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Hamostaseologie 2020; 40(05): 631-641
DOI: 10.1055/a-1141-1175
Original Article

Health-Related Quality of Life, Treatment Satisfaction and Adherence Outcomes of Haemophilia Patients Living in a German Rural Region

Sylvia von Mackensen
1   Department for Medical Psychology, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany
,
Christian Schleicher
2   Institute of Clinical Haemostaseology and Transfusion Medicine, European Haemophilia Comprehensive Care Centre, Saarland University Hospital, Homburg, Saar, Germany
,
Sabine Heine
3   Department for Paediatric Oncology and Haematology, European Haemophilia Comprehensive Care Centre, Saarland University Hospital, Homburg, Saar, Germany
,
Norbert Graf
3   Department for Paediatric Oncology and Haematology, European Haemophilia Comprehensive Care Centre, Saarland University Hospital, Homburg, Saar, Germany
,
Hermann Eichler
2   Institute of Clinical Haemostaseology and Transfusion Medicine, European Haemophilia Comprehensive Care Centre, Saarland University Hospital, Homburg, Saar, Germany
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Abstract

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-SatA/Hemo-SatP). 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.

Keywords

haemophilia - haemophilia treatment centre - health-related quality of life - treatment satisfaction - adherence - adults - children

Authors' Contributions

Sylvia von Mackensen (S.v.M.) and Hermann Eichler (H.E.) were involved in the planning of the project, analysing the data and writing of the manuscript. Christian Schleicher (C.S.) was involved in the management of the study, patient recruitment, data generation by performing patient interviews, contributed to data analysis and gave relevant input during the review of the manuscript; Sabine Heine (S.H.) was involved in patient recruitment and reviewed the results and the manuscript; Norbert Graf (N.G.) was involved in management of the study and gave relevant input during the review of the manuscript.




Publication History

Received: 13 December 2019

Accepted: 18 March 2020

Article published online:
04 May 2020

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