Hospital of the University of Pennsylvania, Philadelphia, PA
C. E. Hill-Kayser , C. Vachani , M. K. Hampshire , G. A. Di Lullo , J. M. Metz
Background: Breast cancer survivors may be at risk for significant late effects after treatment. Understanding the patterns of change over time of patient reported outcomes (PRO) is often very challenging. Methods: Patient-reported data was gathered via a convenience sample frame from breast cancer survivors utilizing a publically available, free, Internet-based tool for creation of survivorship care plans. Available at www.livestrongcareplan.com and through the OncoLink website, the tool allows survivors to enter data regarding diagnosis, demographics, treatments received, and late effects experienced, and provides them with customized guidelines for future care. All data has been maintained anonymously with IRB approval. Results: 1,145 breast cancer survivors were queried with regard to PRO. Median age at diagnosis (dx) was 49 yrs, and median current age 52 yrs. Of users, 98% reported having had surgery; of these 56% underwent mastectomy and 49% lumpectomy (5% both). Similarly, 59% underwent sentinel LN biopsy, and 47% axilary dissection. Of the same cohort, 88% received chemotherapy and/or hormonal treatment, and 70% radiation therapy. The median time from dx until use of the care plan tool was 2 years (range 0-33 years). Late effects reported by survivors ≤ 2 and > 2 years from diagnosis are shown (see table). Overall, survivors ≤ 2 years from dx were more likely to note changes in skin color or texture; those > 2 years from diagnosis were more likely to note osteopenia, lymphedema, and sexual changes. Patient reported cognitive changes, arm pain/numbness/tingling, and loss of shoulder flexibility did not differ between the two groups. Conclusions: This anonymous tool uses a convenience sample frame to gather PRO after breast cancer diagnosis/ treatment. PRO varied significantly with time since dx, with more late effects reported > 2 years from dx. This information may be of use during patient counseling and survivorship care delivery.
PRO | Early (≤ 2 years from Dx) n = 715 |
Late (> 2 years from Dx) n = 430 |
p value |
---|---|---|---|
Osteoporosis/penia | 21% | 43% | < 0.001 |
Cognitive changes | 64% | 63% | 0.98 |
Lymphedema | 30% | 34% | < 0.001 |
Arm pain/numbness/tingling | 56% | 60% | 0.2 |
Skin color/ texture change | 60% | 49% | 0.001 |
Loss of shoulder flexibility | 31% | 36% | 0.3 |
Sexual changes | 45% | 62% | < 0.001 |
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