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Association Between Symptom Burden and Time to Hospitalization, Nursing Home Placement, and Death Among the Chronically Ill Urban Homebound
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Original Article
Association Between Symptom Burden and Time to Hospitalization, Nursing Home Placement, and Death Among the Chronically Ill Urban Homebound Nancy Yang, BA, Katherine A. Ornstein, PhD, MPH, and Jennifer M. Reckrey, MD Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, New York, USA
Abstract Context. Homebound adults experience significant symptom burden. Objectives. To examine demographic and clinical characteristics associated with high symptom burden in the homebound, and to examine associations between symptom burden and time to hospitalization, nursing home placement, and death. Methods. Three hundred eighteen patients newly enrolled in the Mount Sinai Visiting Doctors Program, an urban homebased primary care program, were studied. Patient sociodemographic characteristics, symptom burden (measured via the Edmonton Symptom Assessment Scale), and incidents of hospitalization, nursing home placement, and death were collected via medical chart review. Multivariate Cox proportional hazards models were used to analyze the effect of high symptom burden on time to first hospitalization, nursing home placement, and death. Results. Of the study sample, 45% had severe symptom burden (i.e., Edmonton Symptom Assessment Scale score >6 on at least one symptom). Patients with severe symptom burden were younger (82.0 vs. 85.5 years, P < 0.01), had more comorbid conditions (3.2 vs. 2.5 Charlson score, P < 0.01), higher prevalence of depression (43.4% vs. 12.0%, P < 0.01), lower prevalence of dementia (34.3% vs. 60.6%, P < 0.01), and used fewer hours of home health services (73.6 vs. 94.4 hours/wk, P < 0.01). Severe symptom burden was associated with a shorter time to first hospitalization (hazard ratio ¼ 1.51, 95% CI 1.06e2.15) in adjusted models but had no association with time to nursing home placement or death. Conclusion. The homebound with severe symptom burden represents a unique cohort of patients who are at increased risk of hospitalization. Tailored symptom management via home-based primary and palliative care programs may prevent unnecessary health care utilization in this population. J Pain Symptom Manage 2016;-:-e-. Ó 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved. Key Words Homebound, symptom burden, home-based primary care, elderly, multimorbidity
Introduction There is growing recognition of the prevalence of symptoms associated with chronic diseases in the elderly. Common conditions such as dementia, congestive heart failure, chronic obstructive pulmonary disease, and cancers are often accompanied by substantial symptom burden, including symptoms
Address correspondence to: Nancy Yang, BA, One Gustave L. Levy Place, Box 1253, New York, NY 10029, USA. E-mail: [email protected] Accepted for publication: February 13, 2016. Ó 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
such as depression, nausea, shortness of breath, fatigue, and pain.1e5 Currently an estimated two out of every three older adults live with multiple chronic medical conditions and as the U.S. population ages and the number of chronically ill older adults with multimorbidity increases, the burden of resulting symptoms will continue to rise.3,6,7 High symptom burden, independent of associated underlying diseases, has been linked to poorer quality of life, increased mental and physical disability, greater use of health care services, and increased risk for morbidity and mortality.2,8e13 The estimated 2 million elderly homebound living in the U.S. have a disproportionate chronic disease 0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2016.01.006
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burden.14 The homebound adults often have complex and interrelated medical and social comorbidities that contribute both to substantial functional and cognitive limitations, greater use of health care services, and higher mortality rates compared with the nonhomebound elderly population.11,14e19 Unfortunately, the homebound have also historically lacked adequate primary medical care because of disabilities limiting access to routine care, lower income, or inability to find appropriately trained and experienced providers to manage their complex health care needs.14,20e24 A growing body of literature suggests that this homebound population suffers from substantial symptom burden related to their chronic conditions.11,20,25,26 In a recent study of a nationally representative sample of Medicare beneficiaries, the homebound reported more than twice as many symptoms as their nonhomebound counterparts.25 Although symptom burden has been documented as an independent predictor of hospitalization,2,12 nursing home placement,13 and mortality2 in community-dwelling older adults, the impact of symptom burden on these health care outcomes in the homebound has not been studied. As the number of elderly individuals in the U.S. continues to grow, the homebound population will grow as well.27 A better understanding of symptom burden and its consequences in the homebound population is essential to improve patient quality of life, improve health care service delivery, and decrease unnecessary health care utilization among the homebound. Therefore, we 1) examined characteristics associated with high symptom burden in the chronically ill homebound and 2) examined associations between high symptom burden and time to hospitalizations, nursing home placement, and death.
Methods Setting Mount Sinai Visiting Doctors (MSVD) is the largest academic home-based primary care program in the U.S. Described elsewhere in detail,28,29 the MSVD team of physicians, social workers, nurse practitioners, and nurses collaborate with community nursing agencies to provide multidisciplinary primary care to more than 1000 homebound individuals in Manhattan annually.30,31 Any patient older than 18 years living in Manhattan who meets the Medicare homebound definition (able to leave home only with great difficulty and for absences that are infrequent or of short duration) is eligible to enroll in MSVD. In addition to routine and urgent home visits, the MSVD team provides extensive telephonic support and disease management between visits.30,31 High priority is placed on
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quality of life, comfort, and minimizing unnecessary emergency department visits and hospitalizations.28
Study Sample This observational cohort study included all patients newly enrolled in the MSVD program between September 2008 and February 2010. Patients were followed over time from enrollment in the MSVD program until discharge from the program (e.g., because of death, nursing home placement, changed providers) or until the censoring date of July 5, 2014. The study was approved by the Mount Sinai Institutional Review Board.
Measures Baseline characteristics for all patients were collected by the primary care physician as a routine part of the comprehensive initial home visit for all newly enrolled patients, as described in Wajnberg 2013. Measures included 1) sociodemographic variables such as age, gender, race, insurance type, primary language, and living situation, 2) functional status as measured by ability to perform activities of daily living (ADLs: physical ambulation, feeding, dressing, grooming, bathing, toileting, and incontinence) and instrumental activities of daily living (IADLs: telephone use, shopping, food preparation, housekeeping, house repairs, laundry, transportation, taking medicine, and financial management),32 3) home health and nursing service utilization, 4) comorbidity as measured using the Charlson Comorbidity Index (CCI),33 and 5) symptom burden as measured by the Edmonton Symptom Assessment System (ESAS).34 The ESAS consists of visual analog scales scored from 0 (indicating no symptoms) to 10 (the worst possible symptom severity) for 10 symptoms, including pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being, and shortness of breath, and other (to be filled out by the provider).34 The ESAS was selected as it is a standardized, simple (with only 10 visual analog scales), and short (requiring approximately 5 minutes to complete) symptom assessment tool that has been validated for both patient and caregiver report in a number of care settings, including those with older people with multimorbidities34e37; whether assistance was required to complete the ESAS was noted. Based on previous research, patients were categorized as having a severe symptom burden if they had a score greater than 6 on any one or more ESAS symptoms.38 Study outcomes included incidence and timing of 1) hospitalizations and 30-day readmissions at Mount Sinai Hospital, 2) nursing home placement, and 3) death. Location of death also was determined. Baseline characteristics and study outcomes were
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abstracted via review of patients’ electronic medical records.
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A P-value <0.05 was considered statistically significant, and all analyses were conducted using SAS, version 9.3 (SAS Institute, Inc., Cary, NC).
Statistical Analyses Study variables were descriptively characterized, with means and SDs reported for continuous variables and frequency and percentages reported for categorical variables. Severe and nonsevere symptom burden patients were compared with respect to baseline measures using the Pearson chi-square test or independent sample t-tests. Outcomes related to hospitalization, nursing home placement, and death were descriptively characterized, and incidence and rates of hospitalization were calculated. Severe and nonsevere symptom burden patients’ hospitalization, nursing home, and death rates were compared using Pearson chi-square test or independent sample t-tests. Given symptom burden was assessed at patient admission to the MSVD program and length of follow-up was highly variable (range ¼ 0 to 68 months), we used adjusted Cox proportional hazards models with 95% CIs to investigate the association between severe symptom burden and time to 1) hospitalization, 2) nursing home placement, and 3) death. By accounting for differential follow-up times by modeling time to event rather than any event occurrence, the Cox proportional hazards regression provides a more clinically relevant estimate of risk. Unadjusted Kaplan-Meier survival curves were plotted to model the relationship between symptom burden and time to hospitalization, nursing home placement, and death.
Results A total of 318 homebound patients were followed for up to six years after enrollment, with an average follow-up time of 2.2 years. The typical MSVD patient was elderly, female, nonwhite, English speaking, had significant functional impairment, multiple chronic diseases, and received home health and nursing services (Table 1). Forty-five percent of the study sample was classified as having severe symptom burden. The most severe symptoms reported were tiredness (average ESAS score of 5.8 out of 10, 49% reported), lack of wellbeing (5.3, 47%), anxiety (5.3, 27%), and depression (5.3, 33%). Patients classified as having severe symptom burden had a statistically significant (P < 0.01) higher prevalence and higher average ESAS scores for all symptoms except for anxiety. Patients with and without severe symptom burden varied on a number of key characteristics at baseline (Table 1). Compared with nonsevere symptom burden patients, patients with severe symptom burden were younger (82.0 vs. 85.5 years, P < 0.01), more independent in IADLs (36% vs. 48% with IADL scores of 0 or 1, P < 0.05), and used fewer hours of home health services per week (73.6 vs. 94.4 hours, P < 0.01). Patients with severe symptom burden also had more comorbid
Table 1 Characteristics of Study Sample Based on Severe Symptom Statusa (n ¼ 318) Characteristic
All Patients
Severe Symptoms
Nonsevere Symptoms
Sample size, n (%) Sociodemographics Age (mean SD)b Female Nonwhite Medicaid Lives alone Lives with 24 hours paid caregiver Functional status ADL dependent IADL dependentb Health services at baseline Home health services (HHS) Average HHS hours/weekb Nursing services Diagnoses Charlson Comorbidity Indexb Dementiab Diabetesb Depressionb Chronic heart failure Cancer Self-completed ESASb
318 (100.0)
143 (45.0)
175 (55.0)
83.9 12.1 238 (74.8) 186 (58.5) 136 (42.8) 102 (32.1) 58 (18.2)
82.0 113 84 59 52 20
11.8 (79.0) (58.7) (41.3) (36.4) (14.0)
85.5 125 102 77 50 38
12.1 (71.4) (58.3) (44.0) (28.6) (21.7)
53 (16.7) 136 (42.8)
27 (18.9) 52 (36.4)
26 (14.9) 84 (48.0)
270 (84.9) 84.9 67.7 172 (54.1)
122 (85.3) 73.6 64.4 79 (55.2)
148 (84.6) 94.4 69.1 93 (53.1)
2.8 2.1 155 (48.7) 106 (33.3) 83 (26.1) 56 (17.6) 42 (13.2) 172 (54.1)
3.2 49 62 62 31 24 87
2.3 (34.3) (43.4) (43.4) (21.7) (16.8) (60.8)
ADL ¼ activity of daily living; IADL ¼ instrumental activity of daily living; ESAS ¼ Edmonton Symptom Assessment Scale. a Severe symptom status defined as a score greater than 6 on any one or more ESAS symptoms. b P < 0.05 based on chi square for categorical variables and t-tests for continuous variables.
2.5 106 44 21 25 18 85
1.9 (60.6) (25.1) (12.0) (14.3) (10.3) (48.6)
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conditions (3.2 vs. 2.5 CCI score, P < 0.01), with a higher prevalence of depression (43% vs. 12%, P < 0.01) and diabetes (43% vs. 25%, P < 0.01) and a lower prevalence of dementia (34% vs. 61%, P < 0.01). Patients with severe symptom burden were more likely to selfcomplete the ESAS (61% vs. 49%, P ¼ 0.03). A total of 161 patients (50.6%) were hospitalized at least once during the study, with an average rate of 1.2 hospitalizations per year (Table 2). There were no significant differences in number, rate, or average time to hospitalizations between symptom burden groups. Of the patients who were hospitalized, 39 (24%) were readmitted to the hospital at least once within 30 days. A significantly lower percentage of patients with severe symptom burden were readmitted within 30 days of a hospitalization (18% vs. 31%, P < 0.05). Approximately one-eighth (12.6%) of all patients were placed in a nursing home, and over half (57.2%) died during the study period. Of patients who died, 65% died at home. There were no significant differences between symptom burden groups in nursing home placement and death. Results from the unadjusted Cox regression model showed an increased risk for time to first hospitalization for patients with severe symptom burden (hazard ratio ¼ 1.75, 95% CI ¼ 1.28e2.40), as also evidenced by the Kaplan-Meier curves in Fig. 1. After controlling for age, depression, disease burden (CCI >5), and self-completion of the ESAS, severe symptom burden patients were still 50% more likely to be hospitalized compared with nonsevere symptom burden patients (hazard ratio ¼ 1.51, 95% CI ¼ 1.06e2.15; Table 3). Severe symptom burden was not a significant predictor of time to nursing home placement or death.
Discussion In this study, homebound patients with severe symptom burden tended to be younger with more
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comorbid conditions and less dementia, IADL impairment, and utilization of home health services. Among this homebound elderly patient population, severe symptom burden was an independent predictor of time to first hospitalization. These findings confirm that in our homebound population, multimorbidity was associated with severe symptoms. Although dementia is a common reason for referral to MSVD, those with dementia were less likely to have severe symptom burden. Those with dementia were also less likely to self-report symptoms on the ESAS as compared with patients without dementia (37% vs. 78%), and it is possible that caregivers underreported the symptoms that dementia patients suffered from. However, the ESAS has been validated for caregiver responses for symptom burden assessment, and prior studies also suggest that informal primary caregivers tend to overestimate symptom intensity.34,36,37,39e44 Thus, rather than underreporting, we believe these findings reflect that those with dementia had less chronic diseases and, therefore, less severe symptom burden; we believe that multimorbidity drives severe symptom burden in our population. It is also notable that patients with severe symptom burden used on average 20 fewer hours of home health services per week as compared with those without severe symptom burden. These observed differences may be due to the fact that patients with severe symptom burden had less dementia and less IADL impairment and therefore had less need for home health services. However, given there was significant ADL impairment in both patients with and without severe symptom burden, these differences could also be due to unmet health care needs with symptomatic patients underutilizing needed home health services. Further study is needed to explore how home health care services impact patient symptom burden.
Table 2 Hospitalizations, Nursing Home Placement, and Death by Symptom Burden Outcome Average follow-up time (yrs)a Hospitalizations and readmissions Any hospitalization, n (%) Number of hospitalizations, mean SD (range) Average annual rate of hospitalization, mean SD Average time to first hospitalization (yrs) Any 30-day readmission, n (%)a Nursing home Nursing home placement Death Died during study period If died, patient died at home a
P < 0.05.
All Patients (n ¼ 318)
Severe Symptom (n ¼ 143)
Nonsevere Symptom (n ¼ 175)
2.2 1.8
1.9 1.8
2.4 1.8
161 (50.6) 1.2 1.7 (0e10) 1.2 2.7 1.1 1.2 39 (24.2)
80 (55.9) 1.3 1.7 (0e9) 1.4 3.1 1.1 1.2 14 (17.5)
81 (46.3) 1.1 1.8 (0e10) 1.1 2.4 1.1 1.3 25 (30.9)
40 (12.6)
16 (11.2)
24 (13.7)
182 (57.2) 119 (65.4)
85 (59.4) 57 (67.1)
97 (55.4) 62 (63.9)
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Fig. 1. Kaplan-Meier estimates of time to hospitalization by symptom burden, unadjusted.
Like previous studies of community dwelling elders in general,2,12 we found that severe symptom burden was associated with shorter time to first hospitalization in the homebound. Time to first hospitalization best demonstrates the impact of severe symptom burden on hospitalization in this study because of varying periods of patient follow-up. The association between symptom burden and hospitalization may be in part due to the fact that those with severe symptom burden rely more on hospitals for acute symptom management and care, resulting in earlier and more frequent hospitalizations. For these patients, their symptom burden rather than the presence or absence of chronic disease itself may be driving their utilization. This demonstrates an opportunity for clinical intervention; for example, while a clinician is unlikely to reverse a patient’s severe osteoarthritis, adequate treatment of pain may not only improve the patient’s quality of life but also decrease his/her risk of hospitalization. In addition, it suggests the need for development and incorporation of symptom management protocols into the care of this patient population. Further studies should explore how the use of validated symptom assessment instruments to monitor symptom burden can not only guide symptom management but also impact hospitalization rates. Unlike previous studies, in our population, severe symptom burden did not predict nursing home placement or death as it had in community-dwelling elders.2,13 This may be because many patients enter the MSVD program specifically to avoid nursing
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home placement, and this contributes to a low nursing home placement rate overall. Future nursing home placements may have also been missed given the average follow-up time of only 2.2 years. Similarly, a high baseline mortality rate at MSVD may have limited the potential predictive value of symptom burden severity. It is also important to note that the studies conducted in community dwelling elders used a composite score to measure symptom burden.2,12,13 We chose to define symptom burden as a score of greater than 6 in one or more symptoms on the ESAS as this definition was more clinically relevant in our practice; severe symptoms in any category not only identifies a discreet cause of patient suffering but also provides a potential opportunity to intervene. Symptom burden for pain, anxiety, depression, and tiredness in homebound patients has been successfully managed and decreased with home-based primary care (HBPC) programs.45 Fortunately, the number of HBPC programs that are able to provide comprehensive treatment of chronic conditions and symptoms for the homebound is growing.23,26,29,46 These programs have already been shown to improve the health of the homebound population while decreasing health care spending.47e52 With 45% of patients in the current cohort reporting severe symptom burden, the need for the incorporation of palliative care into HBPC programs is evident. Many models of HBPC are emphasizing the importance of palliative approaches for people with complex chronic illnesses. Evidence in nonhomebound elders suggests that for older primary care patients, interventions such as inhome palliative care programs and ‘‘symptom treatment’’ protocols can lead to significant symptom improvement, higher satisfaction with services, and reductions in health care utilization.23,48,53e56 Further studies should specifically assess if effective symptom management has a similar impact in the homebound. Our study had several limitations. First, symptom burden data were only available for a single time point, and our analysis, therefore, could not capture the dynamic changes in symptom burden that may occur for patients over time. Second, we used a definition of severe symptom burden that included 45% of the study sample and did not differentiate between
Table 3 Cox Proportional Hazards Model: Severe Symptom Burden as a Predictor of Hospitalization, Nursing Home Placement, and Death Adjusted Modela
Unadjusted Model Outcome Time to first hospitalization Time to nursing home placement Time to death
95% CI
Hazards Ratio
95% CI
1.75b 1.04 1.31
1.28e2.40 0.55e1.95 0.98e1.75
1.51b 0.70 1.32
1.06e2.15 0.33e1.49 0.95e1.83
Model adjusted for age, depression, disease burden (Charlson Comorbidity Index >5), and self-completion of the Edmonton Symptom Assessment Scale. P < 0.05.
a b
Hazards Ratio
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specific symptoms. Although we believe our definition of symptom burden reflects clinically useful indices of disease and health needs, we recognize that other definitions have been and could be used with potentially differing results. Third, we limited our chart review to hospitalizations at the Mount Sinai Hospital System, potentially underestimating the number of hospitalizations in this patient cohort. And finally, we studied a sample of elderly homebound patients enrolled in an urban home-based primary and palliative care program; the results from this study may not be generalizable to the broader homebound patient population or to homebound elderly enrolled in other in-home care programs.
Conclusion Despite these limitations, our research characterizes homebound elders with multiple medical conditions who are most likely to have severe symptom burden. This study also describes a positive association between severe symptoms and time to hospitalization in the elderly homebound population. Because of their multiple chronic medical issues, the symptomatic homebound need a more holistic approach to care that HBPC and palliative care programs are uniquely positioned to provide. As this patient population grows, the need for innovative models of in-home symptom burden management will increase. We propose that symptom burden severity, irrespective of the specific symptom or underlying chronic disease, may be an important way to guide symptom management and treatment strategies with the potential benefit of reducing unnecessary hospitalizations.
Disclosures and Acknowledgments Nancy Yang received funding from the Mount Sinai Patricia S. Levinson Summer Fellowship for Community Oriented Research and Service and support from the Medical Student Training in Aging Research program to complete this research. Dr. Ornstein was supported by National Institute on Aging K01AG047923 and the National Palliative Care Research Center. The authors declare no potential personal or financial conflicts of interest. The authors acknowledge the Mount Sinai Visiting Doctors Program for their support.
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53. Klapow JC, Schmidt SM, Taylor LA, et al. Symptom management in older primary care patients: feasibility of an experimental, written self-disclosure protocol. Ann Intern Med 2001;134:905e911.
55. Lukas L, Foltz C, Paxton H. Hospital outcomes for a home-based palliative medicine consulting service. J Palliat Med 2013;16:179e184.
54. Mayo-Wilson E, Grant S, Burton J, et al. Preventive home visits for mortality, morbidity, and institutionalization in older adults: a systematic review and meta-analysis. PLoS One 2014;9:e89257.
56. Rabow MW, Dibble SL, Pantilat SZ, McPhee SJ. The comprehensive care team: a controlled trial of outpatient palliative medicine consultation. Arch Intern Med 2004; 164:83e91.
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Journal of Pain and Symptom Management
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Original Article
Association Between Symptom Burden and Time to Hospitalization, Nursing Home Placement, and Death Among the Chronically Ill Urban Homebound Nancy Yang, BA, Katherine A. Ornstein, PhD, MPH, and Jennifer M. Reckrey, MD Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, New York, USA
Abstract Context. Homebound adults experience significant symptom burden. Objectives. To examine demographic and clinical characteristics associated with high symptom burden in the homebound, and to examine associations between symptom burden and time to hospitalization, nursing home placement, and death. Methods. Three hundred eighteen patients newly enrolled in the Mount Sinai Visiting Doctors Program, an urban homebased primary care program, were studied. Patient sociodemographic characteristics, symptom burden (measured via the Edmonton Symptom Assessment Scale), and incidents of hospitalization, nursing home placement, and death were collected via medical chart review. Multivariate Cox proportional hazards models were used to analyze the effect of high symptom burden on time to first hospitalization, nursing home placement, and death. Results. Of the study sample, 45% had severe symptom burden (i.e., Edmonton Symptom Assessment Scale score >6 on at least one symptom). Patients with severe symptom burden were younger (82.0 vs. 85.5 years, P < 0.01), had more comorbid conditions (3.2 vs. 2.5 Charlson score, P < 0.01), higher prevalence of depression (43.4% vs. 12.0%, P < 0.01), lower prevalence of dementia (34.3% vs. 60.6%, P < 0.01), and used fewer hours of home health services (73.6 vs. 94.4 hours/wk, P < 0.01). Severe symptom burden was associated with a shorter time to first hospitalization (hazard ratio ¼ 1.51, 95% CI 1.06e2.15) in adjusted models but had no association with time to nursing home placement or death. Conclusion. The homebound with severe symptom burden represents a unique cohort of patients who are at increased risk of hospitalization. Tailored symptom management via home-based primary and palliative care programs may prevent unnecessary health care utilization in this population. J Pain Symptom Manage 2016;-:-e-. Ó 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved. Key Words Homebound, symptom burden, home-based primary care, elderly, multimorbidity
Introduction There is growing recognition of the prevalence of symptoms associated with chronic diseases in the elderly. Common conditions such as dementia, congestive heart failure, chronic obstructive pulmonary disease, and cancers are often accompanied by substantial symptom burden, including symptoms
Address correspondence to: Nancy Yang, BA, One Gustave L. Levy Place, Box 1253, New York, NY 10029, USA. E-mail: [email protected] Accepted for publication: February 13, 2016. Ó 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
such as depression, nausea, shortness of breath, fatigue, and pain.1e5 Currently an estimated two out of every three older adults live with multiple chronic medical conditions and as the U.S. population ages and the number of chronically ill older adults with multimorbidity increases, the burden of resulting symptoms will continue to rise.3,6,7 High symptom burden, independent of associated underlying diseases, has been linked to poorer quality of life, increased mental and physical disability, greater use of health care services, and increased risk for morbidity and mortality.2,8e13 The estimated 2 million elderly homebound living in the U.S. have a disproportionate chronic disease 0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2016.01.006
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burden.14 The homebound adults often have complex and interrelated medical and social comorbidities that contribute both to substantial functional and cognitive limitations, greater use of health care services, and higher mortality rates compared with the nonhomebound elderly population.11,14e19 Unfortunately, the homebound have also historically lacked adequate primary medical care because of disabilities limiting access to routine care, lower income, or inability to find appropriately trained and experienced providers to manage their complex health care needs.14,20e24 A growing body of literature suggests that this homebound population suffers from substantial symptom burden related to their chronic conditions.11,20,25,26 In a recent study of a nationally representative sample of Medicare beneficiaries, the homebound reported more than twice as many symptoms as their nonhomebound counterparts.25 Although symptom burden has been documented as an independent predictor of hospitalization,2,12 nursing home placement,13 and mortality2 in community-dwelling older adults, the impact of symptom burden on these health care outcomes in the homebound has not been studied. As the number of elderly individuals in the U.S. continues to grow, the homebound population will grow as well.27 A better understanding of symptom burden and its consequences in the homebound population is essential to improve patient quality of life, improve health care service delivery, and decrease unnecessary health care utilization among the homebound. Therefore, we 1) examined characteristics associated with high symptom burden in the chronically ill homebound and 2) examined associations between high symptom burden and time to hospitalizations, nursing home placement, and death.
Methods Setting Mount Sinai Visiting Doctors (MSVD) is the largest academic home-based primary care program in the U.S. Described elsewhere in detail,28,29 the MSVD team of physicians, social workers, nurse practitioners, and nurses collaborate with community nursing agencies to provide multidisciplinary primary care to more than 1000 homebound individuals in Manhattan annually.30,31 Any patient older than 18 years living in Manhattan who meets the Medicare homebound definition (able to leave home only with great difficulty and for absences that are infrequent or of short duration) is eligible to enroll in MSVD. In addition to routine and urgent home visits, the MSVD team provides extensive telephonic support and disease management between visits.30,31 High priority is placed on
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quality of life, comfort, and minimizing unnecessary emergency department visits and hospitalizations.28
Study Sample This observational cohort study included all patients newly enrolled in the MSVD program between September 2008 and February 2010. Patients were followed over time from enrollment in the MSVD program until discharge from the program (e.g., because of death, nursing home placement, changed providers) or until the censoring date of July 5, 2014. The study was approved by the Mount Sinai Institutional Review Board.
Measures Baseline characteristics for all patients were collected by the primary care physician as a routine part of the comprehensive initial home visit for all newly enrolled patients, as described in Wajnberg 2013. Measures included 1) sociodemographic variables such as age, gender, race, insurance type, primary language, and living situation, 2) functional status as measured by ability to perform activities of daily living (ADLs: physical ambulation, feeding, dressing, grooming, bathing, toileting, and incontinence) and instrumental activities of daily living (IADLs: telephone use, shopping, food preparation, housekeeping, house repairs, laundry, transportation, taking medicine, and financial management),32 3) home health and nursing service utilization, 4) comorbidity as measured using the Charlson Comorbidity Index (CCI),33 and 5) symptom burden as measured by the Edmonton Symptom Assessment System (ESAS).34 The ESAS consists of visual analog scales scored from 0 (indicating no symptoms) to 10 (the worst possible symptom severity) for 10 symptoms, including pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being, and shortness of breath, and other (to be filled out by the provider).34 The ESAS was selected as it is a standardized, simple (with only 10 visual analog scales), and short (requiring approximately 5 minutes to complete) symptom assessment tool that has been validated for both patient and caregiver report in a number of care settings, including those with older people with multimorbidities34e37; whether assistance was required to complete the ESAS was noted. Based on previous research, patients were categorized as having a severe symptom burden if they had a score greater than 6 on any one or more ESAS symptoms.38 Study outcomes included incidence and timing of 1) hospitalizations and 30-day readmissions at Mount Sinai Hospital, 2) nursing home placement, and 3) death. Location of death also was determined. Baseline characteristics and study outcomes were
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abstracted via review of patients’ electronic medical records.
3
A P-value <0.05 was considered statistically significant, and all analyses were conducted using SAS, version 9.3 (SAS Institute, Inc., Cary, NC).
Statistical Analyses Study variables were descriptively characterized, with means and SDs reported for continuous variables and frequency and percentages reported for categorical variables. Severe and nonsevere symptom burden patients were compared with respect to baseline measures using the Pearson chi-square test or independent sample t-tests. Outcomes related to hospitalization, nursing home placement, and death were descriptively characterized, and incidence and rates of hospitalization were calculated. Severe and nonsevere symptom burden patients’ hospitalization, nursing home, and death rates were compared using Pearson chi-square test or independent sample t-tests. Given symptom burden was assessed at patient admission to the MSVD program and length of follow-up was highly variable (range ¼ 0 to 68 months), we used adjusted Cox proportional hazards models with 95% CIs to investigate the association between severe symptom burden and time to 1) hospitalization, 2) nursing home placement, and 3) death. By accounting for differential follow-up times by modeling time to event rather than any event occurrence, the Cox proportional hazards regression provides a more clinically relevant estimate of risk. Unadjusted Kaplan-Meier survival curves were plotted to model the relationship between symptom burden and time to hospitalization, nursing home placement, and death.
Results A total of 318 homebound patients were followed for up to six years after enrollment, with an average follow-up time of 2.2 years. The typical MSVD patient was elderly, female, nonwhite, English speaking, had significant functional impairment, multiple chronic diseases, and received home health and nursing services (Table 1). Forty-five percent of the study sample was classified as having severe symptom burden. The most severe symptoms reported were tiredness (average ESAS score of 5.8 out of 10, 49% reported), lack of wellbeing (5.3, 47%), anxiety (5.3, 27%), and depression (5.3, 33%). Patients classified as having severe symptom burden had a statistically significant (P < 0.01) higher prevalence and higher average ESAS scores for all symptoms except for anxiety. Patients with and without severe symptom burden varied on a number of key characteristics at baseline (Table 1). Compared with nonsevere symptom burden patients, patients with severe symptom burden were younger (82.0 vs. 85.5 years, P < 0.01), more independent in IADLs (36% vs. 48% with IADL scores of 0 or 1, P < 0.05), and used fewer hours of home health services per week (73.6 vs. 94.4 hours, P < 0.01). Patients with severe symptom burden also had more comorbid
Table 1 Characteristics of Study Sample Based on Severe Symptom Statusa (n ¼ 318) Characteristic
All Patients
Severe Symptoms
Nonsevere Symptoms
Sample size, n (%) Sociodemographics Age (mean SD)b Female Nonwhite Medicaid Lives alone Lives with 24 hours paid caregiver Functional status ADL dependent IADL dependentb Health services at baseline Home health services (HHS) Average HHS hours/weekb Nursing services Diagnoses Charlson Comorbidity Indexb Dementiab Diabetesb Depressionb Chronic heart failure Cancer Self-completed ESASb
318 (100.0)
143 (45.0)
175 (55.0)
83.9 12.1 238 (74.8) 186 (58.5) 136 (42.8) 102 (32.1) 58 (18.2)
82.0 113 84 59 52 20
11.8 (79.0) (58.7) (41.3) (36.4) (14.0)
85.5 125 102 77 50 38
12.1 (71.4) (58.3) (44.0) (28.6) (21.7)
53 (16.7) 136 (42.8)
27 (18.9) 52 (36.4)
26 (14.9) 84 (48.0)
270 (84.9) 84.9 67.7 172 (54.1)
122 (85.3) 73.6 64.4 79 (55.2)
148 (84.6) 94.4 69.1 93 (53.1)
2.8 2.1 155 (48.7) 106 (33.3) 83 (26.1) 56 (17.6) 42 (13.2) 172 (54.1)
3.2 49 62 62 31 24 87
2.3 (34.3) (43.4) (43.4) (21.7) (16.8) (60.8)
ADL ¼ activity of daily living; IADL ¼ instrumental activity of daily living; ESAS ¼ Edmonton Symptom Assessment Scale. a Severe symptom status defined as a score greater than 6 on any one or more ESAS symptoms. b P < 0.05 based on chi square for categorical variables and t-tests for continuous variables.
2.5 106 44 21 25 18 85
1.9 (60.6) (25.1) (12.0) (14.3) (10.3) (48.6)
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conditions (3.2 vs. 2.5 CCI score, P < 0.01), with a higher prevalence of depression (43% vs. 12%, P < 0.01) and diabetes (43% vs. 25%, P < 0.01) and a lower prevalence of dementia (34% vs. 61%, P < 0.01). Patients with severe symptom burden were more likely to selfcomplete the ESAS (61% vs. 49%, P ¼ 0.03). A total of 161 patients (50.6%) were hospitalized at least once during the study, with an average rate of 1.2 hospitalizations per year (Table 2). There were no significant differences in number, rate, or average time to hospitalizations between symptom burden groups. Of the patients who were hospitalized, 39 (24%) were readmitted to the hospital at least once within 30 days. A significantly lower percentage of patients with severe symptom burden were readmitted within 30 days of a hospitalization (18% vs. 31%, P < 0.05). Approximately one-eighth (12.6%) of all patients were placed in a nursing home, and over half (57.2%) died during the study period. Of patients who died, 65% died at home. There were no significant differences between symptom burden groups in nursing home placement and death. Results from the unadjusted Cox regression model showed an increased risk for time to first hospitalization for patients with severe symptom burden (hazard ratio ¼ 1.75, 95% CI ¼ 1.28e2.40), as also evidenced by the Kaplan-Meier curves in Fig. 1. After controlling for age, depression, disease burden (CCI >5), and self-completion of the ESAS, severe symptom burden patients were still 50% more likely to be hospitalized compared with nonsevere symptom burden patients (hazard ratio ¼ 1.51, 95% CI ¼ 1.06e2.15; Table 3). Severe symptom burden was not a significant predictor of time to nursing home placement or death.
Discussion In this study, homebound patients with severe symptom burden tended to be younger with more
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comorbid conditions and less dementia, IADL impairment, and utilization of home health services. Among this homebound elderly patient population, severe symptom burden was an independent predictor of time to first hospitalization. These findings confirm that in our homebound population, multimorbidity was associated with severe symptoms. Although dementia is a common reason for referral to MSVD, those with dementia were less likely to have severe symptom burden. Those with dementia were also less likely to self-report symptoms on the ESAS as compared with patients without dementia (37% vs. 78%), and it is possible that caregivers underreported the symptoms that dementia patients suffered from. However, the ESAS has been validated for caregiver responses for symptom burden assessment, and prior studies also suggest that informal primary caregivers tend to overestimate symptom intensity.34,36,37,39e44 Thus, rather than underreporting, we believe these findings reflect that those with dementia had less chronic diseases and, therefore, less severe symptom burden; we believe that multimorbidity drives severe symptom burden in our population. It is also notable that patients with severe symptom burden used on average 20 fewer hours of home health services per week as compared with those without severe symptom burden. These observed differences may be due to the fact that patients with severe symptom burden had less dementia and less IADL impairment and therefore had less need for home health services. However, given there was significant ADL impairment in both patients with and without severe symptom burden, these differences could also be due to unmet health care needs with symptomatic patients underutilizing needed home health services. Further study is needed to explore how home health care services impact patient symptom burden.
Table 2 Hospitalizations, Nursing Home Placement, and Death by Symptom Burden Outcome Average follow-up time (yrs)a Hospitalizations and readmissions Any hospitalization, n (%) Number of hospitalizations, mean SD (range) Average annual rate of hospitalization, mean SD Average time to first hospitalization (yrs) Any 30-day readmission, n (%)a Nursing home Nursing home placement Death Died during study period If died, patient died at home a
P < 0.05.
All Patients (n ¼ 318)
Severe Symptom (n ¼ 143)
Nonsevere Symptom (n ¼ 175)
2.2 1.8
1.9 1.8
2.4 1.8
161 (50.6) 1.2 1.7 (0e10) 1.2 2.7 1.1 1.2 39 (24.2)
80 (55.9) 1.3 1.7 (0e9) 1.4 3.1 1.1 1.2 14 (17.5)
81 (46.3) 1.1 1.8 (0e10) 1.1 2.4 1.1 1.3 25 (30.9)
40 (12.6)
16 (11.2)
24 (13.7)
182 (57.2) 119 (65.4)
85 (59.4) 57 (67.1)
97 (55.4) 62 (63.9)
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Fig. 1. Kaplan-Meier estimates of time to hospitalization by symptom burden, unadjusted.
Like previous studies of community dwelling elders in general,2,12 we found that severe symptom burden was associated with shorter time to first hospitalization in the homebound. Time to first hospitalization best demonstrates the impact of severe symptom burden on hospitalization in this study because of varying periods of patient follow-up. The association between symptom burden and hospitalization may be in part due to the fact that those with severe symptom burden rely more on hospitals for acute symptom management and care, resulting in earlier and more frequent hospitalizations. For these patients, their symptom burden rather than the presence or absence of chronic disease itself may be driving their utilization. This demonstrates an opportunity for clinical intervention; for example, while a clinician is unlikely to reverse a patient’s severe osteoarthritis, adequate treatment of pain may not only improve the patient’s quality of life but also decrease his/her risk of hospitalization. In addition, it suggests the need for development and incorporation of symptom management protocols into the care of this patient population. Further studies should explore how the use of validated symptom assessment instruments to monitor symptom burden can not only guide symptom management but also impact hospitalization rates. Unlike previous studies, in our population, severe symptom burden did not predict nursing home placement or death as it had in community-dwelling elders.2,13 This may be because many patients enter the MSVD program specifically to avoid nursing
5
home placement, and this contributes to a low nursing home placement rate overall. Future nursing home placements may have also been missed given the average follow-up time of only 2.2 years. Similarly, a high baseline mortality rate at MSVD may have limited the potential predictive value of symptom burden severity. It is also important to note that the studies conducted in community dwelling elders used a composite score to measure symptom burden.2,12,13 We chose to define symptom burden as a score of greater than 6 in one or more symptoms on the ESAS as this definition was more clinically relevant in our practice; severe symptoms in any category not only identifies a discreet cause of patient suffering but also provides a potential opportunity to intervene. Symptom burden for pain, anxiety, depression, and tiredness in homebound patients has been successfully managed and decreased with home-based primary care (HBPC) programs.45 Fortunately, the number of HBPC programs that are able to provide comprehensive treatment of chronic conditions and symptoms for the homebound is growing.23,26,29,46 These programs have already been shown to improve the health of the homebound population while decreasing health care spending.47e52 With 45% of patients in the current cohort reporting severe symptom burden, the need for the incorporation of palliative care into HBPC programs is evident. Many models of HBPC are emphasizing the importance of palliative approaches for people with complex chronic illnesses. Evidence in nonhomebound elders suggests that for older primary care patients, interventions such as inhome palliative care programs and ‘‘symptom treatment’’ protocols can lead to significant symptom improvement, higher satisfaction with services, and reductions in health care utilization.23,48,53e56 Further studies should specifically assess if effective symptom management has a similar impact in the homebound. Our study had several limitations. First, symptom burden data were only available for a single time point, and our analysis, therefore, could not capture the dynamic changes in symptom burden that may occur for patients over time. Second, we used a definition of severe symptom burden that included 45% of the study sample and did not differentiate between
Table 3 Cox Proportional Hazards Model: Severe Symptom Burden as a Predictor of Hospitalization, Nursing Home Placement, and Death Adjusted Modela
Unadjusted Model Outcome Time to first hospitalization Time to nursing home placement Time to death
95% CI
Hazards Ratio
95% CI
1.75b 1.04 1.31
1.28e2.40 0.55e1.95 0.98e1.75
1.51b 0.70 1.32
1.06e2.15 0.33e1.49 0.95e1.83
Model adjusted for age, depression, disease burden (Charlson Comorbidity Index >5), and self-completion of the Edmonton Symptom Assessment Scale. P < 0.05.
a b
Hazards Ratio
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specific symptoms. Although we believe our definition of symptom burden reflects clinically useful indices of disease and health needs, we recognize that other definitions have been and could be used with potentially differing results. Third, we limited our chart review to hospitalizations at the Mount Sinai Hospital System, potentially underestimating the number of hospitalizations in this patient cohort. And finally, we studied a sample of elderly homebound patients enrolled in an urban home-based primary and palliative care program; the results from this study may not be generalizable to the broader homebound patient population or to homebound elderly enrolled in other in-home care programs.
Conclusion Despite these limitations, our research characterizes homebound elders with multiple medical conditions who are most likely to have severe symptom burden. This study also describes a positive association between severe symptoms and time to hospitalization in the elderly homebound population. Because of their multiple chronic medical issues, the symptomatic homebound need a more holistic approach to care that HBPC and palliative care programs are uniquely positioned to provide. As this patient population grows, the need for innovative models of in-home symptom burden management will increase. We propose that symptom burden severity, irrespective of the specific symptom or underlying chronic disease, may be an important way to guide symptom management and treatment strategies with the potential benefit of reducing unnecessary hospitalizations.
Disclosures and Acknowledgments Nancy Yang received funding from the Mount Sinai Patricia S. Levinson Summer Fellowship for Community Oriented Research and Service and support from the Medical Student Training in Aging Research program to complete this research. Dr. Ornstein was supported by National Institute on Aging K01AG047923 and the National Palliative Care Research Center. The authors declare no potential personal or financial conflicts of interest. The authors acknowledge the Mount Sinai Visiting Doctors Program for their support.
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3. Centers for Disease Control and Prevention. The state of aging and health in America 2013. Atlanta, GA: Centers for Disease Control and Prevention, Dept. of Health and Human Services, 2013. 4. Walke LM, Gallo WT, Tinetti ME, Fried TR. The burden of symptoms among community-dwelling older persons with advanced chronic disease. Arch Intern Med 2004;164: 2321e2324. 5. Blinderman CD, Homel P, Billings JA, et al. Symptom distress and quality of life in patients with advanced congestive heart failure. J Pain Symptom Manage 2008;35:594e603. 6. Salive ME. Multimorbidity in older adults. Epidemiol Rev 2013;35:75e83. 7. Fabbri E, Zoli M, Gonzalez-Freire M, et al. Aging and multimorbidity: new tasks, priorities, and frontiers for integrated gerontological and clinical research. J Am Med Dir Assoc 2015;16:640e647. 8. Cleeland CS, Reyes-Gibby CC. When is it justified to treat symptoms? Measuring symptom burden. Oncology (Williston Park) 2002;16:64e70. 9. Walke LM, Byers AL, Gallo WT, et al. The association of symptoms with health outcomes in chronically ill adults. J Pain Symptom Manage 2007;33:58e66. 10. Takemasa S. Factors affecting QOL of the home-bound elderly disabled. Kobe J Med Sci 1998;44:99e114. 11. Qiu WQ, Dean M, Liu T, et al. Physical and mental health of homebound older adults: an overlooked population. J Am Geriatr Soc 2010;58:2423e2428. 12. Salanitro AH, Hovater M, Hearld KR, et al. Symptom burden predicts hospitalization independent of comorbidity in community-dwelling older adults. J Am Geriatr Soc 2012; 60:1632e1637. 13. Sheppard KD, Brown CJ, Hearld KR, et al. Symptom burden predicts nursing home admissions among older adults. J Pain Symptom Manage 2013;46:591e597. 14. Ornstein K, Leff B, Covinsky K, et al. Epidemiology of the homebound population in the United States. JAMA Intern Med 2015;175:1180e1186. 15. Kronish IM, Federman AD, Morrison RS, Boal J. Medication utilization in an urban homebound population. J Gerontol A Biol Sci Med Sci 2006;61:411e415. 16. Jencks SF, Williams MV, Coleman EA. Rehospitalizations among patients in the Medicare fee-for-service program. N Engl J Med 2009;360:1418e1428. 17. Desai NR, Smith KL, Boal J. The positive financial contribution of home-based primary care programs: the case of the Mount Sinai Visiting Doctors. J Am Geriatr Soc 2008;56:744e749.
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