Social, Educational, and Vocational Outcomes in Patients with Childhood Onset and Young Adult Onset Growth Hormone Deficiency

Objective Hypopituitarism diagnosed in childhood, adolescence and young adulthood has the potential to affect growth and somatic development. Less is known about the impact of such a diagnosis on other aspects of development. Design An analysis of the KIMS Database (Pfizer International Metabolic Database) was performed to explore social, educational and vocational outcomes of adult patients diagnosed in childhood, adolescence and young adulthood compared with adult-onset controls. Patients 2952 adult patients diagnosed with hypothalamic pituitary conditions before the age of 25 were divided into 2 group: childhood-onset [<16 years (CO)] (n= 1782) and young-adult-onset [16-<25years (YAO)] (n=1170). 1617 adult patients diagnosed with a non functioning pituitary adenoma at the age of 25 or older formed the adult-onset control group (AO). Measurements KIMS Patient Life Situation Form which provided information on: social, educational and vocational outcomes. Results Compared with the AO control group CO and YAO patients were between 4.5 and 8.0 times more likely to live with their parents in adulthood, CO and YAO patients were also less likely to live in partnership and to have children. The impact on educational and vocational outcomes was less marked than on social outcomes with no significant differences compared with the AO control group. Educational and vocational outcomes showed the lowest level in male and female CO and YAO patients who had been previously diagnosed with a brain tumour. Conclusions Social outcomes were more affected than educational and vocational outcomes. Although CO patients are more adversely affected, YAO patients were also failing to achieve social milestones. This has consequences for the delivery of endocrine care in both paediatric and adult services.