Title: Symptom Burden in the Chronically Ill Homebound
Authors: Ania Wajnberg, MD,1 Meng Zhang, MD,1 Kristofer L Smith, MD, MPP1 Katherine
Ornstein MPH,1,2 Theresa Soriano MD MPH1
1
Mount Sinai Visiting Doctors Program, Division of General Internal Medicine, The Samuel
Bronfman Department of Medicine, Mount Sinai School of Medicine, New York, NY;
2
Mailman School of Public Health, Columbia University, New York, NY
Corresponding Author:
Ania Wajnberg, MD
One Gustave L. Levy Place
Box 1216
New York, NY 10029
Phone: 212-241-4141
Fax: 212-426-5108
Email: ania.wajnberg@mountsinai.org
Funding sources: Chiang Family Foundation
Prior Presentations:
Palliative Symptom Burden in an Urban Homebound Population. Annual Assembly of the American Academy
of Hospice and Palliative Medicine, Boston, Massachusetts, March 2010.
Illness and Palliative Symptom Burden in the Homebound Elderly. Presidential Poster Session, Annual
Scientific Meeting of the American Geriatrics Society, Orlando, Florida, May 2010.
Background:
Elderly patients living with multiple chronic medical conditions pose a disproportionate burden on
our society and the US health care system.i The prevalence of chronic conditions rises with ageii
and by 2030, almost 20% of the US population will be greater than 65 years of age with an
increase by over 50% in those greater than 85 years of age.iii A large portion of these elderly,
chronically ill patients suffer from significant functional impairment that leaves them homebound
and unable to access routine medical care. The number of these homebound seniors already
exceeds two million, and is expected to reach over three million in the next ten years.iv
Homebound patients often have conditions associated with substantial symptom burden such as
dementia, congestive heart failure, depression, and cancer.v Short term mortality rates are high - nearly one in five die each year.viviiviiiix Furthermore, issues such as poverty, poor health
literacy, and limited social support complicate timely access to quality care.v-ix Even those who
are able to access outpatient care may not be able to find appropriately trained and experienced
providers to manage their complex primary care needs and substantial symptom burden.
It has been increasingly recognized that high quality outpatient care includes palliative care.x
Symptom management, skilled communication, and psychosocial and spiritual support offered
by palliative care specialists, however, continue to be mostly available in the inpatient or
outpatient hospice setting. This is despite evidence showing that in home palliative care for the
vulnerable elderly increases patient satisfaction and cuts costs.xi The current reimbursement
incentives and the lack of sufficient number of palliative trained providers are a few of the
factors contributing to this gap. Given these realities, it is essential to identify patient cohorts
with high symptom burden who would benefit from the limited palliative care resources
available in the outpatient setting.
To document the degree of symptom burden in a chronically-ill homebound population that may benefit
from in-home palliative care, we conducted a cross-sectional survey of patients newly enrolled in
an urban home-based primary care (HBPC) program.
Methods
Setting
This study was conducted at the Mount Sinai Visiting Doctors (MSVD) program, a large HBPC
program based in New York City. Previously described in detail,xii the program employs 14
physicians, 2 nurse practitioners (NP), 2 nurses, 3 social workers, and 4 clerical staff to serve
over 1000 homebound patients annually. Patients are referred from a variety of sources
including the inpatient setting, outpatient clinics, community agencies, word of mouth, and
nursing agencies. A comprehensive initial visit is performed for all newly enrolled patients by a
primary care physician (PCP) during which standardized assessments are performed measuring
functional status, cognition, and symptom burden.
PCPs visit patients on average once every 2 months, and physicians are able to make urgent
home visits if clinical need arises. Patients and their families are able to contact a physician 24
hours/day, 7 days/week by telephone. High priority is placed on patient quality of life, comfort,
and minimizing unnecessary hospitalizations.
Subjects
Between September 2008 and February 2010, data was collected on all patients newly enrolled
in the MSVD program. Eligibility criteria for the MSVD program includes living in Manhattan
above 59th street, age >18 years, and meeting the Medicare homebound definition - able to leave
home only with great difficulty and for absences that are infrequent or of short duration. Patients
are enrolled regardless of insurance status, co-morbidities, or cognitive status. This study
protocol was approved by the Mount Sinai School of Medicine Institutional Review Board.
Measures
The Edmonton Symptom Assessment Scale (ESAS) was administered to all study participants.
The ESAS consists of ten visual analogue scales scored from 0, indicating no symptoms, to 10,
the worst possible symptom burden. The symptoms assessed include pain, tiredness, nausea,
depression, anxiety, drowsiness, appetite, well-being, shortness of breath, and other (to be filled
out by the provider).xiii The ESAS tool was chosen as it is validated in a number of care
settingsxiv, and is validated for both patient and/or caregiver report. Severe symptom burden is
defined by a score of >6 on one or more individual symptoms. Moderate symptom burden is
defined by a score of >3 and <7 on one or more individual symptoms, mild symptom burden is
defined as a score of 1-3 on one or more individual symptoms, and a score of 0 indicates no
symptoms.xv
Data Collection
Patients’ PCPs administered the ESAS as a routine part of the comprehensive initial home visit.
ESAS was completed either by the patient alone, caregiver alone, or caregiver assisted. Data on
patient demographics, co-morbidities, Palliative Performance Scale score (PPS), Karnofsky
performance status score (KPS), and functional status (activities of daily living (ADL) and
instrumental activities of daily living (IADL)) were also collected at the initial visit by the
MSVD provider.
Analysis
Patient ESAS scores were stratified into none, mild, moderate, or severe symptom burden
(defined above). Investigators completed bivariate analyses looking for associations between
ESAS score and disease state using Pearson’s chi square test. All analyses were completed using
STATA.
RESULTS
Between September 2008 and February 2010, 475 patients were newly enrolled in the MSVD
program. Providers recorded ESAS scores for 318 patients (67%). Reasons for missing data
included: 56 patients/caregivers (12%) were unable to complete the survey, 16 (3%) refused, and
82 (17%) unknown. Among those with ESAS scores, the majority was over 80 years of age
(68%) and female (75%). Thirty six percent of these patients were white, 22% were black, and
32% were Hispanic/Latino. A substantial portion (43%) had Medicaid and lived alone (32%).
Disease burden was considerable-- 49% had dementia, 26% had depression, 18% had congestive
heart failure, 13% had cancer and 4% had COPD. 91% of patients required assistance with one
or more ADLs and 99% required assistance with one or more IADLs. PPS and KPS mean score
was XX and XX. For these measures, there were no statistically significant differences between
the patients for whom ESAS data was collected and those who were missing.
The most commonly reported symptoms were loss of appetite, lack of well-being, tiredness, and
pain (Table 1). Almost half (43%) reported severe burden on one or more symptoms. Another
33% had at least one moderately troubling symptom and only 14% reported no symptoms. The
symptoms which had the highest average score were depression, pain, appetite, and shortness of
breath. Patients reported difficulty with a median of 3 different symptoms at baseline, 2 of which
were moderate/severe.
Those patients with severe symptom burden were statistically significantly more likely to suffer
cancer (p<0.01) or depression (p<0.01) and significantly less likely to suffer from dementia
(p<0.01). There was no statistically significant difference in ESAS score severity between
patients with and without congestive heart failure, chronic obstructive pulmonary disease,
diabetes or stroke.
DISCUSSION
This study demonstrated a significant palliative symptom burden in a previously uninvestigated
population of elderly homebound with multiple co morbidities.
In our cohort, patients
commonly suffered from loss of appetite, lack of well-being, tiredness and pain. Their most
severe symptoms were depression, pain, appetite, and shortness of breath.
Cancer and
depression were associated with higher symptom scores, whereas dementia was associated with
lower symptom scores.
These findings show that symptom burden in the chronically ill
homebound is similar in severity and scope to patients referred to hospice or to hospitalized
cancer patients. In 2003, Potter et al found that patients referred to hospice had high symptom
burden (7.21 median ESAS score) with the most common symptoms being pain (64%), anorexia
(34%), and constipation (32%).xvi Similarly, in cancer patients attending an outpatient palliative
care clinic, the most frequent and also most severe self-reported symptoms were fatigue (77%,
median ESAS score 7), pain (75%, median ESAS score 7), and lack of appetite (66%, median
ESAS 5).xvii
The high symptom burden in the homebound population underscores the importance of symptom
recognition and management for those with advanced illness from chronic medical conditions. This
should be considered as the United States health care system restructures itself to meet the needs
of our most vulnerable seniors. Finding new ways to address their health care needs is a growing
imperative as the number of homebound patients will increase by millions in the coming
decades. Furthermore, the cost of caring for the elderly with multiple chronic medical problems
is becoming an increasing burden on the health care system, with 10% of Medicare beneficiaries
driving approximately two thirds of Medicare costs.xviii Some of this high cost may be driven by
emergency department and hospital use by patients seeking relief for untreated symptoms.
With 76% of patients in our cohort reporting moderate to severe symptom burden, the need for
the incorporation of palliative care into models of care for the homebound is highlighted. The
integration of palliative care into primary care for the chronically ill should be applied in order to
lessen symptom burden and alleviate patient suffering. Internal medicine training largely centers
on chronic disease management, but little focus has been placed on concurrent treatment of
symptom burden. Other barriers to effective palliative care for this population includes program
design with adequate staffing to effectively use physicians, nurses, social workers, hospice,
support staff, and case management; provide regular and urgent visits, and to be accessible to
patients 24 hours/day.xix Payment incentives must be reworked in order to more effectively
incentivize the primary care work force to provide for the symptom burden of the chronically ill
elderly.
LIMITATIONS:
Although ESAS has been well validated in the inpatient setting, less data is available on its use in
homebound patients as well as in outpatient demented patients. The 82 missing ESAS scores
may have led to selection bias.
The inverse association observed between dementia and symptom burden may be secondary to
reporting bias, with demented patients less able to report subjective symptoms to caregivers or to
PCPs. Patients with advanced dementia pose a particular challenge in terms of symptom
assessment and recognition and there are other scales that may be more appropriate in this
population.
Although ESAS allowed for better symptom identification, it as yet remains unclear whether
performing the ESAS on all new patients led to increased PCP interventions or improved
symptom treatment. Additionally the data collection plan of using the patient’s PCP to assess
symptom burden meant that much of the data was collected by different providers. Our findings
may have been different had the data been collected by a single researcher, rather than the 14
physicians who are a part of the MSVD program.
CONCLUSION
Prior studies have shown that palliative care services increase patient satisfaction and wellbeing
and we believe this can be extended into the community. Our study demonstrates that in this
population of chronically ill homebound adults most of whom do not meet hospice criteria,
symptom burden is a serious problem that needs to be addressed alongside their primary and
specialty care needs. Timely symptom burden assessment and aggressive intervention may
prevent unnecessary health care utilization, may improve patients’ quality of life and reduce
caregiver burden. Further study will investigate whether ESAS scores in this population are
predictive of hospitalization and mortality and whether follow-up ESAS assessments serve as a
useful tool to monitor symptom burden over time.
i
Wolff JL, Starfield B, et al. Prevalence, Expenditures, and Complications of Multiple Chronic conditions in the
Elderly. Archives of Internal Medicine. 2002; 162: 2269-2276.
ii
Wu S, Green A. Projection of Chronic Illness Prevalence and Cost Inflation. Santa Monica, CA: RAND Health.
October 2000.
iii
U.S. Census Bureau. (2004). U.S. Interim Projections by Age, Sex, Race, and Hispanic Origin. Retrieved June 10,
2008, from http://www.census.gov/ipc/www/usinterimproj/.
iv
Qiu WQ, Dean M, Liu T, George L, Gann M, Cohen J, Bruce ML. Physical and mental health of homebound older
adults: an overlooked population. J Am Geriatr Soc. 2010 Dec;58(12):2423-8.
v
Kellogg FR, Brickner PW. Long-term home healthcare for the impoverished frail homebound aged: A twentyseven-year experience. J Am Geriatr Soc. 2000;48:1002-11.
vi
Gammel JD. Medical house call program: Extending frail elderly medical care into the home. J Oncol Manag.
2005;14:39-46.
vii
Mor V, Zinn J, Gozalo P, Feng Z, Intrator O, Grabowski DC. Prospects for transferring nursing home residents to
the community. Health Aff (Millwood). 2007;26:1762-71.
viii
Agar M, Currow DC, Shelby-James TM, Plummer J, Sanderson C, Abernethy AP. Preference for place of care
and place of death in palliative care: Are these different questions? Palliative Medicine. 2008;22:787-795.
ix
Townsend J, Frank AO, Fermont D, et al. Terminal cancer care and patients' preference for place of death: A
prospective study. BMJ. 1990;301:415-7.
x
Meier DE, Beresford L. Outpatient clinics are a new frontier for palliative care. J Palliat Med. 2008 Jul;11(6):82328.
xi
Brumley R, Enguidanos S, et al. Increased satisfaction with care and lower costs: results of a randomized trial of
in-home palliative care. J Am Geriatr Soc. 2007. ;55: 993-1000.
xii
Smith KL, Ornstein K, Soriano T, Muller D, Boal J. A multidisciplinary program for delivering primary care to
the underserved urban homebound: looking back, moving forward. J Am Geriatr Soc. 2006;54:1283-1289.
xiii
Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS):
a simple method for the assessment of palliative care patients. J Palliat Care 1991; 7: 6–9.
xiv
Chang VT, Hwang SS, Feuerman M. Validation of the Edmonton Symptom Assessment Scale. Cancer. 2000
May 1;88(9):2164-71.
xv
Selby D, Cascella, A, et al. A single Set of Numerical Cutpoints to Define Moderate and Severe Symptoms for the
Edmonton Symptom Assessment System. Journal of Pain and Symptom Management. 2010; 39(2): 241-249.
xvi
Potter J, Hami F et al. Symptoms in 400 patients referred to palliative care services: prevalence and
patternsPalliat Med. 2003 Jun;17(4):310-4.
xvii
Riechelmann RP, Krzyzanowska MK, et al. .Symptom and medication profiles among cancer patients attending
a palliative care clinic. Support Care Cancer. 2007 Dec;15(12):1407-12.
xviii
Zuvekas SH, Cohen JW, et al. Prescription Drugs and the Changing Concentration of Health Care Expenditures.
Health Affairs. 2007; 26(1):249-57.
xix
Meier DE, Beresford L. Outpatient clinics are a new frontier for palliative care. J Palliat Med. 2008
Jul;11(6):823-28.
Table 1. Characteristics of Study Sample (N=318)
Gender
Female
Male
Ethnicity
White
Latino
Black
Asian
Other
Number (%)
238 (75)
80 (25)
115 (36)
101 (32)
70 (22)
7 (2)
7 (2)
Language
English
Spanish
205 (64)
78 (25)
Other
15 (5)
Unknown
20 (6)
Diagnosis
Dementia
Congestive
Heart
Failure
Chronic
Obstructive
Pulmonary
Disease
Depression
Cancer
Activities of
Daily Living
(0-16)
0-3
4-7
8-11
12-15
16
Missing
Insurance
Medicaid
Non Medicaid
Age
<60
60-69
70-79
80-89
90-99
>100
Living
Situation
Alone
With Family
Member
With Paid
Caregiver
With Family +
Paid Caregiver
Unknown
Number (%)
136 (43)
182 (57)
Independent
Activities of
Daily Living
(0-8)
7-8
5-6
3-4
0-2
Missing
(8=Independent
0 = Totally
dependent)
10 (3)
29 (9)
60 (19)
107 (34)
99 (31)
13 (4)
101 (32)
121 (38)
58 (18)
20 (6)
18 (6)
155 (49)
56 (18)
12 (4)
83 (26)
42 (13)
(0 =
Independent
16 = Totally
dependent)
82 (26)
51 (16)
47 (15)
63 (20)
60 (19)
15 (5)
9 (3)
26 (8)
57 (18)
190 (60)
36 (11)
Table 2. Symptom Burden as measured by the Edmonton Symptom Assessment Scale
(N=318)
Symptom
Percent with Symptom
Mean Score
Pain
47%
5.09
Tiredness
49%
5.79
Nausea
10%
4.27
Depression
33%
5.27
Anxiety
27%
5.32
Drowsiness
37%
5.18
Loss of Appetite
53%
4.77
Feeling of Well-being
48%
5.24
Shortness of breath
27%
4.91
Table 3. Association between symptom score and co-morbidities
Disease
High symptom burden -
High symptom
Percent of patients with
burden - Percent of
disease
patients without
P value
disease
Cancer
8% (24)
5% (18)
0.09
Depression
19% (62)
7% (21)
<0.01
Dementia
15% (49)
33% (106)
<0.01
Congestive heart failure
10% (31)
8% (25)
0.08
Chronic obstructive
7% (21)
4% (12)
0.02
pulmonary disease