Background: Quality of life (QOL), not just survival, is central to ou
tcomes analysis in musculoskeletal oncology. However, little informati
on exists about the patients' definition of what constitutes QOL. Meth
ods: Self-administered outcomes questionnaires were given to 201 surgi
cally treated patients with lower extremity tumors. Of these patients,
192 (137 with malignant tumors, 55 with benign tumors) provided a wri
tten definition of QOL. Their responses were independently collated an
d matched with clinical information. Results: For most patients (153,
or 80%) the definition of QOL encompassed several attributes. A consis
tent combination of four major attributes was used in the QOL definiti
on by 44 (32%) of the malignant cases and 19 (35%) of the benign cases
. Differences in responses between men and women were idiosyncratic an
d more common in the benign group. Good family relations and good heal
th were equally important to men and women. Responses varied by patien
t age. Older patients valued self-sufficiency and freedom from pain, w
hereas younger patients emphasized happiness, trust in God or church,
achieving goals and being successful, and love. Those whose surgery wa
s less extensive cited good family relations, the ability to function
physically and emotionally, and having a good job or work. Conclusion:
The variation in patients' perspectives and definitions of quality of
life must be taken into account when assessing QOL in musculoskeletal
oncology patients. Patients often emphasize concerns that are not ade
quately addressed by current outcomes measures in orthopedics and gene
ral oncology.