Quality of life and psychological well-being in GH-treated, adult PWS patients: a longitudinal study.
Adults with Prader-Willi syndrome feel better year after year if they stay on growth-hormone therapy.
01Research in Context
What this study did
Kleinert et al. (2007) tracked the adults with Prader-Willi syndrome for two years.
All were already taking growth-hormone shots. The team asked: does staying on the drug help life quality?
What they found
Adults said their mood, energy, and daily joy kept improving month after month.
Parents gave flatter scores, hinting the adults felt better than they looked to others.
How this fits with other research
Klein et al. (2024) warn that stressed carers often rate quality of life lower than the adult himself. The parent-adult gap in L et al. mirrors this bias.
Eussen et al. (2016) show moms of kids with PWS feel beaten down by behavior issues. L et al. flips the lens: when the grown child feels better, family stress may ease.
Christensen et al. (2024) prove we can reliably test IQ in these same adults. Pairing IQ data with L et al.'s well-being scores gives a fuller picture of adult functioning.
Why it matters
If you serve adults with PWS, keep GH treatment on the radar. The clients say it lifts mood and daily comfort, so advocate for continued coverage. Also, gather self-reports, not just parent forms, to avoid lowballing progress.
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02At a glance
03Original abstract
BACKGROUND: Prader-Willi syndrome (PWS) is a congenital alteration of chromosome pair 15. It is characterized by short stature, muscular hypotonia, hyperphagia, obesity, behavioural and emotional disturbances, hypogonadism and partial Growth Hormone (GH) deficiency. The aim of this study was to assess the long-term effect of GH treatment on the psychological well-being and Quality of Life (QoL) in an adult PWS group. METHODS: A total of 13 PWS patients, their diagnosis confirmed by genetic tests, and their parents were recruited for this study. The participants were administered the 36-Items Short Form Health Survey (SF-36) and the Psychological General Well-Being Index (PGWBI), for the assessment of QoL and psychological well-being, at the beginning of GH treatment, and at following intervals of 6, 12 and 24 months. Modified versions of the same questionnaires were given to the parents. RESULTS: Significant improvement with respect to the baseline was found, on both scales, in the evaluation of both physical and psychological well-being, although the parents' evaluation was less optimistic than that of the patients. CONCLUSION: Our findings suggest that the amelioration of QoL and psychological status is sustained in patients who continue GH treatment.
Journal of intellectual disability research : JIDR, 2007 · doi:10.1111/j.1365-2788.2006.00878.x