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Abstract
The purpose of this study was to establish prevalence and five-year incidence, and explore functional decline among older Mexican
Americans with Parkinson’s disease (PD). Using data from the Hispanic EPESE, baseline characteristics were compared across PD response
profiles. Weighted generalized estimating equations (GEE) modeled the association between PD and outcomes. Prevalence was 1.30%;
incidence at wave 4 was 1.18%. Those with prevalent PD had worse function than those without PD at each wave. Progressive functional decline
across time was observed among those with PD. Older Mexican Americans with PD often live in the community, and those who provide care for
them may be overburdened.
Ó 2008 Elsevier Ltd. All rights reserved.
1353-8020/$ - see front matter Ó 2008 Elsevier Ltd. All rights reserved.
doi:10.1016/j.parkreldis.2007.11.015
398 M.G. Schneider, M. Shardell / Parkinsonism and Related Disorders 14 (2008) 397e406
in English by trained interviewers, lasting approximately 90 min, including measure of chronic disease status (heart attack, stroke, cancer, hypertension,
15 min for medical assessments (blood pressure, weight, height, vision testing, arthritis, hip fracture, or diabetes), as were self-rated health assessments,
and performance-based tests of physical function). Data have been collected in shown to be strongly related to objective measures of health and to mortality
four waves between 1993 and 2001. Of the 3050 subjects at baseline, follow-up [44,45].
data were collected on 2439 subjects in 1995e1996, on 1980 subjects in
1998e1999, and on 1685 in 2000e2001. The response proportion at baseline 2.2.7. Body mass index (BMI)
(1993e1994) was 86%. A more detailed description of the rationale, methods Body mass index was calculated by dividing respondents’ weight (mea-
and sample characteristics can be found elsewhere [12]. Other diseases inves- sured in kilograms) by the square of height (measured in meters). Body
tigated using these data have included arthritis, diabetes, stroke, hypertension, mass index <22 has been associated with functional limitations.
heart attack, and cancer [18e24].
2.2.8. Smoking status
2.2. Measures Smoking (current/former/never) has been associated with PD [46,47].
for each model. Global chi-square likelihood ratio tests were used to assess the the H-EPESE cohort was female. Those with prevalent PD
association between PD status and each outcome over time. Wald tests were and non-prevalent PD were the oldest, while those never diag-
performed to assess time-specific associations between PD and each outcome.
nosed with PD were the youngest. All baseline factors except
smoking status and language of interview varied significantly
3. Results across PD response profiles. Those with follow-up data had
better cognition and were less depressed at baseline than those
Among 3050 participants enrolled in the H-EPESE, 2438 lost to follow-up ( p-value < 0.01; data not shown). Among
were interviewed at the second wave. Thirty-four of those those still in the study at wave 2, those interviewed at wave
interviewed reported having been diagnosed with PD, preva- 4 had better function at wave 2, were younger and more likely
lence 1.30% (95% CI: 0.86%, 1.97%). Estimated prevalence to be female, had fewer co-morbidities, higher body mass in-
was higher among women (1.60%, 95% CI: 0.94%, 2.70%) dex, better cognition, fewer depressive symptoms, and better
compared to men (0.90%, 95% CI: 0.49%, 1.65%), but not self-rated health than those who were missing at wave 4
significantly so ( p-value ¼ 0.16). Among 1686 participants (data not shown). In addition, those who completed all four
interviewed at the fourth wave, 21 were classified as having waves of the study were found at wave 1 to be younger, had
incident PD, estimated five-year incidence was 1.18% (95% fewer ADL and IADL difficulties, higher POMA scores,
CI: 0.74%, 1.88%). Estimated five-year incidence was similar higher body mass indexes, higher cognitive functioning, fewer
for women (1.19%, 95% CI: 0.64%, 2.20%) compared to men depressive symptoms, better self-rated health and life satisfac-
(1.17%, 95% CI: 0.57%, 2.38%), p-value ¼ 0.97. Table 1 tion, and less time in the US compared to those who did not
shows age- and sex-specific prevalence and five-year inci- complete all four waves of the study (not shown).
dence. Prevalence and five-year incidence were higher among More participants with prevalent PD were interviewed in
those who were at least 70 years old compared to those who English (although not significantly so), and had been in the
were 65e70 years old (prevalence: 2.02% versus 0.42%, inci- US longer. Among the 3050 participants who began the study,
dence: 1.70% versus 0.68%). In addition, among those 65e70 by wave 4, 940 (31%) died, 131 (4%) refused to participate,
years old, prevalence and five-year incidence were higher for and 297 (10%) were lost to follow-up. Within the year prior
men compared to women (prevalence: 0.49% for men versus to visit two, 486 (20% non-PD, 29% PD) of those interviewed
0.34% for women, p-value ¼ 0.65; incidence: 1.28% for men had been hospitalized at least once. Also, 86% without PD and
versus 0.26% for women, p-value ¼ 0.10), whereas, among 93% with PD visited a doctor at least once. Those with PD vis-
those aged at least 70 years old, prevalence and incidence ited the doctor a median (inter-quartile range [IQR]) 9 (3e12)
were higher for women compared to men (prevalence: times, while those without PD visited the doctor a median
2.47% for women versus 1.39% for men, p-value ¼ 0.21; (IQR) of 4 (2e12) times. During the year prior to wave 3,
incidence: 2.09% for women versus 1.04% for men, p-value ¼ 464 (23% non-PD, 35% PD) of those interviewed had been
0.21). Only 13 of the 34 with prevalent PD remained in the hospitalized and 89% of those without PD and 100% of those
study (18 died, three were lost to follow-up). In addition, with PD visited a doctor at least once; 43 of them (41 non-PD,
two participants with missing PD status at the second wave 1 PD, 1 incomplete PD status) required some assisted living.
reported PD diagnosis at wave 4. Fig. 1 shows the flow of par- Those with PD visited the doctor a median (IQR) of 10.5
ticipants throughout the study. (3.5e19.5) times on average (SD), while those without PD vis-
Baseline characteristics across PD response profile are pre- ited the doctor a median (IQR) 4 (2e10) times. Lastly, 389
sented in Table 2. The overall baseline mean (SD) age in the (23% non-PD, 30% incident PD, 62% prevalent PD) of those
H-EPESE cohort was 73.1 (6.8) years. Fifty-eight percent of interviewed at wave 4 had been hospitalized during the
Table 1
Age and sex-specific prevalence and five-year incidence
Age Males (N ¼ 1047) Female (N ¼ 1471) Overall (N ¼ 2518) P-value*
# (%) 95% CI # (%) 95% CI # (%) 95% CI
Prevalence
65e70 3(0.49) (0.14%, 1.69%) 4(0.34) (0.11%, 1.03%) 7(0.42) (0.17%, 1.04%) 0.65
70þ 9(1.39) (0.69%, 2.79%) 18(2.47) (1.38%, 4.38%) 27(2.02) (1.27%, 3.19%) 0.21
Males (N ¼ 654) Female (N ¼ 1031) Overall (N ¼ 1685)
Incidence
65e70 6(1.28) (0.54%, 3.01%) 1(0.26) (0.04%, 1.51%) 7(0.68) (0.31%, 1.51%) 0.10
70þ 3(1.04) (0.30%, 3.52%) 11(2.09) (1.09%, 3.97%) 14(1.70) (0.95%, 3.01%) 0.32
*Age-specific tests comparing men and women.
Prevalence: Overall prevalence 1.30% (95% CI: 0.86%, 1.97%). Prevalence among women (1.60%, 95% CI: 0.94%, 2.70%). Prevalence among men (0.90%, 95%
CI: 0.49%, 1.65%). P-value for sex: 0.16.
Incidence (for five years from wave 2 to wave 4): Overall incidence 1.18% (95% CI: 0.74%, 1.88%). Incidence among women (1.19%, 95% CI: 0.64%, 2.20%).
Incidence among men (1.17%, 95% CI: 0.57%, 2.38%). P-value for sex: 0.97.
400 M.G. Schneider, M. Shardell / Parkinsonism and Related Disorders 14 (2008) 397e406
Wave 1: N=3050
Wave 2:
Wave 3:
Returned Dead Refused Cannot Locate Returned Dead Refused Cannot Locate Returned Dead Refused Cannot Locate
N=1899 N=376 N=76 N=88 N=39 N=11 N=40 N=16 N=43 N=33 N=6 N=186
Wave 4:
previous year, 24 (23 non-PD, 1 incident PD) of them required P-value ¼ 0.001, Table 3, model 2), although estimates were
some assisted living. Eighty-nine percent of those without PD attenuated relative to the unadjusted association (Table 3,
visited a doctor while 100% of those with prevalent PD or in- model 1). At wave 2, participants reported dependency for
cident PD visited a doctor. Participants were not asked about an average (SD) of 2.30 (3.20) IADLs. The mean (SD) number
the number of doctor visits in the year prior to wave 4. It is of dependent IADLs at waves 3 and 4 were 2.61 (3.46) and
unknown whether those diagnosed with PD received their di- 2.65 (3.46), respectively. Table 4 presents the estimated asso-
agnosis within one year of a follow-up visit; therefore it is un- ciation between PD and IADL dependency. Those with prev-
known whether differences in number of visits between those alent PD had more IADL dependency than those without PD
with and without a PD diagnosis are responsible for at each time (Adjusted Mean Difference [95% CI]: wave 2,
differential PD diagnosis or are a consequence of earlier diag- 3.80 [2.20, 5.40]; wave 3, 2.48 [0.63, 4.33]; wave 4, 4.25
noses. At wave 2, when those who never become diagnosed [1.79, 6.74]; Table 4, model 2). Those with incident PD had
with PD are differentiated from those who have incident PD more IADL dependency than those without PD at wave 4
at wave 4, we see that the health care utilization among those (Adjusted Mean Difference [95% CI]: 1.30 [0.04, 2.53];
with incident PD is similar to those with prevalent PD: 95% of Table 4, model 2). There was a minor change in the estimate
those who will be diagnosed with PD between waves 2 and 4 after controlling for baseline confounders (Table 4, model
visited a doctor during the year prior to wave 4 for a median 1). The overall adjusted associations between PD and IADL
(IQR) of 8 (3e12) times. dependency were weaker than the unadjusted associations
At wave 2, study participants reported dependency for an (Table 4, model 1), but remained statistically significant
average (SD) of 0.64 (1.79) ADLs. The mean (SD) number (Global P-value <0.0001 Table 4, model 2).
of dependent ADLs at waves 3 and 4 were 0.93 (2.02) and We also examined the association between PD and physical
0.96 (2.01), respectively. Those with prevalent PD had more performance measures (POMAs). The average (SD) POMA
ADL dependency than those without PD at each wave score was 7.53 (3.58) at wave 2. The mean (SD) POMA score
(Adjusted Mean Difference [95% CI]); wave 2,2.17 [0.44, at waves 3 and 4 were 6.36 (4.04) and 6.10 (3.62). Those with
3.89]; wave 3, 1.08 [0.34, 2.50]; wave 4, 3.34 [1.18, 5.50]; prevalent PD had worse function than those without PD at
see Table 3, (model 2). Those with incident PD had more each wave (Adjusted Mean Difference [95% CI]: wave 2,
ADL dependency than those without PD at wave 4 (Adjusted 0.98 [4.00, 2.04]; wave 3, 1.78 [4.58, 1.02]; wave 4,
Mean Difference [95% CI]: 0.51 [0.35, 1.38]; Table 3, model 3.50 [5.69, 1.32]; Table 5, model 2). Those with incident
2), but not significantly so. The overall adjusted association PD performed worse than those without PD at wave 4
between PD and ADL dependency was significant (Global (Adjusted Mean Difference [95% CI]: 0.49 [1.77, 0.78];
Table 2
Baseline characteristics of the study sample
Characteristic Prevalent PD Incident PD Never PD Non-prevalent PD Incomplete PD status Overall H-EPESE cohort P-value*
N ¼ 34 N ¼ 21 N ¼ 1630 N ¼ 833 N ¼ 532 N ¼ 3050
Age N ¼ 34 N ¼ 21 N ¼ 1630 N ¼ 833 N ¼ 532 73.1 (6.8) <0.0001
75.6 (6.8) 74.3 (5.9) 71.8 (5.7) 75.3 (7.3) 73.3 (7.9)
Married N ¼ 34 N ¼ 21 N ¼ 1630 N ¼ 833 N ¼ 532 1693 (55%) 0.017
401
402 M.G. Schneider, M. Shardell / Parkinsonism and Related Disorders 14 (2008) 397e406
Table 3 Table 5
Mean differences in number of ADL dependencies between those with and Mean differences in POMA score between those with and without PD (lower
without PD (higher scores indicate greater ADL dependency) scores indicate worse physical function)
Model 1: mean difference Model 2 (model 1 þ covariates): Model 1: mean difference Model 2 (model 1 þ covariates):
(95% confidence interval) mean difference (95% (95% confidence interval) mean difference (95%
p-value confidence interval) p-value p-value confidence interval) p-value
Wave 2 Wave 2
No PD 0.00 (reference) 0.00 (reference) No PD 0.00 (reference) 0.00 (reference)
Prevalent PD 2.67 (1.31, 4.04) 1.73 (0.19, 3.27) Prevalent PD 2.17 (4.37, 0.13) 0.98 (4.39, 2.44)
p* < 0.0001 p* ¼ 0.027 p* ¼ 0.051 p* ¼ 0.58
Wave 3 Wave 3
No PD 0.00 (reference) 0.00 (reference) No PD 0.00 (reference) 0.00 (reference)
Prevalent PD 2.06 (0.80, 3.31) 1.08 (0.51, 2.67) Prevalent PD 3.41 (5.37, 1.46) 2.46 (5.49, 0.57)
p* ¼ 0.0001 p* ¼ 0.18 p* ¼ 0.001 p* ¼ 0.11
Wave 4 Wave 4
No PD 0.00 (reference) 0.00 (reference) No PD 0.00 (reference) 0.00 (reference)
PD PD
Prevalent PD 3.80 (2.27, 5.33) 3.24 (1.10, 5.39) Prevalent PD 4.48 (5.90, 3.07) 3.76 (5.98, 1.54)
p* < 0.0001 p* ¼ 0.003 p*<0.0001 p* ¼ 0.001
Incident PD 1.16 (0.30, 2.02) 0.54 (0.36, 1.45) Incident PD 1.12 (2.30, 0.05) 0.72 (1.92, 0.48)
p* ¼ 0.008 p* ¼ 0.23 p* ¼ 0.061 p* ¼ 0.24
Global test <0.0001 0.001 Global test <0.0001 0.014
P-value# P-value#
*p refers to time dependent tests comparing those with prevalent PD (waves *p refers to time dependent tests comparing those with prevalent PD (waves
2e4) and those with incident PD (visit 4) to those with no PD (reference 2e4) and those with incident PD (wave 4) to those with no PD (reference
group). group).
# #
Global test P-value refers to the overall comparison between those with (prev- Global test P-value refers to the overall comparison between those with (prev-
alent and incident) PD and without PD across all three waves (waves 2e4). alent and incident) PD and without PD across all three waves (waves 2e4).
suggested that underestimation of PD in minority groups is Access to care is suggested to make the most difference in
particularly common [15,50,51]. delaying or slowing down functional decline among function-
Those with PD visited the doctor more frequently than ally independent elderly persons [57]. Early initiation of dopa-
those without PD. It is unclear whether increased visits are minergic agents in the treatment of PD may prevent loss of
a result of PD symptoms, or if potentially differential diagno- mobility and suboptimal care of PD may accelerate disability
sis of PD resulted from differential health care utilization. progression [58,59]. Physical function in those with PD is as-
Higher prevalence among women may reflect increased health sociated with economic resources as PD patients may incur
care utilization. Those with incident PD at wave 4 had similar high expenses, including direct health care costs (drugs, phy-
health care utilization at wave 2 as those with prevalent PD, sician services, and hospitalization) and indirect costs (loss
supporting the argument of under-diagnosis, and validating of wages or caretakers’ wages) [58,60e63]. The cost of pre-
concern that those who are diagnosed are likely the most miums, co-payments, uncovered hospital portions and uncov-
symptomatic. ered services can be substantial [53,64e68]. Insurance status
Progressive functional decline across time was observed contributes most to disparities in the financial burden of
among those with PD, assessed by both self-report and objec- prescription drugs among Mexican Americans [53,63,65,67].
tive measures. Although estimates were attenuated when Reduced supplemental insurance may also affect receipt of
potential confounding variables were controlled, the pattern specialty care, including neurologists. Research suggests that
remained unchanged. Differences in physical performance as- being white, having more education and higher income, and
sessments showed a monotone pattern of more rapid decline having insurance to supplement basic Medicare coverage
among those with prevalent PD compared to those without promotes receipt of specialty care [53,56,69]. Working age
PD. Those with PD also had more co-morbid conditions disadvantages place foreign born older Mexican Americans
than those without PD. However, self-reports of ADL and at risk of inadequate coverage in old age with no supplemental
IADL dependency showed a non-monotone pattern of differ- Medigap coverage or retirement income [52,56]. Furthermore,
ences: smaller differences in dependencies were observed at limited English proficiency is associated with having poor
wave 3 than at waves 2 and 4. These patterns are likely par- health, no health insurance, and no regular source of care
tially due to missing data, as those with the worse function [70]. The high cost of adequate treatment for PD may there-
and more dependencies at wave 2 are missing more often at fore preclude universal access to older Mexican Americans
wave 3 than those with better function and fewer dependen- [67,68]. It is therefore a plausible hypothesis that reduced
cies, where most of those who were missing at wave 3 were access to care in this group may have contributed to the func-
dead. However, this pattern of differences persisted among tional decline we observed. Reduced access may also have
those present at both waves 2 and 3 (data not shown). One ex- contributed to under-diagnosis, particularly among the more
planation is that those who remained in the study at wave 3 are recent older immigrants. Future PD studies addressing ineq-
a select group; first, by being alive, and second, they may have uities in access to care are recommended [68].
perceived more improvements or stability in ADLs and IADLs PD in its late stages is associated with substantial health
compared to drop-outs who are still alive. and financial burden to families [8,71]. Community-dwelling
Although it is unknown to what extent reduced access to Mexican Americans have low rates of institutionalization.
care (e.g. supplemental insurance, availability of specialist Therefore, families are more likely to care for their relatives
care) among the minority elderly has impacted racial/ethnic with PD, particularly the foreign born, than are those in other
differences in PD prevalence, the most likely explanation for racial/ethnic groups [71e73]. These family members may be
our disparate findings is reduced access to care. The problem overburdened as serious impairment may eventually over-
may be particularly acute among the more recent immigrants whelm supportive networks [26,72,74].
[52]. Mexican Americans are particularly economically disad- The results of this study must be viewed with the follow-
vantaged. They have lower education and incomes than other ing limitations in mind. Reliance upon self-reports of diag-
Hispanic groups [12,53]. Mean education in our study was nosed illness without biological verification may result in
between 4th and 5th grades, below that of the general popula- misclassification, and recall may be poorer for older than
tion of the same age [54]. In addition, half of our survey for younger people. However, it is more plausible that un-
respondents had household incomes below the poverty level der-diagnosis rather than over diagnosis occurred owing to
and nearly half were foreign born [53]. More participants the low levels of health care utilization in this population
with prevalent PD preferred to be interviewed in English (al- [55]. Such potential differential diagnosis could lead to biased
though not significantly so), and had been in the US longer, estimation of associations, as only those with the most severe
suggesting under-diagnosis of the recent immigrants. Mexican symptoms are likely to be diagnosed, and could also help ex-
Americans are less likely than other older Hispanic elderly to plain gender differences. It is also plausible that those with
visit physicians [55]. Low Medicare coverage and reduced undiagnosed PD have worse physical function than those
supplemental insurance is most pronounced among recent without PD, suggesting that our estimates are conservative.
immigrants [12,16,53]. Previous studies using this data have Although use of self-report measures to determine disability
indicated vulnerabilities resulting from a lack of private could be a limitation in that patterns may differ from perfor-
Medigap supplemental coverage including limitations in mance test patterns because self-reports measure perceptions
ADLs and increased mortality [53,56]. that may be influenced by external factors such as culture
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