Development and validation of the Lymphedema Symptom and Intensity Survey-Arm

Abstract

Purpose: 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. Methods: 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. Results: 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, rs = 0.08; distress, rs = −0.12). Convergent validity was acceptable as tested with multiple instruments (e.g., Functional Assessment of Cancer Therapy-Breast +4, overall intensity rs = −0.44, overall distress rs = −.48) Conclusions: The 30-item LSIDS-A is a valid and reliable instrument that can be used to assess arm lymphedema and its associated symptoms.