qof life nmd

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1 1 “Neuromuscular disorders - how to improve quality of life in patients with neuromuscular disease” Joan Escarrabill MD Master Plan of Respiratory Diseases (PDMAR) Institut d’Estudis de la Salut Barcelona [email protected] Stressa, April 4th 2009

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ERCA Stressa 3-4 April 2009

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Page 1: Qof Life Nmd

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“Neuromuscular disorders - how to improve quality of life in patients with neuromuscular disease”

Joan Escarrabill MDMaster Plan of Respiratory Diseases (PDMAR)

Institut d’Estudis de la Salut

Barcelona

[email protected]

Stressa, April 4th 2009

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MJA 2003; 179: 253–256

“more expert” patients To develop common ground. Patient autonomy: “fully informed choice”

...re-organising healthcare systems to maximise the partnerships of patients and doctors in managing chronic disease.

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Health care system

Direct access to the team

Waiting time

Fragmentation

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Working for patients on home mechanical ventilation

Organized by: With the contribution of:

Welcome Benvinguts Bienvenidos

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Technological innovation

Care & organization

Real life

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Quality of life

Autonomy: to decide

Mobility

Social networks

Caregiver support