Download UDS forms — frequently asked questions

I n i t i a l V i s i t P a c k e t, V e r s i o n 3
UDS forms — frequently asked questions
General UDS question
What is the UDS policy on co-participants?
Co-participants are expected for all case and control subjects enrolled in the UDS. Please do your best to
identify a reliable co-participant for the subject. If a local co-participant is not available, you can contact a
long-distance co-participant. The co-participant needs to be one individual (not a group of friends or family
members) who is considered the best source of information about the subject available. However, in very
exceptional instances (e.g., if the subject refuses to supply an co-participant or there is no co-participant
available), the subject can still be enrolled in the UDS.
Form A1 (Subject Demographics)
q3 — If the subject entered the Center as a control but now many years later is the case, how do we answer?
This question is a bookkeeping item and refers to the presumed case/normal control status at enrollment into
the UDS (regardless of whether this is the first or 10 th assessment). Presumed status is what the assessment
staff thinks the subject is just prior to the initial UDS visit evaluation. If a subject is thought to have MCI,
select 1= Case/patient/proband.
q15 — If there are several people living in the home who are involved with the subject, could more than one
choice be checked?
No, there can be only one response for this question. “Lives with a group (related or not related) in a private
residence” is the best answer in this case.
q16 — We have many persons living in retirement facilities who have their meals provided and their cleaning
done for them. If a person lives in a board-and-care facility and meals are provided, would you choose answer
#3 (“Requires some assistance with basic activities”)?
This question hopes to capture what level of activity the subject is able to do. If the subject is able to do
complex activities but is not doing the activities because of his/her living situation, the subject is still
considered able to live independently. If the subject is impaired, this question is asked of the co-participant.
The examples in the guidebook can be helpful in clarifying the intent of the question to the subject/coparticipant.
Form A4 (Subject Medications)
Should we record what medications are prescribed for the subject — or what medications the subject is
actually taking?
Record the name of the medication as the subject is actually taking it. It is possible that they are not taking
the medication as originally prescribed or as written on the prescription bottle. It is helpful when subjects
bring their medications to the research assessment, so more complete information is obtained. If they do not
bring their medications or a list to the assessment, telephone follow-up may be necessary.
Do all over-the-counter and PRN medications need to be reported on Form A4?
Over-the counter and PRN medications need not be listed unless they are among the 100 listed on Form A4.
Form A5 (Subject Health History)
q1a — There is no place to record the use of snuff or chewing tobacco. This is more common in some of our
rural areas than is cigarette use.
This question is limited to cigarette smoking. If you are interested in capturing chewing tobacco, snuff, etc.,
please do so on a separate non-UDS form.
Form B5 (Behavioral Assessment — NPI-Q)
Is it to be assumed that the breadth of the behavioral symptoms is to be confined to the specific examples, or
are we to expand clinical judgment about behaviors that are varied and yet fit the category?
It is appropriate to rate behaviors that fit the category but may not be noted specifically in the example.
For example, on Question 2, Delusions, the examples relate to false beliefs about “stealing” and to “harm
in some way,” but we know that Aloïs Alzheimer’s initial patient, Auguste D, presented with a delusion of
spousal infidelity. That certainly should be rated under Question 2.
q3 — Is the question on hallucinations focused on a specific type of hallucination?
No, please report both auditory and visual hallucinations newly experienced by the subject in the past month.
Form B7 (Functional Assessment — FAQ)
There is no “total” for this form; should there be?
The FAQ Form does not have a summary score.
Should one interpret “dependent” to mean that the subject cannot do this at all — that someone else has to
do it?
If the co-participant indicates that the subject no longer does a particular task, it is reasonable to probe
further and ask whether the co-participant thinks the subject still could do the task. This will help tease out
the relevant functional impairment.
Form B9 (Clinician Judgment of Symptoms)
Is a chart review of all past medical records needed?
It is not necessary to review records from previous visits. The intent is that you re-ask the question rather than
review your original charts.
q1 — If the subject entered the Center as a control and sometime after enrollment developed memory
problems, how do you want this answered?
We are interested in whether the subject is reporting a decline in memory at this UDS visit. It does not matter
if he or she was enrolled in the ADC as a control. If the subject now reports memory problems, select 1=Yes.
q3, q8, q13 — What information should the clinician use to determine whether meaningful decline exists?
The clinician should refer to medical records and clinical observation. If still uncertain whether there has
been a meaningful decline, he/she should use the information gleaned from the co-participant in Questions
4a–h, 9a–j, and 14a–d to answer Questions 3, 8, and 13. In other words, the clinician should skip Questions
3, 8, and 13, and return to them after reviewing the rest of the form.
Form D1 (Clinical Diagnosis)
q2 — If the subject has normal cognition, why do you skip to Question 6?
Persons with normal cognition, by definition, cannot have dementia or MCI (Questions 3 – 5e). However, they
can have other conditions (e.g., Parkinson’s disease, stroke) at the time of the exam. It is important to collect
data on these conditions even in subjects with normal cognition because they could also show increased risk
of cognitive impairment in the future and it will aid in more precise definition of the “controls.”
How should motor signs be reported for a patient who has been diagnosed with AD but who has now
developed tardive dyskinesia (or similar motor signs/symptoms) apparently secondary to treatment with
phenothiazines (e.g., Thorazine)?
If the phenothiazines are not causing cognitive impairment, indicate motor symptoms due to phenothiazine
use on Form D2, Question 23.
UDS3 Forms FAQ
June 2015
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