ESPE Abstracts

Introduction: The EQ5D questionnaire is an openly available, validated, age-specific and generic measure of quality of life (QoL) which takes less than 5 minutes to complete. A higher dimension score and a lower visual analogue scale (VAS) is associated with worse QoL. Our aim was to use this tool to assess the QoL of patients with a wide range of paediatric endocrine conditions in the routine clinical setting.

Methods: Between October 2022 and December 2023, 271 eligible patients were identified from 36 clinics, of which 216 (80%) completed a total of 227 age-specific EQ5D questionnaires. Of the 216, 134 were males (62%). Additional data were collected to assess presenting complaint (PC), socioeconomic deprivation in Scotland (SIMD), clinic outcome and number of encounters and specialties involved in the patient’s care within the preceding 12 months. The PCs were coded in 12 disorder groups: growth, puberty (early and late), thyroid, excess weight, DSD, pituitary, adrenal, bone mineral metabolism, oncology, gynaecology and other.

Results: The median age of the 134 patients was 11.7 yrs (10^th,90^th: 5.6, 16). The median VAS score was 90/100 (65,100) whilst the median dimension score was 6/15 (5,10) for <16yrs and 7/15 (5,9) for >16yrs. The median SIMD was 4 (1,9) with 1 indicating worse socioeconomic deprivation. The VAS score was negatively associated with the dimension score with the strongest correlation in >16yrs group, (r,-0.64, P = 0.002). In this group, females and males also had a different dimension score of 8 and 6, respectively (P <0.01). The best VAS and Dimension scores were reported in the Early Puberty group at 99/100 and 5/15 respectively while the worst VAS and Dimension scores were reported in the Excess Weight group at 77.5/100 and 8/15, respectively. In a multivariate analysis, the number of specialties involved over the previous year was negatively associated with the VAS score (P = 0.001) and positively associated (P <0.001) with the dimension score. The median number of specialities and encounters were 2 (1,4) and 2 (1,7) respectively. Examples of specific conditions that had a high number of specialities included astrocytoma, CHARGE syndrome, morbid obesity and bilateral undescended testes.

Conclusions: The use of the EQ5D in the routine clinical setting shows its feasibility and clear association with burden of illness as reflected by the complexity of the condition. EQ5D may represent a useful generic tool for the routine assessment of QoL in paediatric endocrinology.