Health-related quality of life in colorectal cancer survivors: are there differences between sporadic and hereditary patients?

Allison M Burton-Chase,Christopher I Amos,Kirsten M Donato,Miguel A Rodriguez-Bigas,Y Nancy You,Susan K Peterson,Shannon Mccormick,Wendy M Parker,Patrick M Lynch,Ellen R Gritz,Karen H Lu

doi:10.1186/s41687-018-0047-4

Abstract

PurposeTo compare health-related quality of life (HRQoL) in colorectal cancer (CRC) survivors with sporadic CRC to those with hereditary cancer, specifically Lynch syndrome (LS).MethodsParticipants completed a mailed self-administered questionnaire that assessed, among other things, demographics, clinical characteristics, and health-related quality of life. Using a case-case design, CRC survivors with LS or sporadic cancer were matched on age, sex, race/ethnicity, cancer stage, geography, and time since diagnosis. Participants were recruited from patient registries at The University of Texas MD Anderson Cancer Center (MD Anderson) (n = 33 LS; n = 75 sporadic) and through social media (n = 42 LS). The final sample included 71 LS and 74 sporadic CRC survivors.ResultsFor LS patients, the mean FACT-C HRQoL score was 84.8 (11.9) [Median = 86.0; Interquartile Range-17] compared to sporadic patients mean score of 85.8 (16.7) [Median = 92.0; Interquartile Range-21], which indicates high quality of life for both groups. LS patients and sporadic CRC patients had similar HRQoL mean scores across 7 different HRQoL metrics, with no significant differences between groups. Exploratory regression analyses indicate some differences in known predictors of HRQoL by group despite no bivariate differences.ConclusionsHRQoL is an important component of survivorship in CRC patients. Given the clinical distinctions between LS and sporadic patients, we expected to find significant differences between these patients. However, the patients’ experiences/quality of life does not appear to illustrate such a clear dissimilarity within CRC survivors. Given the limited data in this area, larger studies, ideally with data obtained from multiple sites, is needed to better investigate the alignment between clinical determination and patient experience as well as to explore the relationship between HRQOL, treatment regimens, and health outcomes.

Highlights

Health-related quality of life (HRQoL) is considered an important factor to assess in all colorectal cancer survivors (CRC), because it has been shown to have an impact on screening and surveillance decisions [1]
Patients with higher perceived cancer risk and those with positive genetic test results are more likely to follow screening and surveillance recommendations [20, 21]. These findings indicate both that health-related quality of life (HRQoL) is an important factor in genetic testing for Lynch syndrome (LS) and that, combined with patient’s having accurate knowledge about their cancer risks, HRQoL has an impact on uptake of appropriate screening and surveillance
As expected, due to the recruitment method, there are no significant differences between LS and sporadic CRC survivors on demographics [Table 1]

Summary

Introduction

Health-related quality of life (HRQoL) is considered an important factor to assess in all colorectal cancer survivors (CRC), because it has been shown to have an impact on screening and surveillance decisions [1]. We compared HRQoL in CRC survivors with Lynch syndrome (LS) to those with sporadic cancer, given that there are significant differences in screening and surveillance recommendations and cancer risks for these two survivor populations. Compared with the general population, individuals with LS have higher lifetime risks for several cancers; CRC risk ranges from 20 to 69% for men and 10–52% for women, with risks varying based on the mutated gene [7,8,9,10,11]. In some cases prophylactic surgery is recommended [6, 12, 15, 16]

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Discussion

Conclusion