Development of a Patient-reported Outcome Measure for Adults with Lower Extremity Malignancies: The LIMB-Q ONC.
4 affiliations
- 1From the Department of Plastic and Reconstructive Surgery, Johns Hopkins University School of Medicine, Baltimore, MD.
- 2Department of Orthopaedic Surgery, Ohio State University Wexner School of Medicine, Columbus, OH.
- 3Department of Plastic Surgery, Ohio State University Wexner School of Medicine, Columbus, OH.
- 4Department of Pediatrics, McMaster University, Hamilton, ON, Canada.
Abstract
Background
Sarcomas are rare but aggressive cancers, and their treatment can have profound effects on quality of life. We sought to develop and establish the content validity of the LIMB-Q ONC, a novel patient-reported outcome measure (PROM) for adults with lower extremity malignancies, designed to reliably capture the impact of these cancers on patients.Methods
Following international guidelines for the development of PROMs, we created a preliminary LIMB-Q ONC by adapting the LIMB-Q scales and incorporating 2 cancer-specific scales from the BREAST-Q. Content validity was evaluated through cognitive debriefing interviews with patients and feedback from subject experts. Comments were used to refine a final instrument.Results
We conducted 16 cognitive debriefing interviews with patients with soft-tissue sarcomas (n = 12), bone sarcomas (n = 3), and late effects of nonsarcoma cancer treatment (n = 1). Treatments included chemotherapy (75%), radiation therapy (69%), amputation (63%), and/or flap (50%) surgery. Revisions included replacing "injured lower limb" with "affected lower limb" and "uninjured lower limb" with "lower limb unaffected by cancer." Minor wording changes improved clarity, whereas no scales were added or removed. Content experts confirmed the instrument's comprehensiveness and relevance.Conclusions
Content validity of the LIMB-Q ONC was established through qualitative patient interviews and expert review. The LIMB-Q ONC offers a valid tool for measuring the outcomes important to patients with primary lower extremity malignancies. This article demonstrates the content validity of the LIMB-Q ONC in this patient population and allows for future field testing of the PROM.
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BibTeX
@article{heron2026development,
title = {{Development of a Patient-reported Outcome Measure for Adults with Lower Extremity Malignancies: The LIMB-Q ONC.}},
author = {Matthew J Heron and Carolyn Drogt and Lily Zhu and Kimberly H Khoo and John Alexander and Jason Souza and Anne F Klassen and Lily R Mundy},
journal = {Plastic and reconstructive surgery. Global open},
year = {2026},
month = oct,
doi = {10.1097/gox.0000000000008223},
url = {https://europepmc.org/article/MED/42910126},
note = {CC BY-NC-ND},
}
RIS
TY - JOUR
TI - Development of a Patient-reported Outcome Measure for Adults with Lower Extremity Malignancies: The LIMB-Q ONC.
AU - Matthew J Heron
AU - Carolyn Drogt
AU - Lily Zhu
AU - Kimberly H Khoo
AU - John Alexander
AU - Jason Souza
AU - Anne F Klassen
AU - Lily R Mundy
PY - 2026
DA - 2026/10/21
JO - Plastic and reconstructive surgery. Global open
DO - 10.1097/gox.0000000000008223
UR - https://europepmc.org/article/MED/42910126
AB - Background Sarcomas are rare but aggressive cancers, and their treatment can have profound effects on quality of life. We sought to develop and establish the content validity of the LIMB-Q ONC, a novel patient-reported outcome measure (PROM) for adults with lower extremity malignancies, designed to reliably capture the impact of these cancers on patients.Methods Following international guidelines for the development of PROMs, we created a preliminary LIMB-Q ONC by adapting the LIMB-Q scales and incorporating 2 cancer-specific scales from the BREAST-Q. Content validity was evaluated through cognitive debriefing interviews with patients and feedback from subject experts. Comments were used to refine a final instrument.Results We conducted 16 cognitive debriefing interviews with patients with soft-tissue sarcomas (n = 12), bone sarcomas (n = 3), and late effects of nonsarcoma cancer treatment (n = 1). Treatments included chemotherapy (75%), radiation therapy (69%), amputation (63%), and/or flap (50%) surgery. Revisions included replacing "injured lower limb" with "affected lower limb" and "uninjured lower limb" with "lower limb unaffected by cancer." Minor wording changes improved clarity, whereas no scales were added or removed. Content experts confirmed the instrument's comprehensiveness and relevance.Conclusions Content validity of the LIMB-Q ONC was established through qualitative patient interviews and expert review. The LIMB-Q ONC offers a valid tool for measuring the outcomes important to patients with primary lower extremity malignancies. This article demonstrates the content validity of the LIMB-Q ONC in this patient population and allows for future field testing of the PROM.
SN - 2169-7574
ER -