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.

Health-related quality of life in adults undergoing transthoracic device closure of ventricular septal defect

“…The environmental field exhibited a negative trend with age, which may be related to the natural tendency that an individual's physical fitness declines as he/she gets older. In the dimensions of "role-emotional" and "mental health", older patients seemed to score better than younger patients possibly because their rich life experience enabled them to face disease more calmly [26]. 2.…”

Evaluating the Efficacy of Positive Psychotherapy on Life Expectancy in Students With Hemophilia: A Randomized Controlled Trial

“…By studying the prevalence of major depressive disorder and negative behavioral patterns in children and adolescents with hemophilia, those who were randomly selected, it was found that 36% of them had at least a death wish once in the past 6 months (Ghanizadeh & Balich-Jahromi, 2009). Therefore, psychological support and mental health protection are critical for helping children and adolescents with this chronic disease (Torres-Ortuño, Cid-Sabatel, Barbero, & García-Dasí, 2017). Positive psychotherapy is a cognitive psychological strategy and one of the practical approaches that can be effective to obviate psychological problems of hemophilia, considering the age and characteristics of the patients (Thorn, 2017).…”

Merging into the mainstream: the evolution of the role of point-of-care musculoskeletal ultrasound in hemophilia

“…However, the pathophysiology of HA remains incompletely understood, and the pathways are yet to be fully elucidated. HA remains a critical focus of research and study as this debilitating disease negatively impacts quality of life, physical activity, and bone health of the aging PwH population, whose life span is now comparable to that of the normal population 3 , 4 , 14 – 16 . A gap continues to exist in our ability to detect and impact this sequela at the preclinical or asymptomatic phase when the disease process is early and potentially reversible.…”