoming aware of their limited prognosis may make patients with advanced cancer more receptive to start end-of-life discussions. Although some patients prefer not to know their prognosis, it remains important to respectfully explore their preferences and wishes for end-of-life care.