Quality of life and treatment burden of children receiving daily growth hormone treatment in Greece.

PURPOSE

This study aimed to assess the paediatric growth hormone deficiency burden in Greek patients and their caregivers regarding the health-related quality of life (HRQoL), impact of recombinant human growth hormone (rhGH) treatment, and disease management.

METHOD

In this cross-sectional study, Quality of Life in Short Stature Youth (QoLISSY) and Life Interference for GHD (LIQ-GHD) questionnaires were administered to both patients with pGHD aged 4-17 years receiving rhGH for minimum 12 months and their caregivers.

RESULTS

This study included 250 patients and their caregivers. The mean ( ± SD) total QoLISSY scores were 80.93 (±14.63) and 76.32 (±17.68) reported by patients and caregivers, respectively. Patients ≥ 8 years scored higher in total and emotional domains compared to caregivers, whereas the treatment domain was lower in patients > 12 years versus caregivers. Ease of injection schedule, life interference, and willingness to continue LIQ-GHD domains mainly comprised treatment burden, with mean (±SD) scores of 19.88 (±22.02), 19.36 (±18.39) and 19.25 (±19.60), respectively. Treatment adherence in the overall population was satisfactory. Patients ≥ 8 years missed more injections than younger individuals.

CONCLUSION

A good HRQoL and a mild treatment burden were reported by Greek patients receiving daily rhGH and their caregivers; however, variability was observed within children's and caregivers' groups. Considering the decreased compliance during adolescence, emphasis should be given to consultations with patients and caregivers to identify issues and address them accordingly. Finally, there is a need to consider alternative treatment regimens which could improve adherence.