title: Quality of life and retrospective perception of the effect of growth hormone treatment in adult patients with childhood growth hormone deficiency.
abstract: Divergent findings on the quality of life (QoL) and the psychosocial functioning of adults treated during childhood with growth hormone (GH) because of GH deficiency (GHD) have been reported. In the present study we evaluated the QoL and the perception of the effect of former GH treatment in Belgian young adults with childhood GHD. Thirty-six patients (22 males) were included in the study. They all were treated during childhood with GH for GHD. QoL was evaluated with a standardised questionnaire: the Quality of Life Assessment of Growth Hormone Deficiency in Adults (QoL-AGHDA). Psychosocial functioning, sexual experience and schooling were evaluated by semi-structured interviews and questionnaires. The influence of gender, type of hormone deficiency (isolated GHD vs multiple pituitary hormone deficiencies [MPHD]), age at the start of GH therapy (before 12 yr vs after 12 yr) and the height deficit at the start of GH therapy (< -3 SDS vs > -3 SDS) were studied. In addition, the patients' and parents' perception of height and of the effect of GH treatment was retrospectively evaluated by semi-structured interviews. Age (mean +/- SD) at the time of evaluation was 20.0 +/- 1.3 yr and final height was -0.5 +/- 0.9 SDS, comparable to mid-parental height (-0.6 +/- 0.8 SDS). The QoL-AGHDA score was 9 +/- 6. About half of the patients, especially those in whom GH treatment was started after the age of 12 years, complained of retrospective difficulties with self-confidence and social contact, and about one-quarter of the patients had current difficulties with self-confidence, social contact, contact with the opposite sex and with emotional life. Only 44% of the patients had had sexual intercourse--none of those with MPHD. According to the parents, the patients had and still have more difficulties with self-confidence and social contact than their siblings and/or peers, and they needed and still need more emotional support. In one out of four patients the parents expected difficulties in finding a job, in one out of three patients parents expected difficulties in leaving home or in having a stable relationship. The educational level of patients with a height deficit < -3 SDS at start of GH therapy was lower than in patients with a height deficit > -3 SDS. According to the parents, about half of the patients, especially those with MPHD, had more study problems compared to siblings. In all patients, satisfaction with final height and GH therapy was obvious. In conclusion, the psychosocial outcome of young adults with childhood GHD was more satisfying than in previous studies. This could be due to a more adequate GH treatment with better final height results. Nevertheless, more difficulties with respect to psychosocial functioning were observed in patients with MPHD, in patients in whom GH treatment was started after 12 years of age and in patients with a height deficit < -3 SDS at the start of GH therapy, underlining the need for early diagnosis and treatment of childhood GHD, and of continuing medical follow-up and psychosocial counselling, particularly in these subgroups of patients with GHD.
authors.affiliation: The Belgian Study Group for Paediatric Endocrinology Unit, Brussels.
authors.forename: K
authors.initials: K
authors.lastname: Lagrou
authors.forename: D
authors.initials: D
authors.lastname: Xhrouet-Heinrichs
authors.forename: G
authors.initials: G
authors.lastname: Massa
authors.forename: M
authors.initials: M
authors.lastname: Vandeweghe
authors.forename: J P
authors.initials: JP
authors.lastname: Bourguignon
authors.forename: J
authors.initials: J
authors.lastname: De Schepper
authors.forename: F
authors.initials: F
authors.lastname: de Zegher
authors.forename: C
authors.initials: C
authors.lastname: Ernould
authors.forename: C
authors.initials: C
authors.lastname: Heinrichs
authors.forename: P
authors.initials: P
authors.lastname: Malvaux
authors.forename: M
authors.initials: M
authors.lastname: Craen
mesh_terms: D000293:Adolescent; D000328:Adult; D005260:Female; D006128:Growth / Q000502:physiology; D006130:Growth Disorders / Q000188:drug therapy* / Q000473:pathology / Q000523:psychology; D019382:Human Growth Hormone / Q000172:deficiency* / Q000627:therapeutic use*; D006801:Humans; D008297:Male; D011627:Puberty / Q000502:physiology; D011788:Quality of Life; D012574:Schools; D012919:Social Behavior; D016896:Treatment Outcome
chemical_list: D019382:Human Growth Hormone