Feasibility and Results of a Mobile Haemophilia Outpatient Care Pilot Project

Hermann Eichler; Christian Schleicher; Sabine Heine; Norbert Graf; Sylvia von Mackensen

doi:10.1055/s-0038-1654721

Feasibility and Results of a Mobile Haemophilia Outpatient Care Pilot Project

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Feasibility and Results of a Mobile Haemophilia Outpatient Care Pilot Project. / Eichler, Hermann; Schleicher, Christian; Heine, Sabine; Graf, Norbert; von Mackensen, Sylvia.

In: HAMOSTASEOLOGIE, Vol. 38, No. 3, 08.2018, p. 129-140.

Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

Harvard

Eichler, H, Schleicher, C, Heine, S, Graf, N & von Mackensen, S 2018, 'Feasibility and Results of a Mobile Haemophilia Outpatient Care Pilot Project', HAMOSTASEOLOGIE, vol. 38, no. 3, pp. 129-140. https://doi.org/10.1055/s-0038-1654721

APA

Eichler, H., Schleicher, C., Heine, S., Graf, N., & von Mackensen, S. (2018). Feasibility and Results of a Mobile Haemophilia Outpatient Care Pilot Project. HAMOSTASEOLOGIE, 38(3), 129-140. https://doi.org/10.1055/s-0038-1654721

Vancouver

Eichler H, Schleicher C, Heine S, Graf N, von Mackensen S. Feasibility and Results of a Mobile Haemophilia Outpatient Care Pilot Project. HAMOSTASEOLOGIE. 2018 Aug;38(3):129-140. https://doi.org/10.1055/s-0038-1654721

Bibtex

@article{d66524cd7336457c8a34e35725fade88,

title = "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.",

keywords = "Adolescent, Adult, Aged, Ambulatory Care/methods, Child, Child, Preschool, Disease Management, Feasibility Studies, Female, Follow-Up Studies, Hemophilia A/epidemiology, Humans, Male, Middle Aged, Pilot Projects, Socioeconomic Factors, Young Adult",

author = "Hermann Eichler and Christian Schleicher and Sabine Heine and Norbert Graf and {von Mackensen}, Sylvia",

note = "Georg Thieme Verlag KG Stuttgart · New York.",

year = "2018",

month = aug,

doi = "10.1055/s-0038-1654721",

language = "English",

volume = "38",

pages = "129--140",

journal = "HAMOSTASEOLOGIE",

issn = "0720-9355",

publisher = "Schattauer",

number = "3",

}

RIS

TY - JOUR

T1 - Feasibility and Results of a Mobile Haemophilia Outpatient Care Pilot Project

AU - Eichler, Hermann

AU - Schleicher, Christian

AU - Heine, Sabine

AU - Graf, Norbert

AU - von Mackensen, Sylvia

N1 - Georg Thieme Verlag KG Stuttgart · New York.

PY - 2018/8

Y1 - 2018/8

N2 - 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.

AB - 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.

KW - Adolescent

KW - Adult

KW - Aged

KW - Ambulatory Care/methods

KW - Child

KW - Child, Preschool

KW - Disease Management

KW - Feasibility Studies

KW - Female

KW - Follow-Up Studies

KW - Hemophilia A/epidemiology

KW - Humans

KW - Male

KW - Middle Aged

KW - Pilot Projects

KW - Socioeconomic Factors

KW - Young Adult

U2 - 10.1055/s-0038-1654721

DO - 10.1055/s-0038-1654721

M3 - SCORING: Journal article

C2 - 29996170

VL - 38

SP - 129

EP - 140

JO - HAMOSTASEOLOGIE

JF - HAMOSTASEOLOGIE

SN - 0720-9355

IS - 3

ER -