Consumer design priorities for upper limb prosthetics

Purpose. To measure consumer satisfaction with upper limb prosthetics and provide an enumerated list of design priorities for future developments.

Methods. A self-administered, anonymous survey collected information on participant demographics, history of and goals for prosthesis use, satisfaction, and design priorities. The questionnaire was available online and in paper format and was distributed through healthcare providers, community support groups, and one prosthesis manufacturer; 242 participants of all ages and levels of upper limb absence completed the survey.

Results. Rates of rejection for myoelectric hands, passive hands, and body-powered hooks were 39%, 53%, and 50%, respectively. Prosthesis wearers were generally satisfied with their devices while prosthesis rejecters were dissatisfied. Reduced prosthesis weight emerged as the highest priority design concern of consumers. Lower cost ranked within the top five design priorities for adult wearers of all device types. Life-like appearance is a priority for passive/cosmetic prostheses, while improved harness comfort, wrist movement, grip control and strength are required for body-powered devices. Glove durability, lack of sensory feedback, and poor dexterity were also identified as design priorities for electric devices.

Conclusions. Design priorities reflect consumer goals for prosthesis use and vary depending on the type of prosthesis used and age. Future design efforts should focus on the development of more light-weight, comfortable prostheses.     

Adult acquired major upper limb amputation in Norway: prevalence,demographic features and amputation specific features. A population-based survey

Purpose.?To estimate the prevalence of adult acquired major upper limb amputation in Norway. To describe this amputee population regarding demographic features and amputation specific features. To compare our data to data collected internationally.

Method.?Population-based cross-sectional study on adult upper limb amputees with acquired limb loss through or proximal to the radio-carpal joint. Patients were found in the databases of the two companies in Norway that make upper limb prostheses and in the medical records of three of the largest Norwegian hospitals. Data were collected by postal questionnaires.

Results.?We estimated a population prevalence of 11.6 per 100,000 adults (n == 416). Our survey was not 100%% comprehensive and the estimate is conservative. The amputees were predominantly men with traumatic, unilateral, distal amputations at a young age. There were significant gender- and amputation level differences in cause. Most amputees had used prostheses. About four in ten were in paid employment.

Conclusions.?Our findings are mainly consistent with earlier studies from other countries. Implications of our findings related to the planning of future health care for these patients are outlined, including suggestion of regional multidisciplinary rehabilitation emphasising occupational rehabilitation and focus on preventive measures. Potential areas of follow-up are suggested.     

Evaluation of prosthetic usage in upper limb amputees

Purpose:?Upper limb amputations cause severe functional disability and lower the patient's self body image, with severe psychological implications. Many parameters are involved in the successful rehabilitation of upper limb amputations. The aim of this study was to investigate whether there are any parameters that might predict the successful prosthetic rehabilitation of upper limb amputees.

Method:?The records of 45 patients who had undergone an upper limb amputation were traced. The patients were evaluated according to four parameters: (1) Modified upper extremities amputees' questionnaire; (2) Pain level according to Visual Analog Scale (VAS), range from 1 (lowest) up to 10 (highest); (3) Pain type – phantom or pain in the stump; (4) Functional assessment of prosthetic usage.

Results:?Thirty (71.43%) of the patients reported difficulties with prosthesis usage. Twenty-three patients (54.76%) were satisfied with their prosthesis – 19 had cosmetic prosthesis and four had body-powered prosthesis.

Conclusion:?No significant affect of the amputation level except for trans-wrist amputation with 100% prosthesis use. No significant difference was found between prosthesis type and the correlation to stump problems.

The above-elbow amputees, with dominant hand amputation, who used functional prosthesis (body-powered), achieved the best functional outcome and result.     

Controlling a multi-degree of freedom upper limb prosthesis using foot controls: user experience

Abstract

Purpose: The DEKA Arm, a pre-commercial upper limb prosthesis, funded by the DARPA Revolutionizing Prosthetics Program, offers increased degrees of freedom while requiring a large number of user control inputs to operate. To address this challenge, DEKA developed prototype foot controls. Although the concept of utilizing foot controls to operate an upper limb prosthesis has been discussed for decades, only small-sized studies have been performed and no commercial product exists. The purpose of this paper is to report amputee user perspectives on using three different iterations of foot controls to operate the DEKA Arm. Method: Qualitative data was collected from 36 subjects as part of the Department of Veterans Affairs (VA) Study to Optimize the DEKA Arm through surveys, interviews, audio memos, and videotaped sessions. Three major, interrelated themes were identified using the constant comparative method: attitudes towards foot controls, psychomotor learning and physical experience of using foot controls. Results: Feedback about foot controls was generally positive for all iterations. The final version of foot controls was viewed most favorably. Conclusions: Our findings indicate that foot controls are a viable control option that can enable control of a multifunction upper limb prosthesis (the DEKA Arm).

• Implications for Rehabilitation

• Multifunction upper limb prostheses require many user control inputs to operate. Foot controls offer additional control input options for such advanced devices, yet have had minimal study.

• This study found that foot controls were a viable option for controlling multifunction upper limb prostheses. Most of the 36 subjects in this study were willing to adopt foot controls to control the multiple degrees of freedom of the DEKA Arm.

• With training and practice, all users were able to develop the psychomotor skills needed to successfully operate food controls. Some had initial difficulty, but acclimated over time.

     

Amputation rehabilitation and prosthetic restoration. From surgery to community reintegration

Purpose:?The purpose of this review is to summarize the literature related to the advances that have taken place in the management and rehabilitation care of limb amputation.

Results:?Prostheses for the lower and upper limb amputee have changed greatly over the past several years, with advances in components, socket fabrication and fitting techniques, suspension systems and sources of power and electronic controls. Higher levels of limb amputation can now be fitted with functional prostheses, which allow more patients to achieve independent life styles. This is of particular importance for the multi-limb amputee. The rehabilitation of more traditional lower limb levels of amputation have also greatly benefited from the technological advances including energy storing feet, electronic control hydraulic knees, ankle rotators and shock absorbers to mention a few. For the upper limb amputee, myoelectric and proportional controlled terminal devices and elbow joints are now used routinely in some rehabilitation facilities. Experimental prosthetic fitting techniques and devices such as the use of osseo-implantation for suspension of the prosthesis, tension control hands or electromagnetic fluids for knee movement control will also be briefly discussed in this paper.

Conclusion:?It is possible to conclude from this review that many advances have occurred that have greatly impacted the functional outcomes of patients with limb amputation.     

A comparison of upper limb amputees and patients with upper limb injuries using the Disability of the Arm,Shoulder and Hand (DASH)

Purpose:?To use the Disability of the Arm Shoulder and Hand (DASH) scale to measure the disability of patients with upper limb amputation(s) and to compare these to other upper limb injuries.

Method:?All 274 patients over the age of 18 years presenting to Prince Henry Hospital in Sydney over a 4-year time frame were given the DASH assessment tool and asked to complete it under supervision of the Occupational Therapist.

Results:?Patients with brachial plexus injuries, Complex Regional Pain Syndrome and bilateral upper limb amputations demonstrated significantly higher levels of disability to patients with unilateral upper limb amputations. Partial hand amputees reported a higher level of disability than major unilateral upper limb amputees. For the 48 patients who completed pre- and post-treatment assessments, there was a significant improvement in their health status.

Conclusions:?Further research is required to understand the factors that affect a patient's perceptions of their disability. Perhaps the definitive nature of an amputation and the immediate involvement of highly skilled health professionals serve to assist patients to accept their injury and therefore minimizes the level of disability.     

3D-printed upper limb prostheses: a review

Goal: This paper aims to provide an overview with quantitative information of existing 3D-printed upper limb prostheses. We will identify the benefits and drawbacks of 3D-printed devices to enable improvement of current devices based on the demands of prostheses users.

Methods: A review was performed using Scopus, Web of Science and websites related to 3D-printing. Quantitative information on the mechanical and kinematic specifications and 3D-printing technology used was extracted from the papers and websites.

Results: The overview (58 devices) provides the general specifications, the mechanical and kinematic specifications of the devices and information regarding the 3D-printing technology used for hands. The overview shows prostheses for all different upper limb amputation levels with different types of control and a maximum material cost of $500.

Conclusion: A large range of various prostheses have been 3D-printed, of which the majority are used by children. Evidence with respect to the user acceptance, functionality and durability of the 3D-printed hands is lacking. Contrary to what is often claimed, 3D-printing is not necessarily cheap, e.g., injection moulding can be cheaper. Conversely, 3D-printing provides a promising possibility for individualization, e.g., personalized socket, colour, shape and size, without the need for adjusting the production machine.

• Implications for rehabilitation

• Upper limb deficiency is a condition in which a part of the upper limb is missing as a result of a congenital limb deficiency of as a result of an amputation.

• A prosthetic hand can restore some of the functions of a missing limb and help the user in performing activities of daily living.

• Using 3D-printing technology is one of the solutions to manufacture hand prostheses.

• This overview provides information about the general, mechanical and kinematic specifications of all the devices and it provides the information about the 3D-printing technology used to print the hands.

     

Upper limb function in everyday life of children with cerebral palsy: description and review of parent report measures

Abstract

Purpose: To determine the role, in clinical practice and measurement of outcomes of upper limb interventions, of cerebral palsy-specific self- or parent-report measures of upper limb performance in everyday activities. Method: Search of databases and handsearching for information on test development procedures, psychometric properties or relevant studies to inform study objectives. Results: Children's Hand-use Experience Questionnaire holds most promise for guiding treatment planning but requires more psychometric evidence. ABILHAND-Kids has the strongest evidence for reliability, validity and sensitivity to change; evaluates impact of intervention on bimanual performance and can be used for children with unilateral or bilateral cerebral palsy. The original and revised versions of the Pediatric Motor Activity Log (PMAL) evaluate unilateral rather than bimanual upper limb performance. Neither ABILHAND-Kids nor PMAL offer information to assist treatment planning. PMAL-R is the only measure for the 2–5-year age group. No measure was adequate for children younger than 2 years to ascertain parents' perception of upper limb function in everyday activities. Conclusions: Understanding upper limb performance in everyday life, as perceived by children with cerebral palsy and their families, informs a comprehensive assessment and acknowledges the importance of the perspectives of child and family.

• Implications for Rehabilitation

• Cerebral palsy-specific self- or parent-report measures of upper limb performance in everyday life complement observational assessments in understanding upper limb performance

• CHEQ provides clinical information, ABILHAND-Kids is validated for children with unilateral and bilateral cerebral palsy and possesses the most robust psychometric properties, Revised PMAL measures unilateral upper limb use. No adequate measure for children under 2 years exists.

     

Multivariate prediction of upper limb prosthesis acceptance or rejection

Objective. To develop a model for prediction of upper limb prosthesis use or rejection.

Design. A questionnaire exploring factors in prosthesis acceptance was distributed internationally to individuals with upper limb absence through community-based support groups and rehabilitation hospitals.

Subjects. A total of 191 participants (59 prosthesis rejecters and 132 prosthesis wearers) were included in this study.

Methods. A logistic regression model, a C5.0 decision tree, and a radial basis function neural network were developed and compared in terms of sensitivity (prediction of prosthesis rejecters), specificity (prediction of prosthesis wearers), and overall cross-validation accuracy.

Results. The logistic regression and neural network provided comparable overall accuracies of approximately 84 ± 3%, specificity of 93%, and sensitivity of 61%. Fitting time-frame emerged as the predominant predictor. Individuals fitted within two years of birth (congenital) or six months of amputation (acquired) were 16 times more likely to continue prosthesis use.

Conclusions. To increase rates of prosthesis acceptance, clinical directives should focus on timely, client-centred fitting strategies and the development of improved prostheses and healthcare for individuals with high-level or bilateral limb absence. Multivariate analyses are useful in determining the relative importance of the many factors involved in prosthesis acceptance and rejection.     

Reliability,validity and factor structure of the upper limb subscale of the Motor Assessment Scale (UL-MAS) in adults following stroke

Purpose:?The upper limb items of the Motor Assessment Scale (MAS) have been shown to be a sensitive, valid and reliable measure of upper limb function for adults following stroke, however the validity and reliability of summing these items into an independent subscale has not yet been evaluated. The stability, internal consistency and construct validity of the upper limb MAS subscale (UL-MAS) was assessed in this study.

Method:?Twenty-seven inpatients following stroke (mean age?=?67 years, range?=?40?–?80) were sampled from an acute, inpatient rehabilitation setting. Patients were evaluated with ‘Upper Arm Function’, ‘Hand Movements’, and ‘Advanced Hand Activities’ items of the MAS by masked physiotherapists who had received standardized training in administration of the MAS.

Results:?All items were explained by one factor on confirmatory factor analysis and correlated significantly with one another and with the composite (summed total) score. Internal consistency analysis produced a Cronbach's alpha of 0.83 which did not benefit from removal of any items.

Conclusions:?The acceptable internal consistency score obtained verifies the validity and reliability of using the UL-MAS as an independent scale. This study has also verified the construct validity of the UL-MAS subscale and provides a valuable extension of previous work, which together demonstrates the value of the UL-MAS as a responsive, valid and reliable measure of upper limb function in adults following stroke. The UL-MAS produced a single, composite score that could be interpreted as a total score for upper limb function in this population.     

A survey on what Australians with upper limb difference want in a prosthesis: justification for using soft robotics and additive manufacturing for customized prosthetic hands

Abstract

Purpose: Upper limb prostheses are part of a rapidly changing market place. Despite development in device design, surveys report low levels of uptake and dissatisfaction with current prosthetic design. In this study, we present the results of a survey conducted with people with upper limb difference in Australia on their use of current prostheses and preferences in a prosthetic in order to inform future prosthetic hand design.

Methods: An online survey was conducted on upper limb amputees, with 27 respondents that completed the survey. The survey was a mixture of open-ended questions, ranking design features and quantitative questions on problems experienced and desired attributes of future prosthesis designs.

Results: Common key issues and concerns were isolated in the survey related to the weight, manipulation and dexterity, aesthetics, sensory feedback and financial cost; each of which could be addressed by additive manufacturing and soft robotics techniques.

Conclusions: The adaptability of additive manufacturing and soft robotics to the highlighted concerns of participants shows that further research into these techniques is a feasible method to improve patient satisfaction and acceptance in prosthetic hands.

• Implications for rehabilitation

• Even with recent developments and advances in prosthetic design, the needs and desires of prosthetic users are not being met with current products.

• The desires and needs of those with upper limb difference are diverse.

• Using additive manufacturing to produce prosthetics allows for mass customization of prosthetics to meet these diverse needs while reducing costs.

• A soft robotic approach to prosthetics can help meet the desires of reducing weight and costs, while maintaining functionality.

     

Prosthesis use in adult acquired major upper-limb amputees: patterns of wear,prosthetic skills and the actual use of prostheses in activities of daily life

Purpose: To describe patterns of prosthesis wear and perceived prosthetic usefulness in adult acquired upper-limb amputees (ULAs). To describe prosthetic skills in activities of daily life (ADL) and the actual use of prostheses in the performance of ADL tasks. To estimate the influence of prosthetic skills on actual prosthesis use and the influence of background factors on prosthetic skills and actual prosthesis use. Method: Cross-sectional study analysing population-based questionnaire data (n?=?224) and data from interviews and clinical testing in a referred/convenience sample of prosthesis-wearing ULAs (n?=?50). Effects were analysed using linear regression. Results: 80.8% wore prostheses. 90.3% reported their most worn prosthesis as useful. Prosthetic usefulness profiles varied with prosthetic type. Despite demonstrating good prosthetic skills, the amputees reported actual prosthesis use in only about half of the ADL tasks performed in everyday life. In unilateral amputees, increased actual use was associated with sufficient prosthetic training and with the use of myoelectric vs cosmetic prostheses, regardless of amputation level. Prosthetic skills did not affect actual prosthesis use. No background factors showed significant effect on prosthetic skills. Conclusions: Most major ULAs wear prostheses. Individualised prosthetic training and fitting of myoelectric rather than passive prostheses may increase actual prosthesis use in ADL.

Implications for Rehabilitation

• Arm prostheses are important functional aids for adult acquired major upper-limb amputees (ULAs).

• Despite being mainly satisfied with their prostheses, reporting their prostheses as useful and showing good prosthetic skills, prosthesis-wearing major ULAs do not use their prostheses for more than about half of the activities of daily life (ADL) tasks carried out in everyday life.

• In unilateral ULAs, individualised and targeted prosthetic training may increase optimal, active prosthesis use in ADL.

• Fitting the amputee with myoelectric rather than passive prostheses may increase prosthesis use in ADL, regardless of amputation level.

     

The Cerebral Palsy Kinematic Assessment Tool (CPKAT): feasibility testing of a new portable tool for the objective evaluation of upper limb kinematics in children with cerebral palsy in the non-laboratory setting

Purpose: Efficacy of treatment to improve upper-limb activity of children with cerebral palsy (CP) is typically evaluated outside clinical/laboratory environments through functional outcome measures (e.g. ABILHAND kids). This study evaluates CPKAT, a new portable laptop-based tool designed to objectively measure upper-limb kinematics in children with CP. Methods: Seven children with unilateral CP (2 females; mean age 10 years 2 months (SD 2 years 3 months), median age 9 years 6 months, range 6 years 5 months, MACS II–IV) were evaluated on copying, tracking and tracing tasks at their homes using CPKAT. CPKAT recorded parameters relating to spatiotemporal hand movement: path length, movement time, smoothness, path accuracy and root mean square error. The Wilcoxon signed ranks test explored whether CPKAT could detect differences between the affected and less-affected limb. Results: CPKAT detected intra-limb differences for movement time and smoothness (aiming), and path length (tracing). No intra-limb tracking differences were found, as hypothesised. These findings are consistent with other studies showing that movements of the impaired upper limb in unilateral CP are slower and less smooth. Conclusion: CPKAT provides a potential solution for home-based assessment of upper limb kinematics in children with CP to supplement other measures and assess functional intervention outcomes. Further validation is required.

• Implications for Rehabilitation

• This paper demonstrates the feasibility of evaluating upper limb kinematics in home using CPKAT, a portable laptop-based evaluation tool.

• We found that CPKAT is easy to set-up and use in home environments and yields useful kinematic measures of upper limb function.

• CPKAT can complement less responsive patient reported or subjectively evaluated functional measures for a more complete evaluation of children with cerebral palsy.

• Thus, CPKAT can help guide a multi-disciplinary team to more effective intervention and rehabilitation for children with cerebral palsy.

     

The applicability of four clinical methods to evaluate arm and hand function in all stages of spinal muscular atrophy type II

Abstract

Aim: To evaluate the ability of four clinical methods to reflect arm and hand function at impairment and activity level and to determine their ability to discriminate among SMA II patients of all ages and in all stages of the disease. Methods: Fifty-two patients with SMA II (age range: 8–73 years) were assessed by means of the Egen Klassifikation 2 (EK2 scale), the Motor Function Measure Scale (MFM D3), the Manual Muscle Test (MMT) and Hand-Held Dynamometry (HHD) in full fist grip and lateral pinch grip. Patients were classified into six levels of upper limb function by means of the Brooke Upper Limb Scale, and the four methods’ ability to differentiate among patients within these levels was calculated. Modified versions of the EK2 scale (EK Upper Limb) and the MFM D3 (MFM D3 Upper Limb) were assessed in the same manner. Results: The patients’ physical abilities were best described by the MMT and EK2 while the “EK Upper Limb”, MFM D3 and MMT were best at discriminating among patients across the range of upper limb function. Quantitative muscle tests as measured by Citec? HHD were less applicable to weak patients; full fist grip could discriminate among patients at Brooke levels 3–5, and lateral pinch grip among the strongest patients. Conclusion: At the impairment level, MMT is the superior measure of muscle function in very weak patients in whom HHD cannot reflect capacity. At the activity level, the EK 2 represents daily activities whereas the MFM D3 measures motor functions. In differentiating among SMA II patients of all ages and in all stages of the disease, the ability of abbreviated versions of scales targeting upper limb function is superior to unabridged versions of these scales.

• Implications for Rehabilitation

• Evaluation of upper limb function in spinal muscular atrophy II

• Even very weak patients with SMA II have some residual upper limb function that is measurable if the right method is chosen.

• The Manual muscle test is applicable to all patients with SMA II and is useful to determine possible interventions – such as methods to drive a wheelchair or operate a computer.

• Abbreviated versions of the EK2 scale and the MFM are useful as methods to evaluate subtle changes in upper limb function resulting from disease progression or interventions.

     

Recovery-related anxiety and disability following upper limb injury: the importance of context

Abstract

Purpose: Anxiety following traumatic upper limb injury is common and may affect rehabilitation outcomes. Most previous research has focused on psychiatric anxiety disorders among those with severe injuries. The aims of this study were to determine the prevalence of anxiety among patients with mild to moderate traumatic upper limb injuries, to investigate the correlation between anxiety and disability, and to provide preliminary validation of the Recovery-Related Anxiety Questionnaire (RRAQ). Method: Eighty-four adults with a recent traumatic upper limb injury completed the State & Trait Anxiety Inventory (STAI), the Pain Anxiety Symptoms Scale (PASS-20), the RRAQ and the shortened Disability of the Arm, Shoulder and Hand Questionnaire (QuickDASH). Prevalence rates of anxiety were calculated and linear regression analysis was used to identify predictors of QuickDASH scores. Results: All participants reported some anxiety, with higher levels of recovery-related anxiety than general anxiety. In linear regression analysis, the four types of anxiety accounted for 29% of the variability in QuickDASH scores. The RRAQ accounted for 19% of the variability in QuickDASH scores. Conclusions: Recovery-related forms of anxiety appear to be more common and more strongly associated with disability than general anxiety symptoms for patients with mild to moderate traumatic upper limb injuries.

• Implications for Rehabilitation

• Following mild to moderate traumatic upper limb injury, anxiety about the injury and recovery is common.

• Recovery-related anxiety is more strongly associated with disability than general anxiety symptoms.

• Phrasing questions about anxiety directly associated with the recovery experience may give greater insight into the anxiety patients with mild to moderate upper limb injuries are experiencing.

• This insight may help clinicians to directly address recovery-related issues, potentially decreasing disability experienced by patients.

     

Management of shoulder and proximal upper limb spasticity using botulinum toxin and concurrent therapy interventions: A preliminary analysis of goals and outcomes

Purpose. To explore the role of Botulinum Toxin type A (BoNT-A) in the management of the spastic hemiplegic shoulder and identify the common achievable goals for treatment.

Method. Set in a regional spasticity management service in the UK, a prospective observational cohort study was undertaken. Patients (n = 16) were receiving BoNT-A (Dysport©) injection and concurrent therapy for spasticity of the shoulder girdle or proximal upper limb following stroke/other acquired brain injury. Mean age 54.5 (SD 15.7) years. Mean time since injury: 15.7 months. Functional goals for intervention were determined through agreement with the patient or their carers using Goal Attainment Scaling (GAS). Evaluation of spasticity (Modified Ashworth Scale), pain (numbered graphic rating scale) and three standard passive function tasks (washing, dressing and positioning) were also undertaken.

Results. Sixteen weeks post-injection, significant improvements were identified in spasticity (Z = ?3.535, p <0.0001), pain (Z = ?1.942, p = 0.052) and passive function (Z = ?3.172, p = 0.002). GAS scores had improved in all but one subject, with goals either achieved or over-achieved.

Conclusions. BoNT-A injection of the proximal upper limb, with combined therapy, produced a reduction in spasticity, improvement in passive function and pain. Management of upper limb spasticity should include evaluation and, if necessary treatment, of the shoulder girdle and proximal musculature.     

Comparison of clinical test and questionnaires for the evaluation of upper limb prosthetic use in children

Purpose:?The aim of the present study was to find out if there was a correlation between an observational clinical test and a questionnaire for the evaluation of upper limb prosthetic use in children and to determine which one was better and easier to use in clinical practice.

Method:?Twenty children who were patients of the children's prosthetic clinic at the Rehabilitation Institute in Ljubljana, Slovenia, and had a functional prosthesis were included in the study. The age appropriate subtest of the University of New Brunswick Test of Prosthetic Function (the UNB test) was assessed by an occupational therapist. Parents completed either the Child Amputee Prosthetics Project-Functional Status Inventory for Preschool children (CAPP-FSIP) or the Child Amputee Prosthetics Project-Functional Status Inventory (CAPP-FSI), depending on which was appropriate for the child's age. Information was limited to the upper extremity items.

Results:?We found a significant correlation between UNB spontaneity and skill score (r?=?0.956, p?=?0.000) and also between the parental CAPP score and UNB test (UNB spontaneity—CAPP activities r?=?0.634, p?=?0.003; UNB spontaneity—CAPP prosthetic use r?=?0.542, p?=?0.014, UNB skill—CAPP activities r?=?0.559, p?=?0.010, UNB skill—CAPP prosthetic use r?=?0.597, p?=?0.005).

Conclusions:?We concluded that both instruments can be used for assessing upper limb prosthetic use in children but neither is an optimal choice.     

Children with congenital limb deficiency in Norway: issues related to school life and health-related quality of life. A cross-sectional study

Purpose: To describe clinical features, issues related to school life and health-related quality of life (HRQOL) for children with congenital limb deficiency (CLD) and compare these children to Norwegian school children on HRQOL.

Method: Cross-sectional study. In 2010, a postal questionnaire, designed for this study and the Paediatric Quality of Life Inventory (PedsQL), was sent to 154 eligible parents of children with CLD, aged 6–18 years and registered at TRS National Resource Centre for Rare Disorders in Norway.

Results: Response rate 44% (n?=?67), median age 11 years, 42% were girls. Of the total group, 46 had unilateral upper limb deficiency (UULD) and 21 had multiple/lower limb deficiency (MLD/LLD). The most common UULD was below-elbow deficiency, of these, 65% used grip-improving devices, and 35% used prostheses. Children with UULD-reported PedsQL score similar to Norwegian schoolchildren (NSC). The MLD/LLD group was heterogeneous; most had below-elbow/knee deficiency. In this group, PedsQL scores were reduced for physical and social functioning compared with NSC. Compared with children with UULD, more children with MLD/LLD were restricted in participation because of pain and fewer participated in physical education with peers.

Conclusions: Most children with CLD participated with their peers and managed well in everyday life. Children with MLD/LLD seemed to have more challenges than children with UULD. Approximately one-third of all the children had assistive devices and/or practical assistance in school.

• Implications for Rehabilitation

• Most children with upper-limb deficiency (UULD) in Norway manage well in everyday life and have HRQOL equal to other Norwegian children. Many choose grip-improving devices instead of prostheses. Their preferences should be respected and taken into account as the need for new assistive devices arise.

• For children with pronounced disabilities, access to, and use of, assistive devices, adaptions and practical assistance may be important for participation. Cooperation with the child and the parents is necessary to find useful measures.

• Physical education and practical subjects may provide special challenges, both for children and their teachers. Children themselves often find good solutions and the tasks should be planned ahead in cooperation with them.