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Primary Health Concerns Perceived By Long-Term Disease-Free Colorectal Cancer Survivors: A Qualitative Analysis
Amanda Cuddy, George J. Chang, John M. Skibber, Miguel A. Rodriguez-Bigas, Brian K. Bednarski, Craig A. Messick, Sa Nguyen, Y. Nancy You*
Surgical Oncology, University of Texas MD Anderson Cancer Center, Houston, TX

Introduction
Among 14.5 million cancer survivors today, approximately 9% had survived from colorectal cancer (CRC). Despite increasing numbers, there is little research investigating the long-term needs of cancer survivors. The aim of this study is to document the primary health concern as perceived and expressed by long-term adult survivors of CRC.
Methods
A cross-sectional mail-out survey study was conducted to understand the cancer survivorship experience among long-term (> 5-year) survivors from CRC. A structured questionnaire included an open-ended item inquiring about the patient’s greatest health concern at the time of the survey. It was designed for self-report via free-text narrative entry. The questionnaire was pilot tested and found to be feasible for self-adminstration. Among 830 survivors who responded to the survey study, 650 were disease-free and provided an analyzable, free-text response. Systematic content analysis of verbatim responses was conducted; open-ended responses were coded to identify descriptive thematic categories of health concerns by two independent investigators. Themes were compared between survivors who had been diagnosed with CRC before age 50 (Younger, Y; n=231, 35.5%) vs. at or after age 50 (Older, O; n=419, 64.5%).
Results
The median time from CRC diagnosis was 10.1 years. Gender distribution was even (male: 359, 51.1%), and tumor site was rectum in 345 (53.1%) of the patients. Sixty-three (9.7%) of the survivors reported no current health concern. Among the remaining, 6 health concern themes were identified (Table): non-CRC medical condition (n=179, 30.5%), colorectal/second cancer (n=151, 25.7%), overall health (n=99, 16.9%), personal wellness (n=83, 14.1%), treatment sequelae (n=60, 10.2%), and non-self concerns (n=15, 2.6%). When compared to O, Y survivors were disproportionately more concerned about colorectal/second cancer (32.5 vs. 18.1%; p<0.001), and about personal wellness (16.5 vs. 10.7%, p=0.048); while the O survivors disproportionately reported more concerns surrounding overall health status (19.3 vs. 7.8%; p=0.001) and showed a trend toward more concerns about non-CRC medical problems (30.1 vs. 22.9%; p=0.054; Figure).
Conclusion
Even after extended survival, one-third of the long-term survivors still perceive colorectal/second cancers or cancer treatment sequelae as their main health concern, while others highlight increasing concerns for overall health, non-CRC medical problems and personal wellness issues. The divergent patient-reported primary concerns identified in different age groups underscores the need for a personalized approach to cancer survivor care.
Six Themes and Content Details of Patient-reported Primary Health Concern
Non-CRC medical conditionCR or secondary cancerOverall healthPersonal wellnessTreatment sequelaeNon-self concerns
• Diabetes
• Heart disease
• Hypertension
• Hypercholesterolemia
• Arthritis/Pain
• Kidney disease
• COPD
• Cancer recurrence
• Transmission of risk to offspring
• Second cancer
• Physical mobility
• Fatigue
• Independence
• Weight gain/ management
• Mental health
• Depression
• Bowel dysfunction
• Stoma
• Partial obstruction
• Sexual dysfunction
• Wound hernia
• Neuropathy
• Healthcare system
• Care of family members

(X-axis indicates % of survivors)


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