“Still cancer patient” self-identity is associated with healthcare use among cancer survivors: a population-based study

Purpose:

As more individuals are now living with cancer as a chronic illness, the concept of cancer identity is gaining attention. Limited research suggest that a self-identity as “cancer patient” rather than “cancer survivor” has been associated with depression and lower health-related quality of life, but hardly any research has explored this association with healthcare use. We aimed to investigate the association between cancer identity and healthcare use.

Methods:

We used data from the population-based CAncEr Survivorship: A multi-Regional (CAESAR+) study, conducted in collaboration with the German Cancer Research Center and six German population-based cancer registries. Survivors of breast, colorectal, and prostate cancers diagnosed in 1994 – 2004 completed a postal survey on self-identity, disease progression and healthcare use in 2009 – 2011. We calculated odds ratios (OR) and the 95% confidence interval (CI) of having a patient self-identity. Analyses were adjusted for age, sex, education and cancer stage, where appropriate.

Results:

Of the 6767 respondents, 16% reported disease progression post-diagnosis. Of these, 62% had a patient self-identity although this perception reduced with time since disease progression. Still receiving cancer treatment or aftercare was associated with patient self-identity (ORadj: 14.2, 95%CI: 12.5 – 16.2). Cancer-related healthcare use in past 12 months such as visits to the general practitioner (ORadj: 2.3, 95%CI: 2.1 – 2.6) or medical specialists (ORadj: 3.0, 95%CI: 2.7 – 3.5), and hospital visits (acute care: ORadj: 3.5, 95%CI: 2.7 – 4.5; University hospital: ORadj: 3.3, 95%CI: 2.1 – 5.1; rehabilitation hospital: ORadj: 2.2, 95%CI: 1.6 – 3.2) were associated with patient self-identity.

Conclusions:

A significant proportion of cancer survivors still consider themselves as patients many years after diagnosis and this self-identity is associated with healthcare use. Individuals' self-identity should be considered when exploring their cancer experience.