The impact of ageing on the health and wellbeing of people with thalidomide embryopathy: a comparison of the health impact with the general population

PurposeAs people living with thalidomide embryopathy (TE) are now entering their seventh decade, we examine the impact of ageing and the prevalence of comorbid health conditions reported in holistic needs assessments (HNAs) by individuals with TE, compare it with an age-matched sample of the general population, and explore the relationship between comorbidities and TE pattern of impairment.Materials and methodsThe HNA categories were mapped and compared to those of the Health Survey for England (HSE) and analysed across four impairment groups (A-D).Results94% (392/415) of individuals with TE residing in the UK participated in the HNA and consented to a secondary analysis of the data. Less than 2% (5/392) reported no comorbidities; 94% reported nervous system problems; including pain, pins and needles and numbness. Individuals with TE reported a significantly greater number of health comorbidities, including musculoskeletal problems, than the age-matched HSE population.ConclusionsIndividuals with TE report significantly more health and well-being concerns than the general population of a similar age. Long-term monitoring is needed to ensure that support and rehabilitation services can meet their evolving needs. People living with thalidomide's teratogenic effects are now entering their seventh decade.As they age, these individuals experience the long-term consequences linked to over-use of certain joints, including musculoskeletal and neuropathic pain.An understanding of the lived experience of TE with increasing age has the potential to inform the planning and provision of adequate and appropriate rehabilitation services moving forward.Adoption of a holistic approach to rehabilitation could help people living with TE to maintain functional independence as they enter their seventh decade.