ABSTRACT
In the context of the 'Mobile Haemophilia Outpatient Care (MHOC)' project we aimed to gather insights into the health-related quality of life (HRQoL), treatment satisfaction (TS) and adherence of persons with haemophilia (PWHs) who get treated at the Saarland University Hospital Haemophilia Treatment Centre (HTC). PWHs were visited at home at least twice (baseline, follow-up) by trained medical staff. Individual interviews were performed to measure patients' HRQoL and TS with validated questionnaires (Haem-A-QoL/Haemo-QoL and Hemo-SatA/Hemo-SatP). Socio-demographic and clinical data were collected. In total, 79 PWHs were enrolled; 56 adults with a mean age of 37.4 ± 16.4 years (17-78) and 23 children [mean age of 9.8 ± 4.2 years (3-16)]. In total, 62% were severely affected; 48.1% received prophylaxis. Patients reported good HRQoL (adults: 23.1 ± 17.1; kids: 24.3 ± 11.1). Patients (M = 11.2 ± 9.5) and parents (M = 14.3 ± 7.4) were very satisfied with their provided treatment. The majority of study participants were evaluated to have a good treatment adherence. After 1-year follow-up of the MHOC, a significant improvement in HRQoL was seen in adults (p < 0.033) and in proxy ratings of parents (p < 0.0001); TS remained high with no change by MHOC intervention. Patients reported good HRQoL and TS. Most of them were evaluated as having a good treatment adherence. After implementation of the MHOC, adult patients reported a better HRQoL. Such a mobile medical care service is considered beneficial for patients, especially with limited access to a HTC.
Subject(s)
Hemophilia A/epidemiology , Medication Adherence/statistics & numerical data , Adolescent , Adult , Aged , Female , Germany , Humans , Male , Middle Aged , Patient Satisfaction , Quality of Life , Rural Population , Treatment Outcome , Young AdultABSTRACT
INTRODUCTION: Regular visits at haemophilia treatment centres (HTCs) in rural regions are often dependent on the access to a private car due to lack of or limited availability of public means. Therefore, a mobile haemophilia outpatient care (MHOC) concept providing home visits to haemophilia patients has been developed by the Saarland HTC, which is located in a rural German region. METHODS: Haemophilia patients and their parents were home visited at least twice (baseline, follow-up) by trained medical staff. Socio-demographic and clinical data were collected and interviews were performed asking the patients and parents about their needs and expectations towards such a MHOC. RESULTS: Seventy-nine patients were enrolled (56 adults, 23 children), 62.0% severely affected, 48.1% on prophylaxis, with a mean age of 37.4 ± 16.4 years (17-78) and 9.8 ± 4.2 years (3-16), respectively. Median travel distance to the HTC was 43.5 km (3-200). Note that 92.4% considered an intense binding to the HTC and a MHOC concept as 'rather/very important' (88.6%). They expected from a MHOC to provide consulting and educating activities, support in elderhood issues and treatment. For 35.4%, a MHOC could currently provide additional support, mainly due to patient's immobility and need of consultancy. They mainly used services in terms of consultancy in social-legal affairs and support in contacting authorities. CONCLUSION: The results of this study support the hypothesis that a MHOC concept is a needful supplement in haemophilia comprehensive care and will improve the challenging haemophilia treatment, especially for those with limited access to HTCs or with disabilities.
Subject(s)
Ambulatory Care/methods , Hemophilia A/therapy , Adolescent , Adult , Aged , Child , Child, Preschool , Disease Management , Feasibility Studies , Female , Follow-Up Studies , Hemophilia A/epidemiology , Humans , Male , Middle Aged , Pilot Projects , Socioeconomic Factors , Young AdultABSTRACT
HISTORY AND CLINICAL FINDINGS: 82-year old male patient suspected of having cerebral hemorrhage under anticoagulation therapy with Dabigatran due to atrial fibrillation. INVESTIGATIONS: CT scan showed bilateral chronic subdural hematomas with fresh blood in left-subdural hematoma and midline shift. Laboratory analysis shows only a moderately high Dabigatran level but thrombin time was high out of range. DIAGNOSIS: Fall-related intracerebral haemorrhage and subdural hematoma under anticoagulation therapy. THERAPY AND COURSE: Neurosurgical hematoma evacuation and trepanation after preoperative use of Idarucizumab as an antidote for Dabigatran to stop anticoagulative effects and secure normal bleeding conditions, led to reduced midline shift. We started heparin-based anticoagulation first followed by Dabigatran again in clinical steady state and after rehabilitation with neurologically low-grade residuals.
