Assessment of caregiver burden in patients diagnosed with haemophilia

: We aimed to evaluate caregiver burden in patients diagnosed with Haemophilia. Materials and Method: We analysed data for 72 patients being followed at a hospital in Turkey. A validated Caregiver Burden Scale questionnaire which had been adapted into Turkish Language was used to evaluate the Caregiver burden in patients diagnosed with Haemophilia. Results: All of our 72 patients included in the study were male with median age of 42 years. The majority of our patients were found to be Haemophila A (83.5%) with a education level of university graduates (44.4%) and were married (73.6%) with children (72.2%) at the time of the study. While 36% of our patients were diagnosed with severe haemophilia, 98.6% of the patients were under treatment. 62.5% of our patients were getting treatment on demand with a frequency of 2 or 3 days per week. Majority of the treatment was self administered by the patients (51.4%) peripherally (98.6%). 44.4% of our patients did have a history of bleeding in the past 12 months. With patients who had a history of bleeding, Bleeding in the joints (36.1%) were recored as the most frequent part of the body with a frequency of more than 5 times per year (33.1%). 73.6% of our patients had no other co-mobidies while with patients who had a history of co-morbidities had other chronic diseases (CAD,CKD..etc) instead of DM and HT. Majority of caregivers who participated in this study were female (86.1%) with a median age of 47.6 years. 33.3% of the caregivers were university graduates and majority of the caregiver was married (88.9%) with children (91.7%). Majority of the caregivers had no history of haemophila patients in their family (93.1%) as well as had no history of children diagnosed with haemophilia (93%). Most of the caregivers were housewives (63.9%) and were not working (76.4%) at the time when the study was conducted. 66.7% of the care givers did not have any co-morbidities and with caregiver who had other co-morbidities, similar results were found with our patients in the study. When Caregiver Burden Scale questionnaire was evaluated 79.2% of the caregivers didn't feel that their relative wanted more help that they needed, 90.3% of caregivers felt that they had enough time for themselves, 83.3% of caregivers didn't have difficulty with family and work responsibilities while caring, 84.7% of caregivers didn't feel uncomfortable, 83.3% of caregivers did not felt angry, 95.8% of caregivers did not felt any negative affect on their 8 relationship with other members of their family or friends, 68.1% of caregivers were afraid of what might happen in the future for the patients, 88.9% of the caregivers did not feel that the patient were dependent on them, 86.1% of the caregivers did feel tense, 94.4% of the caregivers did think their own health was affected, 93.1% of the caregivers felt they were able to live the way they wanted to live, 93.1% of the caregivers did not feel their social life was affected, 93.1% of the caregivers did not feel they weren't comfortable/easily to make friends, 94.4 % of the caregivers did not feel that the patients expect that they were their only source of support, 94.4% of the caregivers did not feel that they did not have enough money, 98.6% of the caregivers did not want anyone else to take the burden, 93.1% of the caregivers felt like they have done the best in caring for the patients. All of the caregivers who participated in the study neither felt like they lost control of their life nor they felt they weren't going to be able to care for the patient and indecision about what needs to be done for the patients. Overall; 91.7% of the caregivers did not experience any difficulty while caring for the patients. In this study, there was no significant difference found in the relationship between Presence of a inhibitors and asking for more help from the caregivers (p=0.366); treatment type and the strained it created on the caregivers (p=0.366); frequency of bleeding and free time of the caregivers(p=1.000); frequency of bleeding and the health status of the caregives(p=0.106); severity of the disease and affect on social life of the caregivers(p=0.070); severity of the disease and econimic burden on the caregivers(p=0.210); frequency of the treatment and negative impact of the caregivers with other family members or friends(p=0.398). But it needs to be highligted that in this study we found out that there was a significat difference between frequency of the bleeding history and the fear on the caregivers(p=0.010); history of bleeding in the past 12 months and the socil life of the caregivers (p=0.036) and family history of haemophilia and the strain it had on the caregivers (p=0.044). Conclusion: In this study we found that, the frequency of bleeding episodes increases the fear on the caregivers, any history of bleeding in the past 12 months had an effect on the social life of the caregivers and family history of haemophilia had strain on the caregivers. İt can be concluded that during follow up of a haemophilia patient with a frequent history of bleeding, family history of haemophilia and bleeding episode in the past 12 months, the caregiver can be emotionally affected and support should be provided to these caregivers. By doing the same study with a large population might yield a more significant results. Keywords: Haemophilia, Caregiver,Burden