"Still a Cancer Patient"-Associations of Cancer Identity With Patient-Reported Outcomes and Health Care Use Among Cancer Survivors.

Sylke R Zeissig,Bernd Holleczek,Hermann Brenner,Heike Bertram,Eva-Maria Wolschon,Volker Arndt,Andrea Eberle,Melissa S Y Thong,Mechthild Waldeyer-Sauerland,Ron Pritzkuleit,Hiltraud Kajüter,Lena Koch-Gallenkamp,Annika Waldmann

doi:10.1093/jncics/pky031

Abstract

BackgroundThe concept of cancer identity is gaining attention as more individuals are living with cancer as a chronic illness. Research is limited, and results suggest that a self-identity as “cancer patient” rather than a “cancer survivor” is associated with depression and lower health-related quality of life (HRQL). We aimed to identify factors associated with patient identity and investigate the associations between patient identity and treatment, health care use, psychosocial distress, and HRQL.MethodsWe used data from the population-based CAncEr Survivorship: A multi-Regional (CAESAR) study. Breast, colorectal, and prostate cancer survivors diagnosed during 1994–2004 completed a postal survey on patient identity, HRQL, psychological distress, and health care use in 2009–2011. We calculated odds ratios and the 95% confidence interval of having a patient identity. Analyses were adjusted for age, sex, education, and cancer stage, where appropriate.ResultsOf the 6057 respondents, colorectal cancer survivors (25%) were least likely to consider themselves patients, and prostate cancer survivors (36%) the most likely. Being male, younger age, comorbidity, higher cancer stage, and disease recurrence were associated with patient identity. Treatment was associated with patient identity, except among female colorectal cancer survivors. Having a patient identity was associated with higher health care use within the past 12 months. Survivors who still consider themselves patients were more likely to be depressed and reported significantly lower HRQL.ConclusionsA significant proportion of cancer survivors still consider themselves patients five to 15 years postdiagnosis. Sensitivity to individuals’ self-identity should be considered when exploring their cancer experience.

Highlights

The concept of cancer identity is gaining attention as more individuals are living with cancer as a chronic illness
In this population-based study of 5 to 15 years–postdiagnosis cancer survivors, we aimed to investigate the proportion of survivors who still consider themselves patients and identify factors associated with cancer identity
When compared with colorectal cancer survivors, prostate cancer survivors were more likely to perceive themselves as patients

Summary

Introduction

The concept of cancer identity is gaining attention as more individuals are living with cancer as a chronic illness. Results suggest that a self-identity as “cancer patient” rather than a “cancer survivor” is associated with depression and lower health-related quality of life (HRQL). Colorectal, and prostate cancer survivors diagnosed during 1994–2004 completed a postal survey on patient identity, HRQL, psychological distress, and health care use in 2009–2011. Results: Of the 6057 respondents, colorectal cancer survivors (25%) were least likely to consider themselves patients, and prostate cancer survivors (36%) the most likely. Younger age, comorbidity, higher cancer stage, and disease recurrence were associated with patient identity. Treatment was associated with patient identity, except among female colorectal cancer survivors. Having a patient identity was associated with higher health care use within the past 12 months. Survivors who still consider themselves patients were more likely to be depressed and reported significantly lower HRQL. Sensitivity to individuals’ self-identity should be considered when exploring their cancer experience

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