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Supportive Care in Cancer

, Volume 23, Issue 10, pp 3103–3112 | Cite as

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

  • Sheila H. RidnerEmail author
  • Mary S. Dietrich
Original Article

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, 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)

Conclusions

The 30-item LSIDS-A is a valid and reliable instrument that can be used to assess arm lymphedema and its associated symptoms.

Keywords

Lymphedema Instrument development Symptoms Distress Intensity Survey Breast cancer 

Notes

Funding

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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Copyright information

© Springer-Verlag Berlin Heidelberg 2015

Authors and Affiliations

  1. 1.Vanderbilt University School of NursingNashvilleUSA

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