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. 2024 May;35(5):771-785.
doi: 10.1007/s10552-023-01838-0. Epub 2024 Jan 4.

Lymphedema self-assessment among endometrial cancer survivors

Jordyn A Brown  1 , Andrew F Olshan  1   2 , Victoria L Bae-Jump  2   3 , Adeyemi A Ogunleye  4 , Shawn Smith  5 , Stephenie Black-Grant  5 , Hazel B Nichols  6   7
Affiliations

Lymphedema self-assessment among endometrial cancer survivors

Jordyn A Brown et al. Cancer Causes Control. 2024 May.

Abstract

Purpose: Lower extremity lymphedema (LEL), which causes ankle, leg, and feet swelling, poses a significant challenge for endometrial cancer survivors, impacting physical functioning and psychological well-being. Inconsistent LEL diagnostic methods result in wide-ranging LEL incidence estimates.

Methods: We calculated the cumulative incidence of LEL based on survivor-reported Gynecologic Cancer Lymphedema Questionnaire (GCLQ) responses in addition to survivor- and nurse-reported leg circumference measurements among a pilot sample of 50 endometrial cancer survivors (27 White, 23 Black) enrolled in the ongoing population-based Carolina Endometrial Cancer Study.

Results: Self-leg circumference measurements were perceived to be difficult and were completed by only 17 survivors. Diagnostic accuracy testing measures (sensitivity, specificity, positive and negative predictive value) compared the standard nurse-measured ≥ 10% difference in leg circumference measurements to GCLQ responses. At a mean of ~11 months post-diagnosis, 54% of survivors met established criteria for LEL based on ≥ 4 GCLQ cutpoint while 24% had LEL based on nurse-measurement. Percent agreement, sensitivity, and specificity approximated 60% at a threshold of ≥ 5 GCLQ symptoms. However, Cohen's kappa, a measure of reliability that corrects for agreement by chance, was highest at ≥ 4 GCLQ symptoms (κ = 0.27).

Conclusion: Our findings emphasize the need for high quality measurements of LEL that are feasible for epidemiologic study designs among endometrial cancer survivors. Future studies should use patient-reported survey measures to assess lymphedema burden and quality of life outcomes among endometrial cancer survivors.

Keywords: Cancer survivorship; Endometrial neoplasm; Lymphedema; Uterine neoplasm.

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Conflict of interest statement

Competing interests The authors report no potential or actual competing interests.

Figures

Fig. 1
Fig. 1
Flow chart of study sample selection including endometrial cancer survivor recruitment, exclusion criteria, and refusals into Carolina Endometrial Cancer Study home visit pilot
Fig. 2
Fig. 2
Leg circumference measurement worksheet used by pilot participants and nurse-interviewer
Fig. 3
Fig. 3
Survivor feedback about the level of difficulty among survivors who submitted self-measured lower extremity leg circumference measurements
See this image and copyright information in PMC

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