aids@rutgers.edu;aids_intl@rutgers.edu;fxx1@1lmuacad;fxx1@lmuac ad;bro@huey.met.fsu.edu;uj21@dkauni2.bitnet;rbenoit@count.ab.umd.edu;VMa mied-l@1.MCGILL.CA;anchodd@cc.utas.edu.au;anest-l@ubvm.cc.buffalo.edu

Joerg M. Sigle joerg.sigle at student.uni-ulm.de
Wed Oct 23 15:59:26 EST 1996


Hello!

I write this message to inform you about the concept of a
Quality-of-Life-Recorder, an instrument that allows totally
computer-illiterate people (patients of all ages) to answer electronic
questionnaires without any training.

I write this message to a number of different people. Thus, on the one hand,
it has to stay small, but on the other hand, I have to include some
background information - please read (scan) this mail completely and have a
look at:

http://www.uni-ulm.de/~s_jsigle

There you can get further information, a literature reference and a software
package including documentation.

This mail contains the following paragraphs:

- BACKGROUND
- WHAT I WOULD LIKE TO HAPPEN
- HOW CAN IT HAPPEN
- WHERE IS THE SOFTWARE?
- HARDWARE AND OTHER CONSIDERATIONS
- COPYRIGHT NOTICE
- AND THEN?

...............................................................................

-----------
BACKGROUND:
-----------

A lot of research work has been published in the field of quality of life. A
patient's (multi-dimensional) "quality of life" can be described by results
from questionnaires asking for his subjective perception of his condition.
Supplementing the gained duration of survival, quality of life is another
parameter which informs about the utility of medical measures and which can
support decision making. However, it is not yet collected routinely, among
other reasons, because of practical problems inferred by the use of paper
questionnaires.

As a medical student working in the field of patients' quality of life, in
1993 I designed the original Quality-of-Life-Recorder: a PC-based system
which allowed patients of all ages to fill in an electronic of a quality of
life questionnaire without any training, without any problems. E.g., in one
study in a university outpatient clinic, more than 1100 patients used the
system during a four weeks period in 1993 (compliance >98,5%, questionnaire
completeness >99,96%, data representing 94,8% of the patients who visited
the clinic during the study period). Since then, thousands of patients have
used the system in different settings.

Because there were some limits in the original system (mainly the necessity
of a special hardware device), I continued its development.

----------------------------
WHAT I WOULD LIKE TO HAPPEN:
----------------------------

If the concept of the Quality-of-Life-Recorder will spread, future medical
studies can collect data of high quality, which will be immediately
available, easily exchangeable and which can be used for tasks like
meta-analysis of many studies without any difficulties.

By means of the QL-Recorder, quality of life data can be collected as a
measure of the outcome of different therapy strategies, even in routine
clinical and practice work.

The resulting data base can support further therapy development and decision
making.

(Naturally, the use of this tool is not limited to the medical (patient-)
field, but it can be used anywhere where questionnaire data have to be
processed.)

------------------
HOW CAN IT HAPPEN?
------------------

Recently, I have continued the development of the Quality-of-Life-Recorder.

The resulting software supports almost any available questionnaire, any
input device (depending on your budget and on your taste: mouse, trackball,
digitizer, touch-screen, pen-computer), colors, different fonts and
digitized sound (talking questionnaire) on any Microsoft Windows computer.
Like the original Quality-of-Life-Recorder, it alternatively supports a
solution which does not require a patient to read questions from a screen at
all.

Collected data can be transferred to any computer platform and to any
statistical, mathematical or database software.

An integrated graphic editor allows the user to design electronic versions
from the paper questionnaires he already has got.

Because this tool makes it easy to let a paper questionnaire go electronic,
and because - depending on the hardware you use - its handling is easiest
for a patient, it can be used even in small studies or during questionnaire
development.

The software was developed without any funding from public or private
sponsors so far, because I think that it might be useful for the medical
community.

I want to provide the software as shareware. This means, that you can try it
for free, and you can become a registered user if you want to use it after
an evaluation period. IMPORTANT: if you definitely don't have any funds, you
can still register - FOR FREE!

----------------------
WHERE IS THE SOFTWARE?
----------------------

You can get further information and download the software from:

http://www.uni-ulm.de/~s_jsigle

You will find a self-extracting archive, the software has an automatic setup
routine. So you won't have any trouble in installing it. Its documentation
comes inside a Windows-Help-File, including some images and further
background information.

Don't be afraid: It will be easy to download, taking about 7..15 minutes
through a 28.800 Baud modem connection, 2..5 minutes throug an ISDN link, or
seconds if you have a faster connection.

It really might be interesting for you to have a look at it, if you work in
the medical field. ... Enjoy!

---------------------------------
HARDWARE AND OTHER CONSIDERATIONS
---------------------------------

If you need more information about suitable hardware, if you're looking for
other people using the Quality-of-Life-Recorder, or if you need support to
set up a project, please feel free to contact me.

----------------
COPYRIGHT NOTICE
----------------

Before you use any copyrighted questionnaire, e.g. in a study, you have to
ensure that its respective copyright owners grant you the right to use it.
The fact that you might have available a file which would enable you to
collect data corresponding to a certain questionnaire's definitions and
concepts, needs not automatically entitle you to do so, just the same way
that the fact, that you have a printed copy of a questionnaire, does not
automatically entitle you to use it.

If you don't know where to get information about copyright owners of a
questionnaire, it might be a good start to consult the literature reference
which you find at my web site.




More information about the Ageing mailing list