Patient perspectives on recovery and satisfaction after hemipelvectomy for pelvic tumors

Malignant pelvic tumors often require hemipelvectomy, which can cause substantial and sometimes prolonged functional impairment. Long-term patient experience remains poorly defined. This study aimed to evaluate the procedure's impact on physical and psychosocial function and quality of life (QoL), adequacy of preoperative counseling, and associations between caregiver support, care coordination, and long-term care burden.

Patients undergoing hemipelvectomy for primary bone or soft-tissue sarcoma or pelvic bone metastases at a single tertiary center from 2000 onward were retrospectively identified. Eligibility required a minimum two-year follow-up. Of 64 eligible, 30 (47%) completed validated patient-reported outcome measures: Combined Pain and Ambulatory CPAF, PROMIS-PI, PROMIS-PF, and EQ-5D-5L Utility Index, and a structured Likert survey of recovery experiences. Associations were assessed with Spearman's rank correlation coefficient (α = 0.05).

At a median 12-year follow-up, patients demonstrated moderate impairment: PROMIS-PF 39.7, PROMIS-PI 51.8, EQ-5D-5L 0.719, and CPAF 7-below population norms. Although 90% felt adequately informed preoperatively, 73% found recovery more challenging than expected, and 63% perceived prolonged recovery. Age, body mass index, and age-adjusted Charlson Comorbidity Index did not correlate with function. Perceived caregiver well-being was associated with physical function (ρ = 0.65, p < 0.001), ambulation (ρ = 0.39, p = 0.03), and QoL (ρ = 0.43, p = 0.02). Better caregiver preparation and care coordination were associated with improved long-term care manageability (ρ = 0.61, p < 0.001; ρ = 0.41, p = 0.03).

Hemipelvectomy recovery is often longer and harder than anticipated, even with high counseling satisfaction. Long-term function and QoL were more strongly associated with patient-perceived caregiver experience and care coordination than with traditional clinical factors, highlighting targets for patient- and caregiver-focused education.

Level IV.