Financial burden and quality of life among early-onset colorectal cancer survivors: A qualitative analysis

Erica Blum-Barnett, Sarah Madrid, Andrea Burnett-Hartman, Shane R Mueller, Carmit K McMullen, Andrea Dwyer, Heather S Feigelson, Erica Blum-Barnett, Sarah Madrid, Andrea Burnett-Hartman, Shane R Mueller, Carmit K McMullen, Andrea Dwyer, Heather S Feigelson

Abstract

Background: Colorectal cancer (CRC) diagnosed at ages <50 years old (early-onset CRC) has been increasing in the United States, resulting in a growing number of early-onset CRC survivors who may face significant financial and quality of life (QOL) challenges.

Objective: Identify themes from a patient advocate discussion about the impact of CRC on financial burden and QOL among early-onset CRC survivors.

Methods: We conducted a semi-structured, stakeholder discussion among 14 early-onset CRC survivors and one caregiver who were members of an advocacy group. The discussion focused on the financial and overall QOL impacts of CRC. The meeting was recorded, transcribed and coded in ATLAS.ti, using a thematic analysis approach.

Results: Cancer stage at diagnosis among advocates with CRC ranged from 2 to 4; about half of the attendees had no evidence of disease, and about half were undergoing treatment. Employment (career trajectory, lost wages, health insurance/benefits, performance) emerged as the dominant theme of the financial impacts discussion. Lifestyle impacts of disease and survivorship included both emotional and physical side-effects. Diagnosis experience, missing information about CRC treatment and side-effects, financial stress and strain on relationships were the primary themes for the overall QOL impacts.

Conclusion: Given the growing incidence of CRC in those under 50, it is particularly important for providers to be aware of these patients' financial, emotional and QOL needs, and to develop care plans that specifically address these areas of concern for early-onset CRC survivors.

Keywords: early-onset colorectal cancer; financial burden; qualitative; quality of life; survivorship.

Conflict of interest statement

The authors declare that they have no conflict of interest.

© 2019 The Authors Health Expectations published by John Wiley & Sons Ltd.

Figures

Figure 1
Figure 1
Discussion guide
Figure 2
Figure 2
Themes identified during the qualitative analysis of meeting transcript

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