Health-related quality of life and function in middle-aged individuals with thalidomide embryopathy

Abstract

ObjectivesThe aim of this study was to evaluate the effect of limb malformations on health-related quality of life (HRQL) and function of the extremities in middle-aged individuals with thalidomide embryopathy (TE). Between 1959 and 1962, approximately 150 children with multiple malformations were born in Sweden following the maternal intake of thalidomide during pregnancy, of whom 100 survived.MethodsThirty-one individuals with TE underwent evaluations of musculoskeletal manifestations by clinical examination. Validated questionnaires were used for the assessment of general HRQL [the 36-Item Short Form Health Survey (SF-36) and the EuroQ Five Dimensions health questionnaire (EQ-5D)]. The function of the upper and lower extremities was evaluated using specific questionnaires (Disabilities of the Arm, Shoulder and Hand scale and Rheumatoid and Arthritis Outcome Score, respectively). The lower limbs were evaluated by computed tomography. The median age of the study group was 46 years, and 42% were females. Twenty-five individuals had malformations of the hand, but 27 had a grip function. Five individuals had severe lower limb malformations. Individuals with at least one extremity with major malformation(s) that affected function (n = 15) were compared with those without (n = 16).ResultsThe physical HRQL for the entire study group [mean 40.6, 95% confidence interval (CI) 35.4–45.8], as evaluated by the Physical Composite Score (PCS) of the SF-36, was significantly lower than the national norm value (population-based norm) of 50.0, and the physical HRQL of the subgroup with major limb malformations (15/31) was even lower (mean 34.6, 95% CI 25.9–43.4). The mental aspects of HRQL, based on SF-36 and EQ-5D scores, were not affected in the entire study group or in the subgroups.ConclusionThe physical quality of life was significantly lower in individuals with TE compared with the general national population, while the mental aspects were not affected.Level of evidenceIV.

Quality of life and pain in patients with thalidomide embryopathy in Japan

“…Similar results were reported by study conducted in Sweden. Ghassemi Jahani et al (2016) reported that the physical aspects of QOL in many of individuals were significantly lower than those of the national reference population, but that the mental aspects of QOL were not significantly affected. Saito (2002) compared patients with TE with different types of disability and they found that total GHQ score was higher in the hearing impaired group in 2000.…”

The health and quality of life of Thalidomide survivors as they age – Evidence from a UK survey

“…Peters et al [11], reported that Thalidomide survivors had a mean aggregate physical score of 29.6 and a mean aggregate mental health score of 47.8. A Swedish study of 31 Thalidomide survivors [40] also found that their physical health related quality of life was significantly lower than the general population, although their mental health related quality of life was similar.…”

The role of teratogens in neural crest development

“…The anti‐emetic capacity of the drug opened another treatment field of this drug for morning sickness in pregnant women. It is estimated that approximately 40% of infants with TE died before their first birthday (Ghassemi Jahani, Karlsson, Brisby, & Danielsson, ).…”