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 One--literature review and expert panel, Phase Two--preliminary validation, and Phase Three--final validation.
Results
Phase One: The most common symptoms experienced by breast cancer survivors with lymphedema were identified. A 52-item scale was developed. Phase Two: 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 Three: 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 Desireability 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.