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Upper limb reduction deficiencies in Swedish children: classification, prevalence and function with myoelectric prostheses
Institutionen för kvinnors och barns hälsa, Karolinska institutet.ORCID iD: 0000-0003-4247-2236
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 [en]
children, upper limb, deficiency, register validation, scoliosis, arm prosthesis, measurement, occupational therapy, psychopathology, depression
National Category
Pediatrics
Research subject
Medicine
Identifiers
URN: urn:nbn:se:oru:diva-27809ISBN: 91 -7140 - 091 - 5 (print)OAI: oai:DiVA.org:oru-27809DiVA, id: diva2:608804
Public defence
(Swedish)
Opponent
Supervisors
Available from: 2013-03-04 Created: 2013-03-01 Last updated: 2017-10-17Bibliographically approved
List of papers
1. Upper limb deficiencies in Swedish children: a comparison between a population-based and a clinic-based register
Open this publication in new window or tab >>Upper limb deficiencies in Swedish children: a comparison between a population-based and a clinic-based register
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.

National Category
Surgery Orthopaedics
Research subject
Orthopaedics
Identifiers
urn:nbn:se:oru:diva-27830 (URN)10.1016/S0378-3782(01)00163-3 (DOI)000169376200007 ()11408102 (PubMedID)2-s2.0-0034983416 (Scopus ID)
Available from: 2013-03-04 Created: 2013-03-04 Last updated: 2018-01-11Bibliographically approved
2. Scoliosis and trunk asymmetry in upper limb transverse dysmelia
Open this publication in new window or tab >>Scoliosis and trunk asymmetry in upper limb transverse dysmelia
1997 (English)In: Journal of Pediatric Orthopaedics, ISSN 0271-6798, E-ISSN 1539-2570, Vol. 17, no 6, p. 769-72Article in journal (Refereed) Published
Abstract [en]

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.

National Category
Orthopaedics Surgery
Research subject
Orthopaedics
Identifiers
urn:nbn:se:oru:diva-27825 (URN)10.1097/00004694-199711000-00013 (DOI)A1997YH42400013 ()9591980 (PubMedID)2-s2.0-0031405891 (Scopus ID)
Available from: 2013-03-04 Created: 2013-03-04 Last updated: 2018-01-11Bibliographically approved
3. Assessment of capacity for myoelectric control: a new Rasch-built measure of prosthetic hand control
Open this publication in new window or tab >>Assessment of capacity for myoelectric control: a new Rasch-built measure of prosthetic hand control
2005 (English)In: Journal of Rehabilitation Medicine, ISSN 1650-1977, E-ISSN 1651-2081, Vol. 37, no 3, p. 166-71Article in journal (Refereed) Published
Abstract [en]

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.

National Category
Surgery Orthopaedics
Research subject
Orthopaedics
Identifiers
urn:nbn:se:oru:diva-27826 (URN)10.1080/16501970410024280 (DOI)000229479000007 ()16040474 (PubMedID)
Available from: 2013-03-04 Created: 2013-03-04 Last updated: 2018-01-11Bibliographically approved
4. Intra- and inter-rater reliability of the assessment of capacity for myoelectric control
Open this publication in new window or tab >>Intra- and inter-rater reliability of the assessment of capacity for myoelectric control
2006 (English)In: Journal of Rehabilitation Medicine, ISSN 1650-1977, E-ISSN 1651-2081, Vol. 38, no 2, p. 118-23Article in journal (Refereed) Published
Abstract [en]

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.

National Category
Orthopaedics Surgery
Research subject
Orthopaedics
Identifiers
urn:nbn:se:oru:diva-27827 (URN)10.1080/16501970500312222 (DOI)000236049600007 ()16546769 (PubMedID)
Available from: 2013-03-04 Created: 2013-03-04 Last updated: 2018-01-11Bibliographically approved
5. Psychosocial adjustment in Swedish children with upper-limb reduction deficiency and a myoelectric prosthetic hand
Open this publication in new window or tab >>Psychosocial adjustment in Swedish children with upper-limb reduction deficiency and a myoelectric prosthetic hand
2005 (English)In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 94, no 4, p. 479-88Article in journal (Refereed) Published
Abstract [en]

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.

National Category
Surgery Orthopaedics
Research subject
Orthopaedics
Identifiers
urn:nbn:se:oru:diva-27824 (URN)10.1080/08035250410022512 (DOI)000228451400018 ()16092464 (PubMedID)2-s2.0-16844384199 (Scopus ID)
Available from: 2013-03-04 Created: 2013-03-04 Last updated: 2018-01-11Bibliographically approved

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Hermansson, Liselotte M. N.

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