A survey of the young person’s experience of Graves’ disease and its management

Abstract

Objective: 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. Design, patients and measurements: 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 (<30 years) 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. Results: 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). Conclusions: 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.