Quality of life in adult patients with haemophilia – a single centre experience from Sweden

Abstract

Increased or maintained health and quality of life (HRQoL) are essential goals in health care among patients with a chronic disease. To gain an understanding of HRQoL in patients with haemophilia at the Haemophilia Treatment Centre in Malmö, Sweden, patients seen from 2004-2008 were asked to complete the Short form Health Survey, SF-36, also answering to what extent haemophilia, physically and mentally, interferes with their daily life at their annual check-up. Data were extracted from the UMAS Haemophilia Database. Interference of haemophilia in daily life was estimated using a Visual Analogue Scale. A total of 105/144 haemophilia patients were included in the study (73%); 28 mildly, 21 moderately and 56 severely affected. The median age of patients at study entry was 44.0 years (range 18-84 years). The comparison of SF-36 data of Swedish haemophilia patients with the general Swedish male population yielded no significant differences in age groups 15-24, 25-34 and 65-74 years. Patients in age groups 35-44 years, 45-54 years and 55-64 years were significantly impaired in some of their HRQoL domains. For severely affected patients who filled in SF-36 over a period of 5 years no statistical differences in HRQoL were found. For patients undergoing orthopaedic surgery HRQoL increased in most SF-36 domains. Patients reported in general on the VAS that they feel 'somehow' interfered in their daily life due to haemophilia. The results indicate a need for continuous monitoring of HRQoL to identify an increased need of care in the ageing haemophilia population.

Longitudinal Changes in Health-Related Quality of Life for Chronic Diseases: An Example in Hemophilia A

“…However, none has attempted to describe the effects of changes in the frequency of symptoms or clinical status on HrQoL. [3][4][5] Over 18 months, Gringeri et al 3 found that HrQoL remained stable in a group of 41 hemophilia A and B patients with inhibitors when measured at 6-month intervals; they therefore reported only baseline HrQoL results. Similarly, over a 5-year period with annual follow-up, Lindvall et al 4 found no statistically significant changes in HrQoL among a group of ten patients with severe hemophilia.…”

“…[3][4][5] Over 18 months, Gringeri et al 3 found that HrQoL remained stable in a group of 41 hemophilia A and B patients with inhibitors when measured at 6-month intervals; they therefore reported only baseline HrQoL results. Similarly, over a 5-year period with annual follow-up, Lindvall et al 4 found no statistically significant changes in HrQoL among a group of ten patients with severe hemophilia. Solovieva 5 observed a statistically significant improvement in physical functioning in mild and moderate hemophilia patients and a statistically significant reduction in vitality in severe hemophilia patients on the SF-36 scale over 3 years.…”

Ocena poziomu jakości życia chorych na hemofilię

“…[32] oraz Lindvall i wsp. [33] zajmujący się problematyką hemofilii, zaobserwowali, że wcześniejsze rozpoczęcie profilaktyki wpływa korzystnie na jakość życia, zwłaszcza w dziedzinie fizycznej i relacji społecznych. Później-sze badanie Khawaji i wsp.…”

The Influence of HIV, HCV and Inhibitors on the Quality of Life and Behavior of the Disease in Patients with Haemophilia: An Observational Study

“…Talaulikar et al [7] observed that, for patients with haemophilia (PWH), the perceived quality of life is lower than that for healthy people; other studies [8], however, did not find such differences, except in certain domains (functioning and physical role, especially) and depending on the patients' age range. One aspect that makes this perception worse is the appearance of antibodies to the FVIII/ FIX concentrates (inhibitors); these are currently the most serious complication in the treatment of haemophilia.…”

“…The results are, however, very heterogeneous, depending on the size of the sample, the age of patients, the measuring instruments used and the patients' musculoskeletal disorders [17,18]. The comorbidities associated with haemophilia, such as HIV and HCV, should also be taken into account [8,19].…”