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Quality of Life survey
This just turned up in my email.
Do you have anything like this? I hope you do.
It was a nice chance to vent.
Dear Peter ,
Thank you for participating in the Prostate Cancer Outcomes Registry. The aim of the registry is to improve the management, treatment and outcomes for all men diagnosed with prostate cancer.
We are emailing to invite you to complete a survey about your quality of life following your diagnosis and/or treatment for prostate cancer. Your participation is important and greatly appreciated. By sharing your experience, you can help us to improve prostate cancer care.
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HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
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We did not get any so far.
Last week we got invite for new study at UCSF that will follow patients for 3 years to check how diet changes and exercise effect BCR. My husband applied and hopefully he will get in : ). But if not, we will follow recommendations of that study.
It is really nice that you got that e-mail : ))) ! Person starts feeling as a "person" and not just as a "chart" < 3.
If you get one, it's questions about energy levels, sexual function, changes in appetite & urinary function.
Mine wasn't great. lol
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1 Reaction@peterj116
"was not great" :
: ((( - survey or your assessment : (( of side effects ?
@peterj116, I believe you might be referring to the Prostate Cancer Outcomes Registry in Australia and New Zealand https://prostatecancerregistry.org/
There are a variety of prostate cancer registries that help researchers. Here are a few:
- International Registry for Men With Advanced Prostate Cancer (IRONMAN) https://www.mayo.edu/research/clinical-trials/cls-20533339
- PROMISE, a nationwide registry of prostate cancer patients with inherited gene mutations. https://www.facingourrisk.org/research-clinical-trials/study/149/promise-registry-a-prostate-cancer-registry-of-outcomes-and-germline-mutations-for-improved-survival-and-treatment-effectiveness
- Prostate Cancer Registry – Update https://www.prostate-cancer-research.org.uk/registry-update/
Any others?
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2 Reactions@colleenyoung Yep. That's the one. Is there an American equivalent, to ask actual patients how they're doing - as opposed to researchers?
Great from a mental health perspective.
@surftohealth88
I should have copied the questions as they came up.
Generally about how incontinence is going, erectile function, energy levels... helpful stuff like that.
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1 ReactionI don't have the questions, but i have the results from the last survey, to see if we're doing any better than most...
(this is for prostatectomy patients)
HOW DO PEOPLE WHO HAD SURGERY FEEL IN GENERAL?
Feeling depressed 10%
Lack of energy 13%
Bowel habits are a problem 3%
Losing bowel control is a problem 1%
Urinary function is a problem 9%
Needed more than 1 urinary pad per day 31%
Experienced more than 1 urinary leak per day 20%
HOW DO PEOPLE WHO HAD SURGERY FEEL ABOUT THEIR SEXUAL WELLBEING?
Sexual function is a problem 45%
Can have a fair-very good erection 22%
Erections are firm enough for intercourse 13%
Ability to function sexually is fair-very good 24%
Have interest in sex 40%
Used sexual aids (devices or medications) 60%
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