Health-related Quality of Life and Function in Middle-aged Individuals with Thalidomide Embryopathy

Overview

Journal J Child Orthop

Publisher Sage Publications

Specialty Pediatrics

Date 2016 Nov 18

PMID 27854003

Citations 5

Authors

Shadi A Ghassemi Jahani

Jon Karlsson

Helena Brisby

Aina J Danielsson

Affiliations

Soon will be listed here.

Abstract

Objectives: The 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.

Methods: Thirty-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).

Results: The 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.

Conclusion: The 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 Evidence: IV.

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

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

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

Newbronner E, Glendinning C, Atkin K, Wadman R PLoS One. 2019; 14(1):e0210222.

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