Background: After major lower limb amputation, persistent pain is common, with up to 85% of patients reporting recurring phantom or residual-limb pain. Although pain management is an important factor of quality of life in patients with lower limb amputations, there are few long-term data regarding the frequency of persistent pain and how it impacts prosthesis use. Questions/purposes: (1) How prevalent are different types of pain at long-term follow-up after amputation for malignant tumors? (2) What association do different pain types have with daily prosthesis use? Methods: Between 1961 and 1995, 124 major amputations for malignant tumors were performed at one center in Austria in patients (1) who spoke German and (2) whose surgical date resulted in the possibility of a minimum follow-up time of 20 years at the time of this survey; those patients were considered potentially eligible for this retrospective study. The indications for major amputation were to achieve local tumor control in limbs that the surgeon deemed unsalvageable without amputation. Of those 124 patients, 71% (88) had died, 9% (11) could not be reached, and 3% (4) declined to participate. Thus, 58% (21 of 36) of those living at the time of this study and who underwent lower limb amputation between 1961 and 1993 with a median (range) follow-up duration of 41 years (23 to 55) completed a standardized questionnaire, including an assessment of pain and daily prosthesis use during the year before the survey. Phantom pain, residual limb pain, and back pain were each further subclassified into pain frequency, intensity, and restrictions in activities of daily living (ADL) due to the specific pain form and rated on a 5- (pain frequency) and 10-point (pain intensity, restrictions in ADL) numerical rating scale. Before multivariate regression analysis, daily prosthesis use was correlated with pain parameters using Spearman correlation testing. Results: Seventeen of 21 patients reported phantom limb and back pain, and 15 patients reported residual limb pain in the past year. Median (range) phantom pain intensity was 7 (1 to 10) points, median residual limb pain intensity was 4 (1 to 9) points, and median back pain intensity was 5 (1 to 10) points. After controlling for relevant confounding variables such as age at amputation, age at survey, and stump length, we found that less intense residual limb pain (defined on a 10-point scale with 1 representing no pain at all and 10 representing extremely strong pain [95% CI 0.3 to 1.0]; r = 0.8; p = 0.003) was associated with greater daily prosthesis use. Higher amputation levels showed a decreased daily prosthesis use compared with patients with lower amputation levels (defined as transfemoral amputation versus knee disarticulation versus transtibial amputation [95% CI 0.3 to 5.1]; r = 0.5; p = 0.03). Conclusion: Decades after surgery, many patients with lower limb amputations experience pain that restricts them in terms of ADLs and decreases their daily prosthesis use. This information supports the need for regular residual limb inspections and careful prosthesis fitting even at long-term follow-up, as effective prosthesis fitting is a modifiable cause of residual limb pain. Future studies evaluating long-term treatment effects of pain relief surgery and therapeutic alternatives to conservative pain treatments should be performed, as these approaches may help alleviate pain in patients with refractory postamputation pain. Level of Evidence: Level IV, therapeutic study.

Summary: Objective: The preferred treatment for malignant bone and soft tissue tumors is limb salvage surgery; the Toronto extremity salvage score (TESS) is commonly used to measure physical functioning of the affected extremity. The aims of this study were to translate and culturally adapt the German version of the TESS, as well as to explore its convergent reliability, validity and re-test reliability. Study design: Patients (n = 50) 32 lower extremity (LE) and 18 upper extremity (UE) were asked to fill out the German TESS two times (t1: clinical visit, t2: regular email) and the SF-36 once. Methods: The TESS questionnaires were translated from English into German, back translated into English, and culturally adapted. The reliability was assessed with Cronbach’s alpha (α). The validity was measured with the SF-36 physical component score and TESS using the Spearman rank correlation coefficient (r). Furthermore, the test-retest reliability was calculated with the intraclass correlation coefficient (ICC). Results: Internal consistency for both questionnaires was excellent (LE t1: α = 0.924, t2: α = 0.952; UE t1: α = 0.957, t2: α = 0.898). A statistically significant correlation was found between the SF-36 physical component scale and the German TESS (LE r = 0.741, UE r = 0.713). The ICC between baseline (t1) and re-test (t2) was 0.952 and 0.871 for the lower and upper extremities, respectively. Conclusion: Initial evidence demonstrated that the German TESS is a valid and reliable instrument for use with patients after surgical treatment of malignant bone or soft tissue sarcoma.