Health-related quality of life in patients with nonsurgical hypoparathyroidism and pseudohypoparathyroidism

ObjectiveNonsurgical hypoparathyroidism (NS-HypoPT) and pseudohypoparathyroidism (PHP) are rare diseases, with a prevalence of 2/100.000 and 1/100.000, respectively. Only few studies on Quality of Life (QoL) among patients with Ns-HypoPT and PHP are available. We aimed to investigate the QoL among patients with Ns-HypoPT and PHP including information about education. DesignA cohort study with patients identified from a previously epidemiological study. PatientsFifty seven patients with Ns-HypoPT and 30 patients with PHP. MeasurementsThe well-validated questionnaires SF-36v2 and WHO-5 Well Being Index. Results compared to norm-based material, disease-specific norm-based material and patients with postsurgical HypoPT ResultsSF36v2 showed a significantly reduced score in all eight subdomains in patients with NS-HypoPT compared with a norm-based population. PHP patients scored lower in five subdomains. Females were more affected than males. Compared with postsurgical HypoPT, Ns-HypoPT and PHP are compatible at most domains. At the domains Physical Function, Social Function and Mental Health, Ns-HypoPT and PHP patients scored significantly lower (P-all<.05). At the Mental Component Score, patients with Ns-HypoPT had a lower score compared with postsurgical HypoPT (P<.01). The overall WHO-5 Well Being Index score was comparable between groups (P=.45). No differences were seen comparing patients with postsurgical HypoPT and Ns-HypoPT (P=.68) or postsurgical HypoPT and PHP (P=.67). A WHO-5 score below 28 indicates depression (NS-HypoPT=7; PHP=3, P=.71), whereas a score between 28-50 suggesting poor emotional well-being (NS-HypoPT=19; PHP=5, P=.13). The remaining patients scored above 50 suggesting well-being. ConclusionQoL is impaired equally among patients with Ns-HypoPT and PHP.