Download Baseline Case Report Form (to be completed by specialist)

Appendix 3
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Baseline Case Report Form (to be completed by specialist)
CRF-NUMBER
001-001 (pre-numbered)
SPECIALIST
1.
2.
Type of specialist:
Setting
Neurologist
peripheral hospital
private practice
Geriatrician
university hospital
other _____________
General patient data
3.
Patient signed informed consent?
4.
Gender
5.
Year of birth
6.
Residency
(at the time
of first visit)
At Home, alone
At Home, together with spouse or partner
Living together with other family
specify: ___________
Living together with other
specify: ___________
7.
Educational level:
Number of years in school successfully completed:
Primary school
Highest educational level
Secondary school
Higher education
Unknown
Male
Female
Information about accompanying persons/caregivers
8.
Was the patient accompanied by a relative/acquaintance during the visit in which the
diagnosis and treatment/care plan were discussed?
No
Yes, by spouse or partner
Yes, by child
Yes, by other family
Yes, by other person (not family)
9.
specify:
specify:
___________________
___________________
Does the patient have a main caregiver (somebody who takes the primary
responsibility of caring for the patient)?
No
Spouse or partner
Child
12
Other family
Other person (not family)
10.
specify:
specify:
___________________
___________________
Does the main caregiver (if available) live in the same house as the patient?
Yes
No
Not applicable
Unknown
11.
Is the main caregiver the person who accompanied the patient during the last visit (=
enrolment visit)?
Yes
No
Not applicable
Diagnosis of AD (enrolment visit)
12.
Date on which the diagnosis and treatment/care plan
were discussed with the patient:
13.
How did you communicate the diagnosis to the patient? (more than one answer
possible)
-
-
Alzheimer’s disease
Dementia
Cognitive decline
Accelerated ageing process of the brain
Physical atrophy of the brain
Problems with memory/concentration
Other: _________________________
14.
Did you discuss disease progress or prognosis with the patient?
No
Yes, on my own initiative
Yes, on the explicit request of the patient and/or caregiver
15.
Did you speak separately with the person who accompanied the patient?
No
Yes, on my own initiative
Yes, on the request of the accompanying person
Not applicable
13
Pre-diagnosis consultations
16.
Date of first consultation
17.
Initiation of first consultation:
-
-
By patient
By family/caregiver
Referred by GP
Referred by specialist from my centre: ______________(specify type)
Referred by specialist from other centre: ______________(specify type)
Other:
_______________________________________________________
18.
Reason(s) for first consultation (multiple answers allowed):
Cognitive problems
Functional problems
Behavioural problems
Other
specify:
19.
__________________________
Was the patient hospitalised at the time of first consultation?
No
Yes
In this hospital
In another hospital
what was the main reason for admission:___________
Diagnostic procedures and outcomes
20.
Cognitive and functional tests performed
Test
Score
Scale (maximum score)
MMSE
/
ADAS-Cog
/
CAM-Cog
/
ADL (Katz)
/
I-ADL (Lawton)
/
Global Deterioration Score
/
7
NPI-Q
/
Other:
________________ ____________________
Other:
________________ ____________________
14
21.
Which other diagnostic tests related to dementia were performed preceding the
enrolment visit?
None
EEG
CT-scan
MRI
Scintigraphy
Liquor
Blood: Vitamin B12
Blood: Folic acid
Blood: thyroid function
Other: ________________________
Other: ________________________
22.
Which other professionals did you ask for advice or additional information during the
diagnostic evaluation?
None
Patient’s family physician
Geriatrician
Neurologist
Psychiatrist
(Neuro)psychologist
Occupational therapist
Other
specify: ______________________________
23.
What is total number of contacts you had with the patient during the diagnostic
phase? (including first consultation and enrolment visit)
Co-morbidities
24.
Presence of co-morbidities relevant to the diagnosis, treatment and/or care plan of
AD:
Depression
Psychiatric manifestations
(Cerebro)vascular diseases
Loco-motor diseases
Other
specify:
specify:
specify:
specify:
________________________
________________________
________________________
________________________
15
Medications
25.
Which medications did the patient take at the time of the first consultation, and which
medications have you altered or started after the first visit?
At the time
of first visit
YES
NO
After first visit
Stopped
Altered
Started
Cholinesterase inhibitors
NMDA receptor antagonists
Herbal AD medications (eg.Ginkgo)
Antioxydants/vitamin E
Antipsychotics
Anticonvulsants
Antidepressants
Sedatives/anxiolytics
Other medications related to AD or to enhance cognition (eg. Piracetam):
______________________
Other medications that may (negatively) influence cognition and /or cholinergic
neurotransmission:
______________________
26.
What is the patient’s total number of medications (including all listed in
‘gecommentarieerd geneesmiddelen repertorium’)?
16
Care plan
27.
Please describe your proposal for this patient’s follow-up (multidisciplinary proposal
for care and support for the patient’s environment; care plan):
narrative (if possible copy from patient file or from letter to colleague etc.)
28.
What is the main purpose of your proposal for a care plan?
29.
With whom of the following professionals was the care plan effectively discussed?
Patient’s family physician
Geriatrician
Neurologist
Psychiatrist
(Neuro)psychologist
Occupational therapist
Home care organisation representative
Other
specify ___________________________
Other
specify ___________________________
None
30.
Which of the following services were advised in the care plan?
Home care by nurse
Home care by professional care helper (house keeping, meals, washing)
Social worker visits
Cognitive training
Behavioural training
Physical therapy
Psychological therapy/ support
Day care
Institutionalisation
Patient support group (Alzheimer patient association)
Other
Other
specify: _____________________________
specify: _____________________________
None of the above
Follow-up
31.
Has a follow-up visit been scheduled?
no
yes
Date:
-
17