Domains that Determine Quality of Life in Vascular Amputees

Abstract

Background: Although patients with critical limb ischemia (CLI) commonly undergo major limb amputation, the quality of life (QOL) of this group remains poorly described. Therefore, we sought to describe which domains vascular amputees consider important in determining their health-related QOL.

Methods: We performed 4 focus groups in patients who had major lower extremity amputations resulting from CLI. They were conducted at 4 distinct centers across the United States to ensure broad geographic, socioeconomic, and ethnic representation.

Results: Of 26 patients (mean age, 64 years), 19 (73%) were Caucasian, 6 (23%) were African American, and 1 (4%) was Native American. Nearly, three-quarter of patients were men (n = 19, 73%) and had a high-school education or more (n = 19, 73%). Overall, 8 (31%) were double amputees and 17 (65%) had diabetes. Time since amputation varied across patients and ranged from 3 months to more than 27 years (mean, 4.3 years). Patients stated that their current QOL was determined by impaired mobility (65%), pain (60%), progression of disease in the remaining limb (55%), and depression/frustration (54%). Across 26 patients, more than half (n = 16, 62%) described multiple prior revascularization procedures. Although most felt that their physician did his/her best to salvage the affected leg (85%), a sizable minority would have preferred an amputation earlier in their CLI treatment course (27%). Furthermore, when asked how their care might have been improved, patients reported that facilitating peer support (88%), more extensive rehabilitation and prosthetist involvement (71%), earlier mention of amputation as a possible outcome (54%), and the early discontinuation of narcotics (54%) were potential areas of improvement.

Conclusions: Although QOL in vascular amputees seems primarily determined by mobility impairment, pain, and emotional perturbation, our focus groups identified that physician-controlled factors such as the timing of amputation, informed decision making, and postamputation support may also play an important role. The assessment of patient preferences regarding maintenance of mobility at the cost of increased pain versus relief of pain with amputation at a cost of diminished mobility is central to shared decision making in CLI treatment.

Fig. 1

Domains that determine quality of life in vascular amputees. This figure shows how many focus group participants felt each domain impacted their health-related quality of life.

Fig. 2

Development of a QOL instrument. A summary of the key steps in devising a QOL instrument.