Psychosocial quality of life in hereditary haemorrhagic telangiectasia patients

Abstract

The aim of this study was to evaluate psychosocial quality of life (PQoL) in patients with Hereditary Haemorrhagic Telangiectasia (HHT). A retrospective study was performed on PQoL in HHT patients presenting with epistaxis. One hundred fifteen patients were interviewed using a questionnaire designed by two sociologists and a head and neck surgeon. Changes over time were assessed according to information on psychosocial well-being, social life, family support, occupation, and medical and demographic data regarding age, gender and patient appearance. Analysis of Psychosocial Quality of Life (PQoL) revealed no statistical difference in relation to gender, marital status, household income or place of residence (rural or urban); however, a significant difference was observed with age. Elderly patients had a poorer PQoL than younger patients. Workers had a better PQoL than unemployed patients. Epistaxis and professional duties were correlated: workers with less than one episode of epistaxis per month were more active. Frequent episodes of epistaxis and abundant bleeding decreased PQoL. These patients felt different and often experienced a desire to withdraw compared to others. Epistaxis in hereditary haemorrhagic telangiectasia patients was associated with the impairment of many PQoL criteria, together with relationship modifications.