Keywords
Alzheimer Disease - Diagnosis - Disclosure
Palavras-chave
Doença de Alzheimer - Diagnóstico - Revelação
INTRODUCTION
It is estimated that the number of people with Alzheimer's disease (pwAD) will double
by 2050 worldwide, especially in low- and middle-income countries such as Brazil,[1]
[2]
[3] given the growing increase in life expectancy and the high prevalence of risk factors
associated with the disease.[4]
[5]
[6]
In this regard, the diagnosis of AD and its disclosure to affected people and their
families, although challenging, are very important for the establishment of a pwAD-physician
relationship, which is fundamental and known to improve trust, reliability and collaboration
when facing the disease. The disclosure reinforces the autonomy of pwAD, in accordance
with her/his right to self-determination, protecting her/his relationship with the
physician and valuing their decisions. On the other hand, the paternalistic medical
tradition recognized physicians as the only decision makers, giving them the right
to withhold information from the affected individuals. This fact occurs mostly because
truth telling imposes many obstacles, such as psychological distress, the physician's
fear to take away hope and the fear to confess a bad prognosis.[7] This perspective is changing, being replaced by post-Flexner medical teaching models,
which value patient autonomy and multidisciplinary health care.[8] Thus, the results of studies on the topic vary over time, depending on changes in
society and its paradigms.
Fifteen years ago, Raicher et. al. asked 181 Brazilian physicians who often see patients
with AD whether or not they disclose the AD diagnosis.[9] There were no significant differences between geriatricians, neurologists and psychiatrists
regarding the frequency with which they informed patients of their AD diagnosis. Physicians'
age was correlated significantly to AD disclosure, younger group more frequently reveals
the diagnosis, while the older group more frequently rarely or never tells it. The
results revealed that only 44.8% regularly inform the patient the diagnosis, which
is influenced mainly by the patient's wish to be told. Despite this, 76.8% would like
to know their own diagnosis if they were affected by AD.
Currently, the understanding about AD has evolved, and biomarkers became available
with the possibility of a more precise and earlier diagnosis. However, disclosing
the diagnosis is still a matter of debate, especially amongst different generations
of doctors and family members. Therefore, the objective of this study was to investigate
the current practice of physicians who attend and treat patients with dementia in
Brazil regarding the disclosure of the diagnosis and factors that influence their
behaviors.
METHODS
After approval by the Ethics Committee of the Federal University of Minas Gerais,
an electronic structured questionnaire ([Supplementary Material 1] - https://www.arquivosdeneuropsiquiatria.org/wp-content/uploads/2023/09/ANP-2023.0114-Supplementary-Material-1-e-2-.docx)
in Google form format was sent to the aforementioned medical societies, which forwarded
the form to their members. The questionnaire was open to responses for 85 days, from
May to August 2022.
Fig. 1 General concern about the diagnosis disclosure of AD.
The inclusion criteria of the research were: physicians who assist people with dementia.
Based on the inclusion criteria, there was no need to create specific exclusion criteria.
The first part of the questionnaire had the informed consent form and demographic
questions, which evaluated physicians' age, gender, graduation year, city of work,
possible academic activity, how long they attend pwAD and how many patients they see
per year.
The second part of the questionnaire evaluated factors associated to the pwAD which
may influence the physician's decision to disclosure the diagnosis, namely: age; degree
of confidence on the diagnosis of dementia or of a specific subtype of dementia; financial
status; schooling; severity and stage of the dementia; pwAD desire to know the diagnosis;
the family opinion on the diagnostic disclosure; comorbidities; personality of the
pwAD and the possibility that the diagnostic tests are inconclusive. Also, factors
associated to the diagnostic disclosure itself that influence the physician's decision
were also evaluated, such as the potential of causing psychological distress to the
pwAD; to precipitate catastrophic reactions, a depressive disorder; suicide; or the
possibility of the disclosure taking away hope and motivation.
The data were computed on Excel and analyzed on SPSS software. Non-parametric Chi-square
test was used. Considering the large sample size, to evaluate the statistical differences
found, the alpha value was corrected and a post-hoc assessment was performed.
It is worth remembering that a similar study was carried out just over 15 years ago.[9] We replicated the same questionnaire to also check if there were any changes.
RESULTS
Overall, 397 physicians who often attend pwAD responded to the survey. All questionnaires
were correctly completed. Exactly 51.6% of the respondents were male, with a mean
age of 45.2 years (standard deviation-SD = 11.6 years). All regions of the country
were represented, with a greater number of neurologists and geriatricians, mainly
from the Southeast and Northeast regions ([Supplementary Material 2] - https://www.arquivosdeneuropsiquiatria.org/wp-content/uploads/2023/09/ANP-2023.0114-Supplementary-Material-1-e-2-.docx).
Of the 26 states in the country, responses were obtained from 21 states and the Federal
District. Precisely 67.5% of physicians had some university activity by the time of
the survey.
Fig. 2 Main characteristics that influence the decision to disclose or not the diagnosis
of AD according to the physician's medical specialty.
[Table 1] depicts the demographic data from all respondents and the frequency of AD diagnosis
disclosure.
Table 1
Demographic informations
|
Neurologists
N 231 (58.2%)
|
Geriatricians
N 124 (31.2%)
|
Psychiatrists
N 29 (7.3%)
|
Others
N 13 (3.3%)
|
Total
N 397 (100%)
|
|
Age group-N (%)
|
25-45 years
|
136 (58.9%)
|
66 (53.2%)
|
20 (69.0%)
|
10 (76.9%)
|
232 (58.4%)
|
|
46-85 years
|
95 (41.1%)
|
58 (46.8%)
|
9 (31.0%)
|
3 (23.1%)
|
165 (41.6%)
|
|
Gender-N (%)
|
Male
|
136 (58.9%)
|
48 (38.7%)
|
15 (51.7%)
|
7 (53.8%)
|
206 (51.9%)
|
|
Female
|
95 (41.1%)
|
76 (61.3%)
|
14 (48.3%)
|
6 (46.2%)
|
191 (48.1%)
|
|
University Activity-N (%)
|
Yes
|
168 (72.7%)
|
71 (57.3%)
|
21 (72.4%)
|
8 (61.5%)
|
268 (67.5%)
|
|
No
|
63 (27.3%)
|
53 (42.7%)
|
8 (27.6%)
|
5 (38.5%)
|
129 (32.5%)
|
|
Diagnostic disclosure-N (%)
|
Always or usually
|
156 (67.5%)
|
77 (62.1%)
|
22 (75.9%)
|
10 (76.9%)
|
265 (66.7%)
|
|
Never or rarely
|
26 (11,3%)
|
17 (13.7%)
|
5 (17.2%)
|
1 (7.7%)
|
49 (12.3%)
|
[Tables 2] and [3] display the diagnostic disclosure rates of geriatricians and neurologists, given
that these specialties included 355 physicians (31.2% and 58.2% of participants, respectively).
Most physicians reveal the diagnosis of AD always or usually, mainly within the youngest
group (25-45 years-old) group that disclose the diagnosis more frequently than the
oldest group of physicians ([Table 2]). The proportion of physicians within the 25-45 years old range who never or rarely
disclose the diagnosis is significantly lower than the 46-85 years group.
Table 2
displays the diagnostic disclosure rates of geriatricians and neurologists, given
that these specialties included 355 physicians (31.2% and 58.2% of participants, respectively)
|
Always or usually-N (%)a
|
Sometimes-N (%)
|
Never or rarely-N (%)b
|
Total-N (%)
|
|
25-45 years
|
150 (74.3%)
|
36 (17.8%)
|
16 (7.9%)
|
202 (100%)
|
|
46-85 years
|
83 (54.2%)
|
43 (28.1%)
|
27 (17.6%)
|
153 (100%)
|
|
Total
|
233 (65.6%)
|
79 (22.3%)
|
43 (12.1%)
|
355 (100%)
|
Notes: Chi-squared X2 (2) = 16,246; alpha = 0.0083a;p = 0.0001b;p = 0.0051; Cramer's V 21%.
Table 3
Displays the diagnostic disclosure rates of geriatricians and neurologists, given
that these specialties included 355 physicians (31.2% and 58.2% of participants, respectively)
|
Always or usually
|
Sometimes
|
Never or rarely
|
Total
|
|
Geriatricians-N (%)
|
25-45 years
|
45 (68.2%)
|
15 (22.7%)
|
6 (9.1%)
|
66 (100%)
|
|
46-85 years
|
32 (55.2%)
|
15 (25.9%)
|
11 (19.0%)
|
58 (100%)
|
|
Total
|
77 (62.1%)
|
30 (24.2%)
|
17 (13.7%)
|
124 (100%)
|
|
Neurologists-N (%)
|
25-45 years
|
105 (77.2%)*
|
21 (15.4%)
|
10 (7.4%)
|
136 (100%)
|
|
46-85 years
|
51 (53.7%)*
|
28 (29.5%)
|
16 (16.8%)
|
95 (100%)
|
|
Total
|
156 (67.5%)
|
49 (21.2%)
|
26 (11.3%)
|
231 (100%)
|
Notes: alpha = 0.0083; *p < 0.0001; Cramer's V 25%.
Amongst geriatricians, there was no difference between the two age groups in disclosing
the AD diagnosis ([Table 3]). However, amongst neurologists, the youngest group (25-45 years old) significantly
reveal more the diagnosis always or usually than the older group (46-85 years old).
Issues generally causing concern surrounding the disclosure of the diagnosis to pwAD
are summarized in [Figure 1]. The geriatricians', neurologists' and psychiatrists' main concerns are the possibility
of causing psychological distress to the affected individual in 70.2%, 68.4% and 62.1%,
respectively, and to destroy the person's hope or motivation in 49.2%, 61.9% and 51.7%,
respectively.
The main factor influencing whether or not to disclose the AD diagnosis to the pwAD
was the wish to be told (74.3%), as seen in [Figure 2]. For neurologists, the decision to disclose has been taken based on the pwAD desire
to know the diagnosis and the family's opinion about disclosure. Geriatricians mainly
consider the pwAD desire and the stage of dementia, while psychiatrists were more
influenced by the degree of diagnostic certainty.
When physicians were asked about their opinion on the pwAD desire to know their diagnosis,
75% believe that they do want to know and 25% believe they do not. Regardless of the
frequency with which neurologists and geriatricians reveal the diagnosis of AD, they
believe pwAD want to know their own diagnosis (p = .000; Cramer's V 43%). On the other
hand, if these professionals were diagnosed with AD, 96% would like to know their
own diagnosis, as exemplified in [Figure 3]. The same p-value was found for this variable, except for the professionals who
only sometimes reveal the diagnosis (p = 0.368).
Fig. 3 Opinion about the Alzheimer's disease diagnosis disclosure.
The reasons why professionals would like to know their own diagnosis were related
to the intention to prepare for the future (49.4%) and to deal in advance with issues
associated with the management of their assets (25.2%).
The nomenclature in referring to the disease used by the physicians was also examined:
84.7% of the respondents always used clear terminology such as AD or dementia, and
the rest used a variety of terms including “memory impairment,” “forgetfulness,” “senility”
or “sclerosis”, as shown in [Figure 4].
Fig. 4 Nomenclature used by physicians to diagnose patient.
For physicians who assisted pwAD for more than 10 years (n = 259), 33.2% changed their
conduct, now revealing the diagnosis. The main reason for the change in the conduct
of physicians was that the diagnosis became more accurate with the development of
new methods, such as biomarkers (24.1%); however, many participants could not specify
the main reason for the change in their behavior (38.2%). Meanwhile, 17.8% still do
not reveal the diagnosis and 49.0% continue to reveal the diagnosis. The main cause
of persistence with the approach of not revealing the diagnosis was fearing of the
pwAD's psychological reaction.
In relation to the discovery and the use of biomarkers in the diagnosis, 46.1% of
physicians had their conducts influenced, and among them, the main factor which explains
this bias is the higher diagnostic specificity (88.0%). Among the group of physicians
who were not influenced, the major reason was not having access to this resource (55.6%).
There was no statistical difference between the specialties of Neurology and Geriatrics
in relation to the influence or not of biomarkers on their medical conduct (p = 0.058;
Odds Ratio (OR) 1.54; Confidence Interval (CI) 0.98 - 2.41). Accordingly, the age
groups 25-45 and 46-85 were not associated with the influence or not of biomarkers
on the medical conduct among neurologists and geriatricians (p = 0.990; OR 0.99; CI
0.65 - 1.52).
Regarding the relationship between the presence of clinical symptoms of AD and biomarkers,
in cases with positive biomarkers but without manifest symptoms, only 36.8% of all
physicians would diagnose AD. Nevertheless, in the presence of specific clinical symptoms
without biomarkers, 84.9% of all physicians would make the diagnosis. There was no
statistical difference between the biomarkers and specialties, age group, gender or
frequency in which AD diagnosis is revealed (p > 0.05).
DISCUSSION
Changes in the medical environment
Medical conduct towards AD diagnostic disclosure has changed over the years. In comparison
to the study carried out by Raicher et al.[9] in 2008 also in Brazil, changes in the medical environment have been responsible
for an increase in disclosure. In 16 years, the percentage of physicians who always
or usually disclose the diagnosis has risen from 44.7% to 66.7%. On the other hand,
the percentage of physicians who rarely or never do it has reduced from 25.4% to 12.3%,
within the same period of time.
It is interesting to notice that younger specialists (aged 25 to 45 years) tend to
disclose the diagnosis more often than older practitioners (aged 46 to 85 years),
with a significant difference for neurologists from the two age groups. This feature
is in agreement with the post-Flexner medical teaching models, which, as mentioned
before, value patient autonomy, and most likely influenced the formation of younger
physicians rather than the older ones.[8] Besides, for physicians working with AD for more than 10 years, 33.2% of them changed
their behavior about diagnostic disclosure, now revealing the diagnosis, which is
associated with a change in medical culture per se, not only among newly graduated generations.
Nevertheless, there still is, as noticed in 2008, a marked inconsistency between the
physician's conduct towards pwAD and the wishes they would have if they would develop
AD. The physicians consider that 74.8% of pwAD want to know their own diagnosis, meanwhile
96.2% of the physicians would want to know their own diagnosis. We have reasons to
believe that the professionals recognize the importance of preparing for the future
and dealing with issues associated with asset-management. Even so, they are discouraged
to disclose the diagnosis due to several factors, such as the family members' opinion;
pwAD desire to know the diagnosis; the remains of a paternalistic medical culture;
among other motives.
Also in that matter, the use of precise terminology has not changed significantly
in comparison to 2008: 84.7% of physicians use precise terminology to address the
diagnosis, such as AD or dementia, in comparison to 85.2% in 2008.[9]
Mental health issues
There is still great concern with the pwAD mental health regarding diagnostic disclosure,
especially in relation to the fear of destroying their hope and motivation, thus causing
psychological distress. Furthermore, mental health issues are the main justification
of physicians who did not change their approach and keep not disclosing the diagnosis.
This was also seen in the 2008 study,[9] suggesting that this barrier has not yet been overcome.
It is known that dementia and depression are correlated. Depression is a risk factor
for dementia, and it is under discussion if it is also a prodromal stage of AD.[10] Also, in pwAD, the onset of depression can exacerbate cognitive and functional impairment,
reducing quality of life.[11] This can explain, although not justify, the decision of physicians not to disclose
the diagnosis of dementia, considering the close relationship between cognitive and
psychological functionality.
Besides, data shows that psychiatrists (75.9%) tend to disclose the diagnosis “always
or usually” more frequently than neurologists (67.5%) and geriatricians (62.1%). Although
the number of psychiatrists was much lower than the other two groups, these differences
may be explained by the lack of medical training on mental health, seeing that psychiatrists
are most likely better trained to deal with those concerns.
The emergence of AD biomarkers
When considering the main characteristics that influence the decision to disclose
or not the diagnosis, an important factor is the degree of diagnostic certainty. Concerning
this subject, the detection of disease-specific biomarkers in cerebrospinal fluid
(CSF) or with positron emission tomography contributes to a more accurate diagnosis
of AD, even in early disease stages.[12]
Accordingly, the degree of certainty of the diagnosis influences the decision to disclose
or not the diagnosis, therefore making the emergence of biomarkers an important factor
in favor of the disclosure. Despite the family members' opinions, the pwAD desire
to know and the dementia stages are still important influencers on the decision. The
positivity of biomarkers is the main declared reason for a change in physicians' behavior
(24.1%) in favor of disclosing the diagnosis. When clinical symptoms are accompanied
by positivity of biomarkers, diagnostic disclosure would occur in 84.9% of the cases.
Nevertheless, with the presence of biomarkers, but in the absence of clinical symptoms
or when symptoms are nonspecific, only 36.8% of physicians are in favor of disclosure.
In this sense, it should be questioned whether revealing the diagnosis would have
any benefit in relation to the pwAD quality of life and mental health, because no
specific treatments for these early stages are currently available.
At the moment, the Brazilian Academy of Neurology (BAN) indications for CSF examination
are displayed on [Table 4].[13]
Table 4
Describes the mainly indications for CSF examination by BAN
|
1. Investigation of presenile dementia (before 65 years)
|
|
2. Cases with atypical clinical presentation or course
|
|
3. Communicating hydrocephalus
|
|
4. Any evidence or suspicion of inflammatory, infectious, or prion disease of the
central nervous system
|
|
5. If after the entire diagnostic process the etiology of the dementia syndrome remains
doubtful
|
This study aimed to assess physicians' conduct towards AD diagnostic disclosure in
Brazil, by also evaluating behavioral changes over time, drawing parallels with a
similar study carried on in 2008.[9] It is interesting to notice changes in the medical environment during those 15 years,
being the main noticeable result of the study, shown as the increase in revealing
the diagnosis to the patients and their families. Mental health issues are still the
main impeditive factor, counterbalanced by the arisal of biomarkers as a motivating
factor for the disclosure.
