To Örebro University

OBJECTIVE: To validate information in the Swedish Register for Congenital Malformations (SRCM).

METHODS: A comparison was made with a clinic-based register kept at the Limb Deficiency and Arm Prosthesis Centre (LDAPC). The report frequency and the quality of the information in SRCM were analysed. Cases were classified according to a detailed, clinically relevant classification, the ISO 8548-1:89 method.

OUTCOME MEASURES: The completeness of SRCM was first estimated. The Kappa statistic was then used to assess the agreement between the two registers regarding individual categories and across all categories.

RESULTS: For the period 1973-1987, we found 125 cases of upper limb reduction deficiencies (ULRD) in the clinic-based register, of which 117 was found in the national register. The completeness of SRCM was thus estimated to be 94% (95% confidence interval 89-98%). The inter-register agreement varied from almost perfect agreement in laterality of deficiency (Kappa 0.98) to substantial agreement in type and level of deficiency (Kappa 0.72-0.79). For specific levels of transverse deficiency, however, the agreement varied between -0.05 and 0.66.

CONCLUSIONS: The results indicate that SRCM, with its calculated underestimation of 6%, can be used for studying the prevalence of ULRD in Sweden. However, as SRCM is a surveillance register, the quality of some information seems to be low, making detailed description of cases difficult. Use of the population register data for clinical purposes could therefore result in lower validity. Additional information and follow-up of specific cases are therefore recommended.

The incidence of scoliosis and trunk asymmetry were studied in 60 patients with upper limb dysmelia of the transverse type. The evaluations were based on radiographic measurements of the spine and scoliometer readings of the angle of trunk rotation (ATR), which were correlated with the side and level of the limb deficiency and also with leg length-inequality (LLI). Nineteen patients (31%) had a scoliosis between 10 and 19 degrees, whereas the curves were between 5 and 10 degrees in another 30 patients and the remainder had no measurable curve. The scoliosis seemed at least partly to be of postural origin as LLI significantly correlated with the direction of the curves, but there was no correlation between the Cobb angles and the magnitude of LLI. The scoliometer readings did not correlate with the scoliosis or LLI. Our findings indicate that most patients with upper limb transverse amputations do not develop a significant scoliosis. A scoliometer screen has a low positive predictive rate for scoliosis and the diagnosis of scoliosis requires a radiograph of the spine.

OBJECTIVE: To report the results from a Rasch rating scale analysis of the Assessment of Capacity for Myoelectric Control (ACMC) implemented to evaluate internal scale validity, person response validity, separation reliability, targeting and responsiveness of the measures over time.

DESIGN: Longitudinal data (18 months) from a prospective study of development of capacity for myoelectric control in children and adults were used for the analysis.

PATIENTS: A consecutive sample of 75 subjects (43 males, 32 females) with upper limb reduction deficiency or amputation and myoelectric prosthetic hands referred for occupational therapy from September 2000 to March 2002. Participants' ages ranged from 2 to 57 years.

METHODS: Outcome measure was the ACMC. Occupational therapists completed 210 assessments at an arm prosthesis centre in Sweden. A two-faceted rating scale analysis of the data was performed.

RESULTS: All 30 ACMC items and 96.2% of participants demonstrated goodness-of-fit to the rating scale model for the ACMC. Separation and SE values suggested adequate reliability of the item and person estimates.

CONCLUSION: The items demonstrated internal scale validity and the participants demonstrated person response validity. The ACMC was well targeted and sensitive enough to detect expected change in ability.

OBJECTIVE: To examine the reliability of the Assessment of Capacity for Myoelectric Control (ACMC) in children and adults with a myoelectric prosthetic hand.

DESIGN: Intra-rater and inter-rater reliability estimated from reported assessments by 3 different raters.

PATIENTS: A sample of convenience of 26 subjects (11 males, 15 females) with upper limb reduction deficiency or amputation and myoelectric prosthetic hands were video-taped during a regular clinical visit for ACMC. Participants' ages ranged from 2 to 40 years.

METHODS: After instruction, 3 occupational therapists with no, 10 weeks' and 15 years' clinical experience of myoelectric prosthesis training and follow-up independently rated the 30 ACMC items for each patient. The ratings were repeated after 2-4 weeks. Inter- and intra-rater reliability in items was examined by using weighted kappa statistics and Rasch-measurement analyses.

RESULTS: The mean intra-rater agreement in items was excellent (kappa 0.81) in the more experienced raters. Fit statistics showed too much variation in the least experienced rater, who also had only good (kappa 0.65) agreement in items. The stability of rater calibrations between first and second assessment showed that no rater varied beyond chance (>0.50 logit) in severity. The mean inter-rater agreement in items was fair; kappa 0.60, between the experienced raters and kappa 0.47 between raters with no and 10 weeks' experience.

CONCLUSION: Overall, the agreement was higher in the more experienced raters, indicating that reliable measures of the ACMC require clinical experience from myoelectric prosthesis training.

AIM: To study psychosocial adjustment and mental health in children with upper-limb reduction deficiency and a myoelectric prosthetic hand.

METHODS: Sixty-two parents of children aged 8 to 18 y old answered a questionnaire concerning competence and behaviour/emotional problems in their children. Of the 62 children, 37 adolescents aged 11 to 18 y old answered questionnaires concerning competence, problems and mood state. The results were compared with Swedish normative data. The children were divided into five groups based on degree of myoelectric prosthetic use.

RESULTS: Children with upper-limb reduction deficiency and a myoelectric prosthetic hand showed social competence and behaviour/emotional problems similar to Swedish standardized norms. However, withdrawn behaviour was significantly higher in all children, social competence was significantly lower in girls, and social activities were significantly lower in older children with upper-limb reduction deficiency. There was a significant difference between prosthetic use groups. Non-users had significantly more delinquent behaviour problems than full-time users. There was an interaction between gender and prosthetic use in their affect on competence and behaviour/emotional problems, yielding two contrasting patterns.

CONCLUSION: Children with upper-limb reduction deficiency and a myoelectric prosthetic hand are as well adjusted psychosocially as their able-bodied peers. There are indications, however, of social stigmata related to the deficiency, which have to be considered differently in boys and girls.