Development and validation of the Lymphedema Symptom and Intensity Survey-Arm
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The purpose of this instrument development project was to create a self-report tool to evaluate arm lymphedema and associated symptoms in breast cancer survivors.
The Lymphedema Symptom Intensity and Distress Survey-Arm (LSIDS-A) was developed and tested in three phases: phase 1—literature review and expert panel; phase 2—preliminary validation; and phase 3—final validation.
Phase 1: The most common symptoms experienced by breast cancer survivors with lymphedema were identified. A 52-item scale was developed. Phase 2: 128 community-dwelling breast cancer survivors (64 with lymphedema, 64 without lymphedema) completed the LSIDS-A. Feedback from the participants was that the format was “clear” and “made sense”; therefore, the response structure was left intact. Sixteen items were deleted leaving a 36-item revised instrument. Phase 3: Subsequent testing in a total sample of 236 breast cancer survivors with lymphedema was undertaken. The Cronbach’s alpha reliability values for the overall intensity and distress scores were 0.93 and 0.94, respectively. The Kuder-Richardson values ranged from 0.66 to 0.92. Divergent validity evaluated against Marlowe-Crowne Social Desirebility Scale overall was acceptable (intensity, r s = 0.08; distress, r s = −0.12). Convergent validity was acceptable as tested with multiple instruments (e.g., Functional Assessment of Cancer Therapy-Breast +4, overall intensity r s = −0.44, overall distress r s = −.48)
The 30-item LSIDS-A is a valid and reliable instrument that can be used to assess arm lymphedema and its associated symptoms.
KeywordsLymphedema Instrument development Symptoms Distress Intensity Survey Breast cancer
Development of the LSIDS-A was supported by the following: (1) a grant from the American Cancer Society MRSG-07-012-01-CPPB; (2) a grant from the Oncology Nursing Society Foundation; (3) a grant from the National Center for Research Resources National Institutes of Health UL 1RR024975; (4) a National Research Service Award #1 F31 NR07854-02; (5) a Sigma Theta Tau Iota Chapter grant; (6) a Vanderbilt University Dissertation Enhancement Award; (7) a Vanderbilt School of Nursing Postdoctoral Award; (8) Tactile Systems Technology, Incorporated, 1331 Tyler Street NE, Suite 200, Minneapolis, MN 55413; and (9) The Martha Rivers Ingram Chair in Nursing at Vanderbilt University.
Conflict of interest
The authors have no other conflicts to disclose.
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