Psychosocial quality of life in hereditary haemorrhagic telangiectasia patients

Abstract

Objectives: The aim of this study was to evaluate psychosocial quality of life (PQoL) in patients with Hereditary Haemorrhagic Telangiectasia (HHT).

Study design and setting: 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.

Results: 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.

Conclusion: Epistaxis in hereditary haemorrhagic telangiectasia patients was associated with the impairment of many PQoL criteria, together with relationship modifications.