QOL Studies: Delivery of Care Issues

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QOL StudiesDelivery of Care Issues

• Alessandro Gringeri Sylvia von Mackensen
• University of Milan, Italy, University of
  Hamburg, Germany
• European Union

alessandro.gringeri_at_unimi.it
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Outline

• What is health-related quality of life (HR-QoL)?
• Is HR-QoL measurable?
• How is HR-QoL in children with haemophilia?
• How is HR-QoL in adults with haemophilia?
• How does concentrate consumption impact on HR-QoL?

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What is HR-QoL
Is HR-QoL measurable
HR-QoL in children
HR-QoL in adults
HR-QoL and factor usage

• Health-related Quality of Life is the patients
  perception of wellbeing
• In other words, it is health judged by the
  patient from his own perspective

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What is HR-QoL
HR-QoL is measurable
HR-QoL in children
HR-QoL in adults
HR-QoL and factor usage

• It is subjective, but not abstract.
• There are standardized and validated instruments.
  
• They generic and disease-specific instruments
  are
• capable to measure HR-QoL between different
  health conditions
• sensitive to capture differences in patients with
  different treatments and/or over time

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What is HR-QoL
HR-QoL is measurable
HR-QoL in children
HR-QoL in adults
HR-QoL and factor usage
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What is HR-QoL
HR-QoL is measurable
HR-QoL in children
HR-QoL in adults
HR-QoL and factor usage
European HAEMO-QOL studyKINDL Scores in
comparison to different diseases
Higher scores, better QoL
V.Mackensen S M. Bullinger, Haemophilia 2004
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What is HR-QoL
HR-QoL is measurable
HR-QoL in children
HR-QoL in adults
HR-QoL and factor usage
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European HAEMO-QOL studyHaemo-QoL total score
across countries
What is HR-QoL
HR-QoL in children
HR-QoL in adults
HR-QoL and factor usage
HR-QoL is measurable
HR-QoL is measurable
Lower scores, better QoL
F3.178, p lt.026
V.Mackensen S M. Bullinger, Haemophilia 2004
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What is HR-QoL
HR-QoL in children
HR-QoL in adults
HR-QoL and factor usage
HR-QoL is measurable
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Italian QoL studies SF-36 results
What is HR-QoL
HR-QoL in children
HR-QoL in adults
HR-QoL and factor usage
HR-QoL is measurable
Higher scores, better QoL
PFPhysical Functioning, RPRole-Physical,
BPBodily Pain, GHGeneral Health,
VTVitality/Energy, SFSocial Functioning,
RERole-Emotional, MHMental Health
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What is HR-QoL
HR-QoL in children
HR-QoL in adults
HR-QoL and factor usage
HR-QoL is measurable
European Health Economic Study SF-36
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What is HR-QoL
HR-QoL in children
HR-QoL in adults
HR-QoL and factor usage
HR-QoL is measurable
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EQ-VAS score and Aging
What is HR-QoL
HR-QoL in children
HR-QoL in adults
HR-QoL and factor usage
HR-QoL is measurable
Italian QoL Studies
Higher scores, better QoL
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SF-36 Physical Functioning and Aging
What is HR-QoL
HR-QoL in children
HR-QoL in adults
HR-QoL and factor usage
HR-QoL is measurable
Italian QoL Studies
Higher scores, better QoL
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The ESCHQoL Studywww.eschqol.org
What is HR-QoL
HR-QoL in children
HR-QoL in adults
HR-QoL and factor usage
HR-QoL is measurable
European Study of Clinical, Health economic and
Quality of Life outcomes in Haemophilia treatment
Coordinator Prof. Wolfgang Schramm
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What is HR-QoL
HR-QoL in children
HR-QoL in adults
HR-QoL and factor usage
HR-QoL is measurable
Region 2 (2-5 IU)
Region 3 (lt 2 IU)
Region 1 (gt 5 IU)
Austria Denmark France Germany Sweden UK
Portugal Slovenia Slovakia Spain
Switzerland Belgium Finland Greece
Hungary Italy
Poland Romania Turkey Czech
Rep. Lithuania
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What is HR-QoL
HR-QoL in children
HR-QoL in adults
HR-QoL and factor usage
HR-QoL is measurable
HR-QoL in children (KINDL) among factor
consumption regions
?
?
?
n.s.
?
?
?
?
Higher scores, better QoL
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QoL in children (Haemo-QoL total score) among
factor consumption regions
What is HR-QoL
HR-QoL in children
HR-QoL in adults
HR-QoL and factor usage
HR-QoL is measurable
Lower scores, better QoL
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QoL in adults (SF-36) among factor consumption
regions
What is HR-QoL
HR-QoL in children
HR-QoL in adults
HR-QoL and factor usage
HR-QoL is measurable
Higher scores, better QoL
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Treatment Satisfaction
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Treatment satisfaction (Hemo-SatA) among factor
consumption regions
What is HR-QoL
HR-QoL in children
HR-QoL in adults
HR-QoL and factor usage
HR-QoL is measurable
Lower scores, higher satisfaction
?
?
?
?
?
?
?
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Conclusions

• HR-QoL is measurable
• HR-QoL assessment showed that
• PWH have significantly more impairments in their
  HR-QoL compared to the normal population in the
  physical domains.
• Children with haemophilia have a similar
  perception of their wellbeing than children with
  other chronic diseases
• HR-QoL is improved in adult patients on
  prophylaxis
• HR-QoL is comparable in patients with and without
  inhibitors, in countries with access to
  by-passing agents.
• In regions with a higher factor consumption per
  capita PWH report a better HR-QoL and treatment
  satisfaction.

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Acknowledgements

• European Haemo-QoL Study Group
• Italian QoL Studies collaborators
• AICE, COCHE and COCIS Study Group
• ESCHQoL Study collaborators
• Steering committee members
• Wolfgang Schramm (Coordinator)
• P. Giangrande, A. Gringeri, R. Ljung, L. Nemes,
  M. Serban (Clinical experts)
• K. Berger, L. Mantovani (Pharmacoeconomics
  experts)
• M. Bullinger, S. von Mackensen (QoL experts)
• All ESCHQoL investigators
• All Patients

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Ode to Psyche And there shall be for thee all
soft delight That shadowy thought can win,   A
bright torch, and a casement open at night, To
let the warm love in! John Keats
Psyche Opening the Golden Box c. 1903
J.W.Waterhouse