Attitudes of haemophilic patients towards their health and socio‐economic problems in Iran

Abstract

Although new technologies and treatments have improved the quality of life of people with haemophilia, they still face many health and socio-economic problems. We designed this study to identify some of these problems according to patients' attitudes towards efforts to solve them. This cross-sectional study was conducted in Shiraz, southern Iran, during January and May 2010. The participants were 100 patients with haemophilia who were referred to Shiraz Hemophilia Center, a major referral centre in southern Iran. A questionnaire was used to obtain data on the attitudes of haemophilic patients about some of their health and socio-economic problems. Mean age of the patients was 28.2 ± 9.0 (range of 16-67 years). In univariate analysis, disease severity, joint involvement, HCV status, income level and educational level of the patients were found to have possible effect on patients' attitude towards their health and socio-economic problems. However, in multivariate model we found that only income level, educational level and HCV status as independent factors influencing the patients' attitude towards childbearing, employment problems, occupational problems, social and friend relationship and continuing education. Haemophilic patients had many social and health problems, which could be alleviated with interdisciplinary interventions to improve their quality of life. Financial support of these patients should be taken into account to reduce their economic problems. Also, encouraging them and providing facilities to achieve a higher educational level could help them to have a better attitude towards their health and overcome the disease-related problems.

The impact of haemophilia on the social status and the health‐related quality of life in adult Lebanese persons with haemophilia

“…From a social point of view, the two groups did not show any difference in the percentage of marriages, suggesting that Lebanese women have no problem accepting a PWH or that they are unaware of the disease or its complications. Our results contrast with the study made by Mehramiri et al that showed a lower percentage of married PWH compared to the general population (40% vs 54%), this rate depending to a large extent on the degree of joint involvement.…”

“…These results are consistent with those of Barlow et al, who reported that physical limitations have an impact on social, school and work activities. Similarly, an Iranian study showed that in 49% of adult PWH, haemophilia had a negative impact on their education and that the severity of the disease and the number of target joints played an important negative role. Also, in our series, the percentage of PWH having a profession requiring high physical activity (for example a manual worker) was higher than that of the control group (55.9% vs 31.4%).…”

Determining the health‐related quality of life in individuals with haemophilia in developing economies: results from the Brazilian population

“…It is important to remember that haemophilia is almost exclusively a male‐dominated disease, and thus, social pressure towards regular employment tends to be higher, because men are still considered as family providers. However, this social trend has been decreasing with time .…”

The impact of social factors on outcomes in patients with bleeding disorders

“…Patients participating in our study more frequently reported a negative impact of the bleeding disorder on their lives (50%) than patients included in a survey from Scandinavian countries, in which the majority of patients (86%), despite perceived limitations for sporting activities, felt that they had similar chances for profession and career [23]. In an Iranian study on 100 haemophilia patients aged 16-67 (mean age, 28 AE 9 years), 49% reported that haemophilia had a negative impact on education, which correlated with disease severity and number of affected joints [24]. This difference between Scandinavian and other countries may be due to the early and high-dose prophylactic regimens used in Scandinavian countries and the young age of patients investigated (13-25 years), leading to less impact of the disease.…”