Confronting the psychological burden of haemophilia

Abstract

Providing comprehensive care, counselling and support to haemophilic patients, and their parents have always been quite complex for haemophilia treatment centres. Nowadays, starting with recent developments in genetic counselling, prenatal diagnosis and carrier testing, the psychological burden on patients and parents might possibly have increased, compared with even the recent past. The emotional strains and worries associated with a possibly affected newborn and his care through childhood and adolescence may also have a grievous impact on couple dynamics and marital relationship. The impact may be even higher in families in which haemophilia is newly diagnosed. The main psychological problems faced by parents and then by affected individuals are herein chronologically reviewed, starting from genetic counselling before conception through childhood, adolescence and adulthood. Aware of the psychosocial burden on patients and their families associated with haemophilia, from prenatal diagnosis and carrier testing until later stages of life of the affected individual, a board of Italian haemophilia specialists and psychologists is designing and organizing an innovative network of psychological support services in some Italian haemophilia centres and promoting specific educational programmes in this setting.

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

“…Therefore, a good therapeutic alliance with the patient must be accompanied by assessment and counselling in other aspects including satisfaction, perceived difficulties and barriers, and emotional needs. Raising awareness of this will result in the patient benefiting from the recent improvements in treatments .…”

“…Haemophilia is a condition usually diagnosed during childhood, and psychosocial aspects of the early years have attracted much attention in the literature. Many authors , including our group , have addressed the psychological impact of the disease, and the necessary support for the family and young patient as he experiences growing up with haemophilia from infancy, through childhood and adolescence . However, the issues of adults or ageing persons with haemophilia (PWHs) have been less frequently discussed.…”

Physical and psychosocial challenges in adult hemophilia patients with inhibitors

“…A global survey found that overall compliance rates declined in an age-related manner, with the lowest rate at 36% in those aged 19–58 years 54. Other major barriers to adherence include patient failure to understand treatment benefits, patient denial, poor venous access, lack of family support, lifestyle interference, teenage rebellion, time constraints, relief or disappearance of symptoms, and forgetfulness 54,55…”

The cost of severe haemophilia in Europe: the CHESS study

“…The psychological, societal, and economic burden of haemophilia has been documented for a number of European countries [13–17]; few studies have taken a standardised methodology across multiple countries simultaneously [18], and sought to amalgamate all three levels of burden for severe disease. The overall aim of the CHESS study was to capture the annualised economic and psychosocial burden of severe haemophilia in the EU5.…”