Background: Quality of life (QOL), not just survival, is central to outcomes analysis in musculoskeletal oncology. However, little information exists about the patients' definition of what constitutes QOL.
Methods: Self-administered outcomes questionnaires were given to 201 surgically treated patients with lower extremity tumors. Of these patients, 192 (137 with malignant tumors, 55 with benign tumors) provided a written definition of QOL. Their responses were independently collated and matched with clinical information.
Results: For most patients (153, or 80%) the definition of QOL encompassed several attributes. A consistent combination of four major attributes was used in the QOL definition by 44 (32%) of the malignant cases and 19 (35%) of the benign cases. Differences in responses between men and women were idiosyncratic and more common in the benign group. Good family relations and good health were equally important to men and women. Responses varied by patient age. Older patients valued self-sufficiency and freedom from pain, whereas younger patients emphasized happiness, trust in God or church, achieving goals and being successful, and love. Those whose surgery was 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 adequately addressed by current outcomes-measures in orthopedics and general oncology.