Middle-aged individuals with thalidomide embryopathy have undergone few surgical limb procedures and demonstrate a high degree of physical independence

Abstract

BackgroundThalidomide is known to have induced thalidomide embryopathy (TE) in more than 10,000 live-born children worldwide between 1957–1962.AimThe aim of this study was to investigate the need for orthopaedic surgery and limb orthosis in relation to function and physical independence in middle-aged individuals with TE.Methods13 women/18 men with a mean age of 45.8 (SD 1.1) years were included. Information about limb surgery, the use of orthotic devices, jobs, accommodation, disability adjustments and personal assistants was collected. Physical function was measured by a modified general function score. The time needed for activities of daily living (ADL) was collected. Individuals with proximal focal femoral deficiency, PFFD, and participants in need of home or work adaptations were compared with the rest of the group.Result31 surgical procedures had been performed in the extremities. Three individuals were in need of personal assistance and seven had disability-adjusted homes. 28 individuals were working and 24 reported participation in exercises. Those with PFFD had significantly lower function score and needed a significantly longer time for ADL in the morning (p = 0.001 and p = 0.032). The group in need of home or work adjustments had significantly lower function score and needed longer time for morning ADL (p = 0.012 and p = 0.009).DiscussionFew orthopaedic procedures had been performed. The TE individuals except the ones with PFFD and those in the need of disability adjustments, were mostly active workers, reported good physical function and participated in exercises, despite limb malformations.

Thalidomide upper limb embryopathy – pathogenesis, past and present management and future considerations

“…It is important to gain a detailed understanding of their level of independence, activities of daily living and support network in order to inform what treatment options might be practical and reliable. A surgical history will be especially relevant as most adults with thalidomide embryopathy will have had some surgery previously, the majority as children ( Ghassemi Jahani et al., 2017 ). They will also present with the standard co-morbidities of any adult of their age, so a thorough past medical and drug history will be essential in assessing the surgical and anaesthetic risks.…”

“…Nerve-related symptoms are one of the commonest presentations in adult thalidomide patients. Carpal tunnel decompression (CTD) is the most common upper limb procedure in adult patients with thalidomide embryopathy ( Ghassemi Jahani et al., 2017 ). Deformity arising from radial longitudinal deficiency, for example extreme wrist flexion may lead to an increased risk of median nerve compression at the wrist ( Figure 5 ).…”

A nationwide survey regarding the life situations of patients with thalidomide embryopathy in Japan, 2018: First report

“…Therefore, the current health statuses of thalidomiders, even in countries with hundreds of thalidomiders, such as Germany, the United Kingdom (UK), and Japan, have seldom been reported, and never fully understood, possibly resulting in inefficient treatments (Newbronner, Glendnning, Atkin, et al, ; Peters et al, ). However, several surveys focusing on the physical or orthopedic situations of thalidomiders have recently been conducted (Ghassemi Jahani et al, ; Ghassemi Jahani et al, ; Ghassemi Jahani, Danielson, Karlsson, & Danielsson, ; Ghassemi Jahani, Danielsson, Karlsson, & Brisby, ; Kowalski, Sanseverino, Schuler‐Faccini, et al, ). For example, one recent study focused mainly on lifestyle‐related diseases among middle‐aged thalidomiders (Shiga, Shimbo, & Yoshizawa, ), while a few others investigated internal organ and vascular anomalies using imaging screening (Tajima, Wada, & Yoshizawa, ; Weinrich et al, ).…”