Women with limb loss: rationale, design and protocol for a national, exploratory needs assessment to evaluate the unique physical and psychosocial needs of women with limb loss.

INTRODUCTION: There is a growing population of women with limb loss, yet limited research is available to provide evidentiary support for clinical decision-making in this demographic. As such, there is a critical gap in knowledge of evidence-based healthcare practices aimed to maximise the physical and psychosocial needs of women with limb loss. The objective of this study is to develop a comprehensive, survey-based needs assessment to determine the unique impact of limb loss on women, including physical and psychosocial needs. METHODS AND ANALYSIS: A bank of existing limb loss-specific and non-limb loss-specific surveys were arranged around domains of general health, quality of life, prosthetic use and needs, psychosocial health and behaviours and body image. These surveys were supplemented with written items to ensure coverage of relevant domains. Written items were iteratively refined with a multidisciplinary expert panel. The interpretability of items and relevance to limb loss were then internally tested on a small group of rehabilitation, engineering and research professionals. A diverse sample of 12 individuals with various levels of limb loss piloted the instrument and participated in cognitive interviews. Items from existing surveys were evaluated for relevance and inclusion in the survey, but not solicited for content feedback. Pilot testing resulted in the removal of 13 items from an existing survey due to redundancy. Additionally, 13 written items were deleted, 42 written items were revised and 17 written items were added. The survey-based needs assessment has been crafted to comprehensively assess the wide spectrum of issues facing women with limb loss. The final version of the survey-based needs assessment included 15 subsections. ETHICS AND DISSEMINATION: This study was approved by the Veterans Affairs Central Institutional Review Board. The results will be disseminated through national and international conferences, as well as through manuscripts in leading peer-reviewed journals. TRIAL REGISTRATION NUMBER: No healthcare intervention on human participants was conducted.

Appropriateness of advanced upper limb prosthesis prescription for a patient with cognitive impairment: a case report.

PURPOSE: To describe a participant with scapulo-thoracic amputation and cognitive impairment trained to use the DEKA Arm and discuss factors relevant to the determination that he was not an appropriate candidate for independent home use of the device. METHOD: The participant underwent 40 h of in-laboratory training with the DEKA Arm Advanced Upper Limb Prosthesis. Pre-training neuropsychological measures of cognition were collected. Qualitative and quantitative data related to functional performance, quality of life and pain were collected after 10 h of training, and at the conclusion of training. Using a constant comparative approach, data were binned into major themes; elements within each theme were identified. RESULTS: Six themes were relevant to the determination that the participant was inappropriate for home use of the DEKA Arm: physical and mental health; learning, memory and cognition; adult role function; functional performance; user safety and judgement and capacity for independent device use. Issues contraindicating unsupervised device use included: uncontrolled health symptoms, poor knowledge application, safety concerns, absenteeism and performance degradation under stress. CONCLUSION: The findings have implications for training with and prescription of the DEKA Arm and other complex upper limb prostheses. Further research is needed to develop a model to guide prescription of technologically complex upper limb prostheses. Implications for Rehabilitation Advanced upper limb prostheses, like the DEKA Arm, promise greater functionality, but also may be cognitively demanding, raising questions of when, and if, prescription is appropriate for patients with cognitive impairment. At this time, no formal criteria exist to guide prescription of advanced upper limb prostheses. Each clinical team applies their own informal standards in decision-making. In this case report, we described six factors that were considered in determining whether or not a research participant, with scapulo-thoracic amputation and cognitive impairment was appropriate for home use of a complex upper limb prosthesis. The findings have implications for training with and prescription of the DEKA Arm, and highlights the need for further research to develop prescription guidelines for advanced assistive devices.

Development and evaluation of the activities measure for upper limb amputees.

OBJECTIVES: (1) To develop a measure of activities for adults with upper limb amputation: the Activities Measure for Upper Limb Amputees (AM-ULA); and (2) to conduct initial psychometric evaluation of the measure. DESIGN: This was a cohort study where the prototype measure was administered twice within 1 week. Tests were videotaped and graded by 2 independent raters. Interrater reliability, test-retest reliability, internal consistency, and minimal detectable change were estimated. Known group validity was examined using analyses of variance comparing scores of transradial, transhumeral, and shoulder level amputees. Convergent validity was examined by correlating AM-ULA scores with dexterity tests and self-reported function. SETTING: Hospital outpatient. PARTICIPANTS: Subjects (N=52) with upper limb amputation. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Not applicable. RESULTS: Intraclass correlation coefficients (ICCs) for test-retest reliability were .88 to .91. ICCs for interrater reliability were .84 to .89. Cronbach alphas were .89 to .91. The minimal detectable change at the 90% confidence interval was 3.7 points. Subjects with more distal levels of limb loss had better scores than those with more proximal levels (P<.01). The AM-ULA was moderately correlated with most dexterity tests and self-reported function. CONCLUSIONS: The AM-ULA is a new measure of activity performance for adults with upper limb amputation that considers task completion, speed, movement quality, skillfulness of prosthetic use, and independence in its rating system. It has good interrater reliability, test-retest reliability, and demonstrated known group validity.

Advanced upper limb prosthetic devices: implications for upper limb prosthetic rehabilitation.

The number of catastrophic injuries caused by improvised explosive devices in the Afghanistan and Iraq Wars has increased public, legislative, and research attention to upper limb amputation. The Department of Veterans Affairs (VA) has partnered with the Defense Advanced Research Projects Agency and DEKA Integrated Solutions to optimize the function of an advanced prosthetic arm system that will enable greater independence and function. In this special communication, we examine current practices in prosthetic rehabilitation including trends in adoption and use of prosthetic devices, financial considerations, and the role of rehabilitation team members in light of our experiences with a prototype advanced upper limb prosthesis during a VA study to optimize the device. We discuss key challenges in the adoption of advanced prosthetic technology and make recommendations for service provision and use of advanced upper limb prosthetics. Rates of prosthetic rejection are high among upper limb amputees. However, these rates may be reduced with sufficient training by a highly specialized, multidisciplinary team of clinicians, and a focus on patient education and empowerment throughout the rehabilitation process. There are significant challenges emerging that are unique to implementing the use of advanced upper limb prosthetic technology, and a lack of evidence to establish clinical guidelines regarding prosthetic prescription and treatment. Finally, we make recommendations for future research to aid in the identification of best practices and development of policy decisions regarding insurance coverage of prosthetic rehabilitation.