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PRP Support Group Survey

Results of March 2006 Survey

Question 1. Overall, what do you think of our conducting a PRP Support Group survey?

Very worthwhile	88.7%	(55)
Uncertain / Not sure	11.3%	(7)
Not at all worthwhile		(0)
TOTAL	100.0%	62

Question 2. Will you complete a future survey?

Yes (go to Question 3)	100.0%	(62)
No (skip to Question 4)		(0)
TOTAL	100.0%	62

Question 3. How likely or unlikely are you to complete one or more surveys during the next 6 months?

Very likely	80.6%	(50)
Somewhat likely	14.5%	(9)
Not sure		(0)
Somewhat unlikely		(0)
Very unlikely	1.6%	(1)
TOTAL	96.8%	60

Question 4. What do you think should be the primary purpose of future PRP surveys?

There were 62 individual responses to this question. The responses have been grouped and summarised as follows:

Treatment effectiveness / outcome	22.6%	(14)
Disease knowledge, understanding, and education	17.7%	(11)
Common disease patterns	14.5%	(9)
General research tool	14.5%	(9)
Support and advice	14.5%	(9)
General information and awareness	9.7%	(6)
Other	6.4%	(4)
TOTAL	100.0%	62

Detailed responses are as follows:

TREATMENT EFFECTIVENESS / OUTCOME (14 responses)

Collect information about treatments and effectiveness for individuals.
Effective data allowing a reasonable assessment of the various treatment options, including 'no treatment' other than surface comfort. We are a subjective group; even so properly phrased questions could lead to statistically useful data.
Find common meds or treatments that offer relief to the most common complaints associated with PRP. We are not trained medical researchers but with the number of us that are wanting to be proactive in our treatment, we should be able to compile a list of treatments that help.
Meds: what works, what doesn't, side effects
Research into PRP - treatments of PRP - research into PRP cause and treatment research
Suggestions on what helps alleviate PRP symptoms
To build up a quick reference library of products/creams/tablets, etc which may help in pain relief and give some degree of comfort during desperate times. I would imagine most people join the support group for just that reason - desperation. Once you get a degree of comfort and some sort of control of the situation, you can then move forward and contribute to building up a picture, completing surveys for instance and therefore hopefully helping yourself and others in the future.
To learn what treatments work
To look at new innovations of treatment of PRP
To see how people have progressed, what remedies have helped each other. I wish that we could get the medical profession to pay more attention to this disorder. When going to another dermatologist for a second opinion, he and his doctor's assistant had no idea what PRP was.
Treatment outcomes
Trying to find a cure!!! Or, at the very least . . . trying to find a comfortable way to live with this.
Types of treatments.
What medications taken (if any) for PRP, and what have been your results?

DISEASE KNOWLEDGE, UNDERSTANDING AND EDUCATION (11 responses)

Documentation of locale. Perhaps there are certain conditions associated with certain areas contributing to the disease.
Establishing data that is consistent on medical aspect of PRP: --type of PRP --timeline of disease progression (in retrospect, first sign; first accurate diagnosis; first sign of clearing; clearing (latter two, if applicable --timeline of medical experience (how many doctors before accurate diagnosis; where located; how many doctors and specialties involved) --timeline and experience with medical treatment, i.e., drugs
Figure out what causes this disease/condition.
Finding underlying aspects of PRP.
Help to educate the medical profession.
Surveys are used to gather information for compiling statistical numbers. I would think this kind of information would be mostly useful for professionals who are conducting studies for medical trials, or for those who are compiling information for presentations, either oral or written. As a member of this group, the information is probably useful for my reading and curiosity.
To be comprehensive enough to see if "common threads" could be established .. What do we all have in common?
To find out what to expect from PRP
To gather information re PRP that it exists worldwide and hopefully the medical world will take more interest and research into it
To note reality & fact
While I believe it is important for people in like situations to be able to communicate I also believe it is very important to share medical information. Maybe we can find a common link.

COMMON DISEASE PATTERNS (9 responses)

An attempt to find things that may be similar to several people that may suggest why or what have started PRP
Hopefully, to find a common cause
I am interested in learning more about the months that people first come down with symptoms of PRP. As I read the emails from other PRPers, it seems that august, September and November are the months people are diagnosed. This does not have to be the primary purpose, but I am interested in this.
See if there is a common denominator re appearance of PRP
Similarities at onset; physical, environmental as well as emotional for months prior to onset
To determine a common thread in people w/this disease to possibly lead to cause and hopefully cure for PRP.
To determine commonalities between the patients to try to figure out what may have cause this and what may cure this dreaded disease
To find common links among PRP patients and determine if there are any common threads among people with PRP.
To identify patterns of onset triggers and physiological characteristics that might predispose one to risk of developing PRP.

GENERAL RESEARCH TOOL (9 responses)

Collating objective information from all the people with PRP in such a way that becomes a valid tool for current/future research.
Gaining information for future research projects.
Gaining statistics so the medical profession in general can get to know about this disease and then hopefully they may see the need to do more investigations into the causes and therefore learn the best method of treating it.
Show that this disease is not as rare as is thought; learn more about treatment (and non treatment options) and find out which doctors are helpful.
To ask the date of onset and the date of diagnosis, and the date of recovery
To determine the presence of this disease in the world population.
To gather data for possible future research
To produce an accurate baseline study of PRP members, both current and past, with respect to age, sex, demographics, the effectiveness (or not) of medical treatments, alternative treatments, no treatment, etc.
To provide an easy-to-access summary of current PRP demography; patient symptoms and time-lines; plus assessment of effectiveness of medications and supplements currently being used

SUPPORT AND ADVICE (9 responses)

Helping others with PRP
Letting new members know they are not alone.
Sharing remedies that help the symptoms.
To advise members of any help available
To find out if members needs are being met, and if not what they do need.
To gather information and to lock in on those areas of PRP that are most important to the PRP support group, and to use this information as guidelines for assisting our group.
To gauge whether people have found that belonging to a support group has been helpful
To make sure PRP people are getting reliable information
To make this forum more useful to our members

GENERAL INFORMATION AND AWARENESS (6 responses)

Capture care & comfort routines - it's an area sorely lacking in the current medical literature and general medical knowledge
For PRP to be recognised to a greater degree than at present.
Influence physicians to use our survey capability to gain needed information regarding treatment and outcomes.
Survey results should be used to educate the members of this support group as well as to use for educating and sharing with the provider community (and pharmaceutical companies, etc.)
To centralize all known facts about PRP individual cases.
To find useful information

OTHER (4 responses)

Could be for anything...
I am not sure at this time
Unsure at this time
Whatever is deemed by those conducting the survey to be in the best interest of sufferers of PRP.

Question 5. What, if any, should be a secondary purpose of future PRP surveys?

There were 43 individual responses to this question. The responses have been grouped and summarised as follows:

Treatment effectiveness / outcome	24.2%	(15)
Support and advice	9.7%	(6)
Disease knowledge, understanding, and education	9.7%	(6)
General information and awareness	9.7%	(6)
General research tool	8.1%	(5)
Common disease patterns	6.4%	(4)
Collaboration and advocacy	1.6%	(1)
TOTAL	69.3%	43

Detailed responses are as follows:

TREATMENT EFFECTIVENESS / OUTCOME (15 responses)

An attempt to find products that actually improves PRP to make scientific surveys - if possible, maybe helped by a derm or a university-hospital
Best medical and non medical treatments
Guess it makes people feel they are trying to take matters into their own hands to find a cause and the best treatments. It is definitely a comfort to talk to others and find out their experiences while going through the toughest times of the disease.
Homemade remedys
How treatments work
Information that could possibly be of major importance to new PRP'ers, ie comparisons such as medication -v- non medication and length of time until clearing.
Long term follow up of side effects felt with or without drugs
Monitor effectiveness and outcomes of treatment
Provide data on non medical alternatives used by members
To ask precriptions used and over the counter drugs/lotions used. To ask what prescriptions and over the counter drugs/lotions helped.
To help each other learn about what works and what dont..and being able to help each other know what the signs of this is and where to find answers
To identify recovery statistics and an organized listing of treatment regimens that provide relief.
To learn which medications tend to be most helpful
Treatment success & failure
What has worked best for you to stop the itching?? And then ask the same for other of the severest, most common, complaints such as scalp issues, etc.

SUPPORT AND ADVICE (6 responses)

Educate people who suffer from PRP.
For support to members joining our group.
Future direction for the group - what do we want from the web site, what do we as a group want to achieve?
Keep the group going
The support and education you find on this site would not have been possible if it had not been for previous surveys and information from present and previous sufferers.
To encourage each other

DISEASE KNOWLEDGE, UNDERSTANDING AND EDUCATION (6 responses)

Capture info around potential causation / exacerbation for potential future research projects
Each PRP sufferer joining the support group should be encouraged to keep a diary. 10 years ago when I had an accute attack of PRP, I started a diary and noted things which I thought helped me at that time and things which stuck out in my mind leading up to the attack which I thought may have been relevant to triggering the attack. With a recent acute flare up, I have found it very useful. These notes are tailor made for me, but if everyone keeps a diary and builds up their own self help guide, they could eventually share them in a survey in the hope that some day we may have some degree of control with this dreadful disease.
Give patients more information
Info. Could be available to interested medical people.
To encourage the medical community to become more aware of the disease because of their lack of knowledge or concern, in some cases.
To find a cure for PRP

GENERAL INFORMATION AND AWARENESS (6 responses)

Compile a quality of care for A.M.A. review. I see a lot of issues in our e-mails reference doctors and their manner of handling patients with PRP.
Educating our group in the provision of information which is as objective as possible.
Information data base for newly diagnosed PRP sufferers
Interest/help topics for those suffering with PRP.
Serious side effects
To perhaps use the surveys to get support outside of the PRP support group, for instance, doctors, research, funding, etc.

GENERAL RESEARCH TOOL (5 responses)

Collating subjective/anecdotal information from all the people with PRP in such a way that becomes a valid tool for current/future research.
Creating a database for research, if anybody would be interested to jump into it.
Gather information about those afflicted with PRP
Just what are the most common problems associated with PRP.
Research

COMMON DISEASE PATTERNS (4 responses)

Aggregate groups by types to help make connections among like types.
Finding common links to the disease.
To find a pattern in the disease's progress and response to treatment. To uncover underlying factors that may "trigger" PRP.
To try and build a picture of what the possible trigger points for PRP are and see if there is some common ground. I know this would take many years but you have to start somewhere and it should eventually lead to something.

COLLABORATION AND ADVOCACY (1 response)

To provide and distribute information to appropriate dermatology orgs or institutions, which may lead to funding for further PRP research.

Question 6. Do you think medical professionals will pay attention to our research efforts?

Yes	32.3%	(20)
Unsure / Don't know	61.3%	(38)
No	6.5%	(4)
TOTAL	100.0%	62

Question 7. Are your doctors aware of our PRP support group?

Yes - one or more of my doctors are aware of the group	75.8%	(47)
Unsure / Don't know	21.0%	(13)
No - none of my doctors are aware of the group	3.2%	(2)
TOTAL	100.0%	62

Question 8. How often have you sent a message to the support group in the past 3 months (i.e. during December, January, and February) ?

Never - 0 times	25.8%	(16)
1-2 messages	29.0%	(18)
3-6 messages	17.7%	(11)
7-12 messages	12.9%	(8)
More than 12 messages	14.5%	(9)
TOTAL	100.0%	62

Question 9. Please select one of the following. Are you a:

PRP patient	71.0%	(44)
Caregiver	29.0%	(18)
Other: (please explain)		(0)
TOTAL	100.0%	62

Note: 6 responses were given for "Other", with explanations that they were former patients or former caregivers. It was intended that "PRP patient" and "Caregiver" include both current and former patients/caregivers. The responses have been adjusted accordingly.

Question 10. Any other comments about our surveys?

There were 37 individual responses to this question.

Thank you to everyone who responded to this survey!