Use and functioning of the affected limb in children with unilateral congenital below-elbow deficiency during infancy and preschool age: A longitudinal observational multiple case study

Opinions of Youngsters with Congenital Below-Elbow Deficiency, and Those of Their Parents and Professionals Concerning Prosthetic Use and Rehabilitation Treatment

“…This helped them reinforce their self-esteem and improve their self-identity. In addition, if prostheses are seen as having no functional gain [8], [13], [46], as being technically unsatisfactory and physically uncomfortable [47]–[49], and sometimes actually hampering effective performance [8] – issues we also found in the present research – the added value of the prosthesis disappears and rejection of it occurs. Interestingly, some of the participants succeeded in embracing acceptance and in using the prosthesis for some daily-life activities and in playing sports, a phenomenon also described in the literature [7], [12].…”

“…It is doubtful that prostheses fulfill these aims, since the rejection rate is high 35–45% [5], while no difference in functionality is seen between prostheses wearers and non-wearers [6], [7]. Furthermore, prosthesis use seems to reduce manipulation, exploration, variation, and adaptation in the daily-life activities of young children with unilateral congenital below-elbow deficiency (UCBED) [8]. By developing compensatory strategies and auxiliary movements using other body parts (e.g., head, legs, and trunk) to perform a task [9], children also tend to be more independent without prostheses [4].…”

Stump sensibility in children with upper limb reduction deficiency

“…Not only stereognosis, but also kinaesthesia, can be affected in children with cerebral palsy (28) and developmental coordination disorders (29,30). A recent study demonstrated a relationship between minor neurological dysfunction and ULRD (14). However, we did not find differences in kinaesthesia between the affected and unaffected sides in URLD, confirming previous results (10).…”

“…Children with a neurological motor disorder were found to have poorer stereognosis than healthy children (13). Because minor neurological disorders have been associated with ULRD (14), it is interesting also to investigate stereognosis in these children. Stereognosis has not yet been investigated in ULRD.…”

Do Patient- and Parent-reported Outcomes Measures for Children With Congenital Hand Differences Capture WHO-ICF Domains?

“…In children who are cognitively impaired or otherwise unable to understand survey items, validated parent-proxy reports are available, and many studies record only parent-reported outcomes data. However, discrepancies between child-and parentreported outcomes have been noted in previous studies with parents either overestimating or underestimating the impact of CHD on their children [2,3,8,10,40,44,55]. One possible way to evaluate the reliability of a proxy report is to administer the exact same PROM in a parallel fashion to both the parental proxy and the child.…”