Health-Related Quality of Life in patients with Non-Surgical Hypoparathyroidism and Pseudohypoparathyroidism

Abstract

Objective

Non-surgical 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.

Design

A cohort study with patients identified from a previously epidemiological study.

Patients

57 patients with Ns-HypoPT and 30 patients with PHP.

Measurements

The 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 post-surgical HypoPT

Results

SF36v2 showed a significantly reduced score in all eight subdomains in patients with NS-HypoPT compared to a norm-based population. PHP patients scored lower in five subdomains. Females were more affected than males. Compared with post-surgical 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<0.05). At the Mental Component Score, patients with Ns-HypoPT, had a lower score compared with post-surgical HypoPT (p<0.01). The overall WHO-5 Well Being Index score was comparable between groups (p=0.45). No differences were seen comparing patients with post-surgical HypoPT and Ns-HypoPT (p=0.68) or post-surgical HypoPT and PHP (p=0.67). A WHO-5 score below 28 indicates depression (NS-HypoPT=7; PHP=3, p=0.71), whereas a score between 28-50 suggesting poor emotional well-being (NS-HypoPT=19; PHP=5, p=0.13). The remaining patients scored above 50 suggesting well-being.

Conclusion

QoL is impaired equally among patients with Ns-HypoPT and PHP.

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