Life experience of the adult and ageing patient with haemophilia. Practical aspects for psychological support

Abstract

This article discusses, from a psychological perspective, the life experience of the adult and ageing person with haemophilia, including psychological issues, aspects of his personal and social integration, decision-making, communication and other factors that may affect treatment adherence and quality of life. The aim was to provide haematologists and healthcare staff with knowledge and resources to improve communication and support for adult persons with haemophilia, and raise awareness on psychosocial issues related to quality of life, sexuality and aspects associated with ageing with haemophilia. Adulthood is a period of many personal and social changes, and ageing with haemophilia is a relatively new phenomenon due to increased life expectancy in this population. Patients have to adapt to the disease continuously when facing new expectations, life projects and issues arising with increasing age, so the healthcare team should be ready to provide support. A good therapeutic alliance with the patient must be accompanied by assessment and counselling in aspects including satisfaction, perceived difficulties and barriers, and emotional needs. Raising awareness of all this will result in the patient benefiting from the recent improvements in treatments.