Identifying priorities and developing strategies for building capacity in amputation research in Canada.

BACKGROUND: Compared to other patient population groups, the field of amputation research in Canada lacks cohesion largely due to limited funding sources, lack of connection among research scientists, and loose ties among geographically dispersed healthcare centres, research institutes and advocacy groups. As a result, advances in clinical care are hampered and ultimately negatively influence outcomes of persons living with limb loss. OBJECTIVE: To stimulate a national strategy on advancing amputation research in Canada, a consensus-workshop was organized with an expert panel of stakeholders to identify key research priorities and potential strategies to build researcher and funding capacity in the field. METHODS: A modified Delphi approach was used to gain consensus on identifying and selecting an initial set of priorities for building research capacity in the field of amputation. This included an anonymous pre-meeting survey (N = 31 respondents) followed by an in-person consensus-workshop meeting that hosted 38 stakeholders (researchers, physiatrists, surgeons, prosthetists, occupational and physical therapists, community advocates, and people with limb loss). RESULTS: The top three identified research priorities were: (1) developing a national dataset; (2) obtaining health economic data to illustrate the burden of amputation to the healthcare system and to patients; and (3) improving strategies related to outcome measurement in patients with limb loss (e.g. identifying, validating, and/or developing outcome measures). Strategies for moving these priorities into action were also developed. CONCLUSIONS: The consensus-workshop provided an initial roadmap for limb loss research in Canada, and the event served as an important catalyst for stakeholders to initiate collaborations for moving identified priorities into action. Given the increasing number of people undergoing an amputation, there needs to be a stronger Canadian collaborative approach to generate the necessary research to enhance evidence-based clinical care and policy decision-making.IMPLICATIONS FOR REHABILITATIONLimb loss is a growing concern across North America, with lower-extremity amputations occurring due to complications arising from diabetes being a major cause.To advance knowledge about limb loss and to improve clinical care for this population, stronger connections are needed across the continuum of care (acute, rehabilitation, community) and across sectors (clinical, advocacy, industry and research).There are new surgical techniques, technologies, and rehabilitation approaches being explored to improve the health, mobility and community participation of people with limb loss, but further research evidence is needed to demonstrate efficacy and to better integrate them into standard clinical care.

Patterns of myeloarchitecture in lower limb amputees: an MRI study.

Functional studies of cortical plasticity in humans suggest that the motor cortex reorganizes when the descending motor output pathway is disrupted as a result of limb amputation. The question thus arises if the underlying anatomical organization of the motor cortex is also altered in limb amputation. Owing to challenges involved in imaging the thin cerebral cortex in vivo, there is limited data available on the anatomical or morphological plasticity of the motor cortex in amputation. In this paper, we study the morphology of the primary motor cortex in four lower limb amputees with 37 or more years of amputation and four age and gender-matched controls using 0.7 mm isotropic, T1-weighted MRI optimized to produce enhanced intracortical contrast based on myelin content. We segment the cortex into myelinated and unmyelinated gray matter. We determine the myelinated thickness which is the thickness of the well-myelinated tissue in the deeper layers of the cortex. We compare the bilateral differences in the myelinated thickness between amputees and controls. We also compare bilateral differences in cortical thickness between the two groups. Our measurements show no statistically significant difference between the amputees and controls in the myelinated thickness and in cortical thickness, in the region of the primary motor cortex representing the lower leg.

The utility of hand transplantation in hand amputee patients.

PURPOSE: To measure the desirable health outcome, termed utility, and the expected quality-adjusted life years (QALYs) gained with hand composite tissue allotransplantation (CTA) using hand amputee patients and the general public. METHODS: Using the standard gamble (SG) and time trade-off (TTO) techniques, utilities were obtained from 30 general public participants and 12 amputee patients. The health utility and net QALYs gained or lost with transplantation were computed. A sensitivity analysis was conducted to account for the effects of lifelong immunosuppression on the life expectancy of transplant recipients. Higher scores represent greater utility. RESULTS: Hand amputation mean health utility as measured by the SG and TTO methods, respectively, was 0.72 and 0.80 for the general public and 0.69 and 0.70 for hand amputees. In comparison, hand CTA mean health utility was 0.74 and 0.82 for the general public and 0.83 and 0.86 for amputees. Hand CTA imparted an expected gain of 0.9 QALYs (SG and TTO) in the general public and 7.0 (TTO) and 7.8 (SG) QALYs in hand amputees. A loss of at least 1.7 QALYs was demonstrated when decreasing the life expectancy in the sensitivity analysis in the hand amputee group. CONCLUSIONS: Hand amputee patients did not show a preference toward hand CTA with its inherent risks. With this procedure being increasingly adopted worldwide, the benefits must be carefully weighed against the risks of lifelong immunosuppressive therapy. This study does not show clear benefit to advocate hand CTA.

The Lower Limb Amputee Measurement Scale: reliability and predictive validity.

This study assesses the reliability and predictive validity of the Lower Limb Extremity Amputee Measurement Scale (LLAMS), which is an assessment tool designed to predict the length of stay (LOS) of patients with lower limb amputations in a rehabilitation program. In order to evaluate inter-rater reliability a prospective evaluation was completed by five independent evaluators (n = 10). Predictive validity was evaluated retrospectively by comparing the LLAMS predicted LOS to actual LOS (n = 147). The ability of the amputee team members to administer the LLAMS to patients was very high (ICC [2,1] = 0.98, CI 95% = 0.96 - 0.99, F[9, 36] = 78.71, p < 0.05). In addition, a moderate positive correlation was found between the LLAMS predicted LOS and the actual LOS (Pearson Correlation Coefficient, r = 0.465, p < 0.01), and the LLAMS was able to identify those patients who required short versus long rehabilitation stays. The incorporation of the LLAMS into the physiatrist's initial assessment of patients in the amputee clinic has enhanced the ability to manage better the LOS and the time patients wait to enter the rehabilitation program.

Quality of life in multiple sclerosis patients with urinary disorders: discriminative validation of the English version of Qualiveen.

UNLABELLED: The Qualiveen questionnaire is a urinary disorder (UD)-specific health related quality of life (HRQL) instrument. Recent data suggests Qualiveen has excellent validity in French-speaking multiple sclerosis (MS) patients. AIM: To assess discriminative measurement properties of the English version of Qualiveen. METHODS: Fifty-five Canadian MS out-patients completed a set of questionnaires, including Qualiveen, MSQOL-54, a MS-specific HRQL questionnaire, urinary function assessments and the Expanded Disability Status Scale (EDSS) twice at an interval of two to four weeks. RESULTS: Qualiveen proved internally consistent (Cronbach's alpha coefficients 0.73 to 0.90 for the four Qualiveen domains) and test-retest reliable (intraclass correlation coefficients 0.88 to 0.94). Consistent with a priori predictions, we found a strong association between overall Qualiveen score and the degree of incontinence (0.63), a moderate correlation with the type of urinary symptoms (0.49), a weak association with manner of voiding (0.28) and weak or absent correlations with MSQOL-54 domains, EDSS bladder/bowel and global EDSS. Predictions proved generally accurate (weighted kappa = 0.65). CONCLUSION: The internal consistency, test-retest reliability and cross-sectional construct validity of the English version of Qualiveen are excellent, and similar to the original French version. Further studies should explore Qualiveen's longitudinal validity and responsiveness.