Abstract
A suboptimal quality of life (QoL) has been reported in patients with Graves' disease treated in adult life, but long-term QoL in those treated in childhood and adolescence is unclear. We wanted to understand how Graves' disease and its management impact on the physical, psychological and social well-being of young people and their longer-term QoL. Two questionnaires were used to assess QoL and patient experience of Graves' disease; PedsQL™ Generic Core Scales and a Graves' disease questionnaire devised for this project. The anonymized questionnaires were sent to young people (<30years) diagnosed with Graves' disease in childhood and adolescence and managed at a tertiary paediatric endocrine unit in the North of England. Respondent QoL scores were compared with a healthy UK cohort. Questionnaires were sent to 51 young people, and 26 responded (51%). Graves' patients reported a lower total QoL score compared with the healthy cohort (p=.003). This was particularly apparent in the psychosocial domain (p=.0016). No patient regretted having definitive treatment (surgery/radioiodine), and all said they would recommend it to others. Half of those who had received definitive treatment still did not feel recovered. There was no difference in the long-term QoL in those who did/did not receive definitive treatment (p=.40). This study highlights short- and long-term impacts on the QoL and general well-being of young people with Graves' disease. There were no regrets regarding the choice of definitive treatment. This information will help inform the counselling of patients and their families.
Highlights
The most common cause of hyperthyroidism in childhood is Graves’ disease.[1]
Graves’ disease is an autoimmune disorder where antibodies to the thyroid-stimulating hormone (TSH) receptor on the thyroid gland result in excess thyroid hormone production
Graves’ disease patients had an overall lower total health-related quality of life (HRQOL) (P = .003), with lower scores reported in both psychosocial (P = .0016) and physical functioning (P = .029) (Figures 2 and 3)
Summary
The most common cause of hyperthyroidism in childhood is Graves’ disease.[1]. Graves’ disease is an autoimmune disorder where antibodies to the thyroid-stimulating hormone (TSH) receptor on the thyroid gland result in excess thyroid hormone production. There is a paucity of data documenting the experience of the younger patient with Graves’ disease and the impact of this condition on their longer-term QoL This quality improvement project set out to understand how the diagnosis of Graves’ disease and its treatment is perceived by the young person and to use established measures to assess their QoL. The Graves’ disease–‘specific’ questionnaire, devised as part of this project, collected anonymized (non-identifiable) demographic information including age, sex and current education/occupation It included health information such as the impact of Graves’ disease on mental well-being and enjoyment of life, which treatments had been received and their satisfaction with this treatment, including any definitive treatment that may have been undertaken (surgery or RI). The questionnaire was developed by LL, JR and TC with feedback obtained from two patients with Graves’ disease and their suggestions incorporated prior to finalization (Appendix A)
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