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

Abstract

Background: Clinical studies on the effects of thalidomide-induced damage on thalidomide victims as they age have only recently started to be conducted, but no studies have examined socioeconomic differences in terms of healthcare and social status between thalidomiders and the age-matched general population in Japan. Therefore, we carried out a nationwide survey focusing on the life situations of thalidomiders. Method: Questionnaires were sent to 274 thalidomiders in Japan. The questionnaire items basically matched those of the Comprehensive Survey of Living Conditions (CSLC) in the general population conducted by the Japanese Government. The results were compared with those of the CSLC for individuals aged 55-59 years, which was the cohort most similar in age to the average thalidomider living in Japan. Results: More thalidomiders rated their health condition as relatively bad or bad compared with the general population (20.2% vs. 13.3%, respectively). A much higher percentage of thalidomiders reported having some health or physical problem caused by a disease or injury (68.8% vs. 32.6%, respectively), and thalidomiders reported visiting medical and healthcare-related facilities more frequently. A higher proportion of thalidomiders (9.2%) were unemployed, and thalidomiders tended to feel higher levels of worry and stress, especially in terms of the future. Conclusions: The results of this nationwide survey of the life situations of thalidomiders in Japan clarified their health conditions and the related associations with socioeconomic status. These findings could be expected to help improve the provision of medical and healthcare, welfare measures, and financial support for thalidomiders in the near future. K E Y W O R D Shealth, life situations, nationwide survey, questionnaire, thalidomide embryopathy

Commentary on Markiewicz et al. Age-related changes in patients with upper limb thalidomide embryopathy in the United Kingdom

“…In contrast, other studies found a doubled rate of psychological disorders, including anxiety, worries and stress (Hinoshita et al. 2019; Kowalski et al., 2015).…”

“…In contrast, other studies found a doubled rate of psychological disorders, including anxiety, worries and stress (Hinoshita et al 2019;Kowalski et al, 2015). Chronic pain disorders have recently been found in 94% of over 50-year-olds with TE (Niecke et al, 2022).…”

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

“…The most common presentations are pain, increasing restriction with activities of daily living and nerve-related symptoms, particularly carpal tunnel syndrome ( Ohnishi and Hinoshita, 2017 ). The assessment focuses on the history of the presenting symptoms while taking into account how this affects their broader function, as pain and decreasing joint movement owing to new onset adult symptoms compound existing impairments ( Newbronner and Atkin, 2018 ).…”

Health‐related quality of life after 50 years in individuals with thalidomide embryopathy: Evidence from a German cross‐sectional survey

“…About 3,000–4,000 thalidomide survivors live around the world (Hinoshita et al, 2019), 773 of them in North Rhine‐Westphalia (NRW) in Germany. Today, they undergo secondary diseases as long‐term sequelae of their prenatal acquired impairments (Niecke, n.d.; Newbronner & Atkin, 2018).…”

“…Therefore, thalidomide embryopathy is not only a medical care issue for aging subjects in the northern hemisphere but also a present health threat for young families in the southern hemisphere (Weinrich et al, 2018). About 3,000-4,000 thalidomide survivors live around the world (Hinoshita et al, 2019), 773 of them in North Rhine-Westphalia (NRW) in Germany. Today, they undergo secondary diseases as long-term sequelae of their prenatal acquired impairments (Niecke, n.d.;Newbronner & Atkin, 2018).…”