ESPEYB17 15. Editors’ choice (1) (18 abstracts)
15.12. A value-based healthcare approach: Health-related quality of life and psychosocial functioning in women with Turner syndrome
van den Hoven AT , Bons LR , Dykgraaf RHM , Dessens AB , Pastoor H , de Graaff LCG , Metselaar MR , Kneppers-Swets A , Kardys I , Mijnarends H , Zweerus F , Hazelzet JA , Utens EMWJ , van den Bosch AE & Roos-Hesselink JW
To read the full abstract: Clinical Endocrinology 2020;92:434–442.
The authors developed and applied questionnaires to capture various aspects of health-related quality of life (HR-QoL) and psychosocial functioning in a large cohort of adult women with Turner syndrome (TS). Women with TS reported a lower HR-QoL, perceived more stress and experienced increased fatigue compared to the general population. They found a relationship between HR-QoL and non-cardiac comorbidities (diabetes and orthopedic complaints).
In addition to the physical disorders in TS, HR?QoL these women are also affected by mild neuropsychological deficits, such as relative weaknesses in visual?spatial, executive and social cognitive domains. Additionally, other factors such as infertility, lower socioeconomic status or impaired ability to work may affect QoL in TS women.
This study aimed to investigate various aspects of HR-QoL and psychosocial functioning in 201 women with TS (age 34 ± 12 years) to establish new possible targets for therapy. Women with TS reported a lower HR-QoL, which was related to physical factors, such as diabetes and orthopedic complaints. They perceived more stress and experienced increased fatigue. Women with TS were less content with their weight, waist, build, and figure. Also, reflected in this questionnaire, is the discontent with their energy levels. Women with TS also frequently reported concerns about the future, often related to their education or work. Value-based healthcare means aiming at improving outcomes that really matter to patients. The authors suggest that the extreme fatigue may partially be explained by the mismatch that women with TS experience between what is expected of them by themselves and their environment and what they are capable of doing. This may result from the impaired concentration and attention leading to impaired executive function and subsequent fatigue.
The authors claim that perceived stress and increased fatigue should be considered targets for intervention for improvement of HR-QoL in TS women (see also paper 15.13).
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ESPE Yearbook of Paediatric Endocrinology
ISSN 1662-4009 (Online)
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