PMID- 29996170
OWN - NLM
STAT- MEDLINE
DCOM- 20190819
LR  - 20220321
IS  - 2567-5761 (Electronic)
IS  - 0720-9355 (Linking)
VI  - 38
IP  - 3
DP  - 2018 Aug
TI  - Feasibility and Results of a Mobile Haemophilia Outpatient Care Pilot Project.
PG  - 129-140
LID - 10.1055/s-0038-1654721 [doi]
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.
CI  - Georg Thieme Verlag KG Stuttgart . New York.
FAU - Eichler, Hermann
AU  - Eichler H
AD  - Institute of Clinical Hemostaseology and Transfusion Medicine/European Hemophilia 
      Comprehensive Care Center, Saarland University Hospital, Homburg/Saar, Germany.
FAU - Schleicher, Christian
AU  - Schleicher C
AD  - Institute of Clinical Hemostaseology and Transfusion Medicine/European Hemophilia 
      Comprehensive Care Center, Saarland University Hospital, Homburg/Saar, Germany.
FAU - Heine, Sabine
AU  - Heine S
AD  - Department for Pediatric Oncology and Hematology/European Hemophilia 
      Comprehensive Care Center, Saarland University Hospital, Homburg/Saar, Germany.
FAU - Graf, Norbert
AU  - Graf N
AD  - Department for Pediatric Oncology and Hematology/European Hemophilia 
      Comprehensive Care Center, Saarland University Hospital, Homburg/Saar, Germany.
FAU - von Mackensen, Sylvia
AU  - von Mackensen S
AD  - Department for Medical Psychology, University Medical Center Hamburg-Eppendorf, 
      University of Hamburg, Hamburg, Germany.
LA  - eng
PT  - Journal Article
DEP - 20180711
PL  - Germany
TA  - Hamostaseologie
JT  - Hamostaseologie
JID - 8204531
MH  - Adolescent
MH  - Adult
MH  - Aged
MH  - Ambulatory Care/*methods
MH  - Child
MH  - Child, Preschool
MH  - Disease Management
MH  - Feasibility Studies
MH  - Female
MH  - Follow-Up Studies
MH  - Hemophilia A/epidemiology/*therapy
MH  - Humans
MH  - Male
MH  - Middle Aged
MH  - Pilot Projects
MH  - Socioeconomic Factors
MH  - Young Adult
COIS- Disclosure The authors report no conflicts of interest in this work.
EDAT- 2018/07/12 06:00
MHDA- 2019/08/20 06:00
CRDT- 2018/07/12 06:00
PHST- 2018/07/12 06:00 [pubmed]
PHST- 2019/08/20 06:00 [medline]
PHST- 2018/07/12 06:00 [entrez]
AID - 10.1055/s-0038-1654721 [doi]
PST - ppublish
SO  - Hamostaseologie. 2018 Aug;38(3):129-140. doi: 10.1055/s-0038-1654721. Epub 2018 
      Jul 11.