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Upper limb deficiencies in Swedish children: a comparison between a population-based and a clinic-based register
Limb Deficiency and Arm Prosthesis Centre, Orebro Medical Centre Hospital, S-701 85 Orebro, Sweden; Karolinska Insititute, Stockhom, Sweden.ORCID iD: 0000-0003-4247-2236
Örebro University, Department of Business, Economics, Statistics and Informatics. Limb Deficiency and Arm Prosthesis Centre, Orebro Medical Centre Hospital, S-701 85 Orebro, Sweden.
Limb Deficiency and Arm Prosthesis Centre, Orebro Medical Centre Hospital, S-701 85 Orebro, Sweden.
2001 (English)In: Early Human Development, ISSN 0378-3782, E-ISSN 1872-6232, Vol. 63, no 2, p. 131-144Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2001. Vol. 63, no 2, p. 131-144
National Category
Surgery Orthopaedics
Research subject
Orthopaedics
Identifiers
URN: urn:nbn:se:oru:diva-27830DOI: 10.1016/S0378-3782(01)00163-3ISI: 000169376200007PubMedID: 11408102Scopus ID: 2-s2.0-0034983416OAI: oai:DiVA.org:oru-27830DiVA, id: diva2:609043
Available from: 2013-03-04 Created: 2013-03-04 Last updated: 2018-01-11Bibliographically approved
In thesis
1. Upper limb reduction deficiencies in Swedish children: classification, prevalence and function with myoelectric prostheses
Open this publication in new window or tab >>Upper limb reduction deficiencies in Swedish children: classification, prevalence and function with myoelectric prostheses
2004 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Upper limb reduction deficiency (ULRD) is a rare condition that has been known ever since the 6th century B.C. This is a lifelong deficiency which in an afflicted child can lead to practical limitations, social restrictions and physical problems. The overall aim of this research was to increase the knowledge about children with upper limb reduction deficiencies from three perspectives: the deficiencies themselves, the use of prostheses and the well being of the affected children. To validate information regarding ULRD in the Swedish Register for Congenital Malformations (SRCM), all infants reported to this register during 1973-1987 were re-classified according to a more detailed classification. The result was compared with a clinic-based register at the Limb Deficiency and Arm Prostheses Centre in Örebro, Sweden. The findings 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 presence of scoliosis and trunk asymmetry was studied in 60 persons with transverse ULRD. Nineteen persons (31%) had a scoliosis of between 10 and 19º and 30 persons had minor curves of between 5 and 10º. There was a significant correlation between leg length inequality and side of the convexity, with the convexity directed towards the side of the shorter leg in 21 of 28 persons. This indicates that children with transverse ULRD may have a transient scoliosis of postural origin of no clinical significance.

A new observation-based test, the Assessment of Capacity for Myoelectric Control (ACMC), which measures a person’s capacity to control a myoelectric prosthetic hand during the performance of ordinary daily tasks, was developed. Occupational therapists completed 210 assessments of 75 persons. Rasch rating scale analysis was used for validation and reliability estimations. The results demonstrate internal scale and person response validity.

The external reliability of ACMC was established by scorings from three raters with different degrees of experience on 27 videotapes of client performance. The major finding in this study was that in order to obtain reliable measures from the ACMC the raters have to have some experience of this group of clients. Until the ACMC can adjust for rater severity, the same rater should perform the ACMC when it is used for follow-up or clinical trials.

In a study of 62 children we found that, overall, children with ULRD who have been fitted with a myoelectric prosthetic hand are just 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. Most children who have been provided with a myoelectric prosthesis at an early age continue to use the prosthesis.

Place, publisher, year, edition, pages
Stockholm: Karolinska institutet, 2004. p. 43
Keywords
children, upper limb, deficiency, register validation, scoliosis, arm prosthesis, measurement, occupational therapy, psychopathology, depression
National Category
Pediatrics
Research subject
Medicine
Identifiers
urn:nbn:se:oru:diva-27809 (URN)91 -7140 - 091 - 5 (ISBN)
Public defence
(Swedish)
Opponent
Supervisors
Available from: 2013-03-04 Created: 2013-03-01 Last updated: 2017-10-17Bibliographically approved

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Hermansson, LiselotteBodin, Lennart

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