Feasibility and Results of a Mobile Haemophilia Outpatient Care Pilot Project.

Abstract

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.

• Authors: Hermann Eichler, Christian Schleicher, Sabine Heine, Norbert Graf, Sylvia von Mackensen
• Journal: Hamostaseologie (Hamostaseologie) Vol. 38 Issue 3 Pg. 129-140 (Aug 2018) ISSN: 2567-5761 [Electronic] Germany
• PMID: 29996170 (Publication Type: Journal Article)
• Copyright: Georg Thieme Verlag KG Stuttgart · New York.

Topics

• Adolescent
• Adult
• Aged
• Ambulatory Care (methods)
• Child
• Child, Preschool
• Disease Management
• Feasibility Studies
• Female
• Follow-Up Studies
• Hemophilia A (epidemiology, therapy)
• Humans
• Male
• Middle Aged
• Pilot Projects
• Socioeconomic Factors
• Young Adult