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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-Sat A /Hemo-Sat P ). 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., Competing Interests: S.v.M. received travel expenses from UKS in the frame of the project grant. H.E. and C.S. received travel expenses from Baxter Deutschland GmbH pertaining to the project. S.H. and N.G. have nothing to disclose., (Thieme. All rights reserved.)

Aim:  Since the U.S. adherence instruments VERITAS-PRO and VERITAS-PRN were developed in another healthcare system, we assumed that they are not appropriate for the German solidarity healthcare system. This study aims to evaluate the relevance of these instruments for the German healthcare system both by people with hemophilia (PWH) and by healthcare professionals (HCP)., Methods:  A total of 50 PWH (23 adult hemophilia patients and 27 parents of children with hemophilia) and 25 HCP rated the relevance of the single items of the VERITAS-PRO and VERITAS-PRN on a 5-point Likert scale. In addition, both groups were asked to make suggestions for additional adherence questions. To investigate the relevance of these instruments, the accordance between the raters' evaluations was determined calculating the content validity index (CVI) and the content validity ratio (CVR) based on the critical values of the CVR (CVR critical ) to exclude chance and subjectivity., Results:  CVI (CVR) calculations revealed three (5) "very important" items for PWH and six (11) items for HCP. Only two (3) "very important" items were evaluated by both groups. Four domains were considered not important by both groups. Six PWH made 14 suggestions and 14 HCP made 24 suggestions for additional adherence questions., Conclusion:  VERITAS-PRO and VERITAS-PRN have only very limited benefits for the German healthcare system. Since nonadherence has a great impact on the morbidity of PWH and on the costs for the healthcare system, there is a need for adherence instruments that are adapted to the specific needs of PWH in the German healthcare system., Competing Interests: Disclosure The authors report no conflicts of interest in this work., (Thieme. All rights reserved.)

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., Competing Interests: Disclosure The authors report no conflicts of interest in this work., (Georg Thieme Verlag KG Stuttgart · New York.)

The impact of inherited bleeding disorders on the socioeconomic status (SES) of affected individuals is not clear. The SES of adult patients with congenital bleeding disorders (PWBD) from a centre in Germany (age 42.3 ± 15.0 years) was compared to that of a gender- and age-matched control group of patients with thrombophilia or a thrombotic event (PWT). Patients completed a questionnaire including aspects of SES, impact of the disease on their lives, and health-related quality of life (HRQoL). Forty-five patients were enrolled in each group; 71 % of PBWD had a severe form of the bleeding disorder (FVIII/IX activity < 1 % or VWD type 3), and 60 % of all PWBD were treated on-demand. PWBD had a lower monthly income ( p  = 0.029) and a worse occupational status ( p  = 0.047) than PWT, but there was no difference regarding the project-specific SES index. PWBD also reported a worse HRQoL in the physical summary component score of the SF-36 ( p  < 0.001). More PWBD (69.8 %) reported a high impact of the disease on their lives than PWT (33.3 %, p  < 0.001). In summary, PWBD had a worse occupational status, monthly income, health behaviour, HRQoL, and impact of the disease on their lives compared to PWT, but not a significantly different SES in general., Competing Interests: Disclosure The authors report no conflicts of interest in this work., (Georg Thieme Verlag KG Stuttgart · New York.)