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.

Zusammenfassung

Einleitung Regelmäßige Besuche in Hämophilie-Behandlungszentren (HTCs) hängen in ländlichen Regionen oft vom Zugang zu einem privaten Auto ab, da öffentliche Verkehrsmittel nicht oder nur in begrenztem Umfang zur Verfügung stehen. Ein mobiles Hämophilie-Ambulanz-Konzept (MHOC), das Hausbesuche bei Hämophilie-Patienten ermöglicht, wurde daher vom Saarland HTC entwickelt, das in einer ländlichen deutschen Region angesiedelt ist.

Methodik Hämophilie-Patienten und ihre Eltern wurden mindestens zweimal (zu Beginn, Follow-up) von geschultem medizinischem Personal besucht. Soziodemografische und klinische Daten wurden gesammelt und Interviews durchgeführt, in denen Patienten und Eltern über ihre Bedürfnisse und Erwartungen an eine solche MHOC befragt wurden.

Ergebnisse Neunundsiebzig Patienten wurden eingeschlossen (56 Erwachsene, 23 Kinder), 62,0% schwer betroffen, 48,1% auf Prophylaxe, mit einem Durchschnittsalter von 37,4 ± 16,4 Jahren (17-78) beziehungsweise 9,8 ± 4,2 Jahren (3-16). Die mittlere Reiseentfernung zum HTC betrug 43,5 km (3-200). Es ist bemerkenswert, dass 92,4% eine intensive Bindung an das HTC und ein MHOC-Konzept als "ziemlich / sehr wichtig" (88,6%) ansahen. Sie erwarteten von einem MHOC Beratungs- und Aufklärungsaktivitäten, Unterstützung bei Fragen zum Älterwerden und Behandlung. Für 35,4% könnte eine MHOC derzeit zusätzliche Unterstützung bieten, hauptsächlich aufgrund der Unbeweglichkeit des Patienten und des Beratungsbedarfs. Sie nutzten vor allem Dienstleistungen in Bezug auf sozialrechtliche Beratung und Unterstützung bei Behördenanliegen.

Schlussfolgerung Die Ergebnisse dieser Studie stützen die Hypothese, dass ein MHOC-Konzept eine notwendige Ergänzung in der umfassenden Hämophilie-Versorgung darstellt und die anspruchsvolle Hämophilie-Behandlung verbessern wird, insbesondere für Patienten mit eingeschränktem Zugang zu HTCs oder mit Behinderungen.

Keywords

haemophilia - haemophilia treatment centre - mobile home care - patient needs - adherence - adults - children

Schlüsselwörter

Hämophilie - Hämophilie-Zentrum - mobile häusliche Pflege - Patientenbedürfnisse - Adherenz - Erwachsene - Kinder

Authors' Contributions

H.E. was involved in the planning of the project, analysing the data and writing of the manuscript. C.S. was involved in the management of the study, patient recruitment, data generation by performing patient interviews, data analysis and gave relevant input during the review of the manuscript. S.H. was involved in patient recruitment and reviewed the results and the manuscript. N.G. was involved in the management of the study and gave relevant input during the review of the manuscript. S.v.M. was involved in planning of the project, analysing the data and contributed to the writing of the manuscript.

Disclosure Statement

H.E. and C.S. received travel expenses from Baxter Deutschland GmbH regarding the project. S.v.M. received travel expenses in the frame of the project grant. S.H. and N.G. have nothing to disclose.

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