What affects quality of life in PD?
A plea for assistance from the EPDA
Quality of life is a critical issue for all associated with Parkinson's
disease (PD) - people with Parkinson's disease, their families and
caregivers, and their clinical care teams. Individuals and groups around
the world have different ideas about what factors affect quality of life in
PD. All these ideas are important, but as yet we do not fully understand
the relationships between them. Increased knowledge of the interplay of
these factors will improve understanding of PD.
To gain this critical insight into PD, the European Parkinson's Disease
Association (EPDA) are compiling a list of factors which effect the
quality of life of Parkinson's Disease patients.
How can you help?
You can contribute by telling us what factors have most affected your
quality of life or that of people you know with Parkinson's disease.
(These can be factors that have either helped or harmed their quality of
life)
Below is a list of some factors. As a start feel free to talk about them or
add others. Responses will be compiled into a world-wide study to take
place next year.
Information on the disease
How was the diagnosis delivered?
What aspects of this did you find helpful/unhelpful?
How much information has been available to you at and since
diagnosis?
How has this helped? Was there enough?
Could your care team have provided different information?
Actions you have taken
What actions have you and your family/caregiver taken that have
improved your quality of life?
Is there anything that you would not do again?
How do you and your family/caregiver perceive PD?
How have you have come to terms with PD?
Do you feel that a positive attitude to PD affects your quality of
life? If so, how?
Therapies that help
Are non-drug therapies such as physiotherapy, speech therapy,
occupational therapy helpful?
What other non-drug therapies have you found helpful/unhelpful?
What drug therapies have you used that have affected (improved
or reduced) quality of life?
What about other practical factors have you found affect quality
of life?
Interaction with the care team and support groups?
What kinds of meetings with your neurologist, primary care
physician, PD nurse etc. have been helpful/unhelpful?
What other elements of your relationship with these professionals
do you find helpful/unhelpful?
Are you a member of a PD support group or society (or similar)?
What elements of their support have you found helpful/unhelpful?
What other factors have affected/may affect your quality of life in
PD?
Thank you for taking the time to read this; please now help to improve
understanding of quality of life in PD by responding.
We look forward to hearing from you. Please email your responses (or
questions) to Simon Morris at [log in to unmask] by
Friday 25 July. Simon is working ith the EPDA to help compile this list of
factors.
