Post-Hospital Support Program for the Frail Elderly and Their Caregivers: A Quasi-Experimental Evaluation JULIANNE S. OKTAY, MSW, PHD,
AND
PATRICIA J. VOLLAND, MSW, MBA
Abstract: This paper evaluates the Post-Hospital Support Program for the frail elderly and their caregivers using a quasiexperimental design. The program goals were to reduce stress in the caregivers, improve functioning and reduce mortality in patients, and reduce health service utilization in patients. Subjects were patients at the Johns Hopkins Hospital in Baltimore, Maryland, age 65 or over, who were returning home to the care of a non-paid caregiver and who had extensive post-hospital care needs which were expected to continue for at least one year. The 93 comparison group patient/ caregiver pairs were discharged between May 15, 1983 and May 14, 1984. The 98 treatment group pairs were discharged between May 15, 1984 and May 14, 1985. Interviews were conducted with patients and
caregivers at 1, 3, 6, 9, and 12 months after discharge. Results showed a slight reduction in caregiver stress and a substantial reduction in hospital days used by the treatment group. When confounding and history effects are taken into consideration, an average difference of 6.5 days per patient remains. The data also suggest that the treatment program may have postponed some deaths and nursing home placements. The results suggest that support services for the frail elderly and their caregivers can be cost efficient by reducing hospital length-of-stay. Savings were estimated at $4,585 per patient per year in this study. However, further work is needed to design programs which more effectively reduce caregiver stress. (Am J Public Health 1990; 80:39-46.)
Introduction The elderly population is expanding rapidly and, at the same time, growing proportionately older.' This means more and more elderly will be in need of some type of long-term care.2 The cost for long-term care, especially for institutional care, has been growing considerably faster than the rate of inflation.3 The $33 billion average annual expenditure (1986 90) for nursing home care is expected to expand to over $120 billion by the year 2020.4 Nor are the projected increases limited to nursing home care. For every frail elderly person now in a nursing home, there are two equally frail elderly living in the community.5 Providing home care services for this population is increasingly recognized as an important goal while, at the same time, the potentially explosive costs are greatly feared. A key to achieving good care for the community-based frail elderly population, and avoiding costly institutional care, is the family caregiver, who currently provides 80-90 percent of in-home care in the United States. The Informal Caregivers Survey, conducted as a part of the 1982 Long-Term Care Survey, showed that the typical caregiver of the frail elderly is a 57-year-old married female who is in poor health;6 substantial proportions experience emotional distress and social isolation.7 8 A number of programs designed to support these family caregivers have sprung up around the country, but most of them offer no more than a brief "support group"; these programs have not been systematically evaluated.9 We do not yet know whether a program designed to provide support for the family caregiver can be effective in reducing the negative effects of caregiving, and whether this strategy will lead to a reduction in the use of institutional care. This paper describes a study designed to determine the effectiveness of a support program for caregivers of the frail elderly following hospital discharge. The program goals were to reduce stress in the caregivers, improve functioning in patients, reduce mortality in patients,
and reduce cost by reducing health service utilization.
Address reprint requests to Julianne S. Oktay, PhD, School of Social Work and Community Planning, University of Maryland, 525 W. Redwood Street, Baltimore, MD 21201. Ms. Volland is Vice President, Deaton Hospital and Medical Center. This paper, submitted to the Journal September 2, 1988, was revised and accepted for publication June 8, 1989.
© 1990 American Journal of Public Health 0090-0036/90$1.50
AJPH January 1990, Vol. 80, No. 1
Method Treatment Program
The Post-Hospital Support Program provided both medical and social services to the frail elderly and their families for one year following hospitalization. A coordinated approach was provided by a project team made up of a nurse and a social worker. Services included assessment, case management, skilled nursing, counseling, referrals, respite, education, support group, medical back-up, and on-call help. All cases received a minimum of one nurse and one social work visit per month. However, the amount of service depended on need. The service differed from what is usually available in the Baltimore area not only in the amount of service, but also in its coordinated medical-social approach. Focus was on the caregiver/patient configuration and not primarily on the patient; service was closely coordinated with the hospital inpatient and outpatient services; and service extended for one year post-discharge, regardless of the health status of the patient. Additional services were available, such as respite, some "gap filling" money (used primarily for incontinence supplies), and a support group. A more detailed description of the treatment program is provided in Appendix A. Subjects
Subjects were inpatients at the Johns Hopkins Hospital who gave informed consent and who met the following eligibility criteria: * Post-hospital care would be provided by a non-paid
caregiver.
* Post-hospital needs were comparable to those of patients in "skilled" nursing facilities. (A measure, used by the State of New York-the DSM-1'0°-to determine eligibility for "skilled" care, was used to determine level of need. Patients with scores of 180 or more were eligible for the study.) * Post-hospital care needs were chronic (expected to last at least one year) and long-lasting (patient expected to live at least one year). 39
OKTAY AND VOLLAND
* Patient residence was within 20 miles of the Hospital. Design and Procedures The design was quasi-experimental. " Patients who were discharged from the hospital between May 15, 1983 and May 14, 1984 constituted the comparison group; 93 patients and caregivers who met the eligibility criteria and agreed to participate during the first year of the study formed the comparison group. Patients discharged between May 15, 1984 and May 14, 1985 constituted the treatment group; 98 cases who met the eligibility criteria and agreed to participate in the second year formed the treatment group. The refusal rate was about 10 percent for both groups. Both patients and caregivers were interviewed within one month of discharge, and again at 3, 6, 9, and 12 months post-discharge. At the final interview, there were 50 patient/caregiver pairs in the comparison group and 62 patient/caregiver pairs in the treatment group. The interviews, which were identical for the two groups, were conducted by trained interviewers. Interviewers attended weekly supervisory sessions. Although there was no way to blind the interviewers, they were not aware of the pattern of the design, and did not seem to differentiate between comparison and treatment groups. Measurement
Caregiver Stress-Caregiver stress was measured in three ways: The 27-item General Health Questionnaire (sensitivity = 88 percent, specificity = 84 percent)'2 was used to measure overall stress level. We also used a symptom checklist for measuring physical health (alpha = 82, interrater reliability = .88). '3 A measure of the extent to which caregiving was having a negative impact on the social functioning of the caregiver (Negative Impact of Caregivers Scale) was also included.'4 Finally, caregiver utilization of health services was measured with caregiver report. Patient Functioning-Patient functioning was measured with the Katz Activities of Daily Living Scale (ADL)'5 (coefficient of reproducibility = .94-.98), three items* from the Instrumental Activities of Daily Living Scale (IADL)'6 (reproductibility = .94) and the Mental Status Questionnaire (MSQ)'7 (alpha = .84, test-retest reliability = .8). The ADL and IADL were based on caregiver report. The MSQ was given directly to the patient. Patient Utilization of Services-At the 3, 6, 9 and 12 month interviews, utilization of a wide range of health services was determined (by caregiver report) including: physician and emergency room visits, nursing home days, use of home health nurse, home health aide, respite, transportation, social work, and other in-home services. In addition, hospital records were examined to determine hospital days used by the patient. Data Analysis
Caregiver stress and patient functioning were measured with proportional change scores in each of the four time periods (0-3 months, 3-6 months, 6-9 months, and 9-12 months). That is, the time one score was subtracted from the time two score. This difference was then divided by the maximum change possible given the time one score. Thus if a patient scored "8" on the Mental Status Questionnaire, the maximum positive change would have been "2" because the maximum score on the scale is "10". If the change was *The items were: handling the telephone, handling own medication, and handling own finances.
40
negative, it was divided by the maximum negative change possible-in this case "-8". The resulting score ranges from -1 to +1. A score of "0" represents no change. "+.50" represents an improvement of 50% of the possible improvement, given the time-one score. The use of a proportional change score compensates for different amounts of possible change based on any uneven distribution of initial scores. All cases who were available at the two time points were included in the analysis. Thus a patient who died seven months after discharge would be included in the 0-3 and 3-6 month measures but not in the 6-9 or 9-12 month ones. Thus the number of cases decreases over the four time periods. A 0-12 month figure is also included for those who remained in the program for 12 months. Mortality data are analyzed using the Mantel-Haenszel odds ratio for each of the four time periods and the total 12-month period. A Kaplan-Meier survival curve is also presented. In analyzing service utilization, descriptive measures (e.g., percents, means) are used for each of the time periods. For hospital days and outpatient visits, means are calculated for the entire group and again for the patients who stayed in the study for 12 months. This is to eliminate the effect of any differential mortality or institutional placement rates in the two groups. Results Sample Characteristics
The 191 patients in the study were predominantly female (61 percent) Black (76 percent) widowed (53 percent). The mean age was 76 years. Mean annual income was $3,880. One-third were on Medicaid; 63 percent had less than eight years of education. The mean DMS-1 score for the study population was 320. An example of a patient with this score would be Mr. L., "a 71-year-old man with coronary artery disease, diabetes mellitus, hypertension, permanent pacemaker, and glaucoma. He was admitted to the study after being hospitalized for left femoral peroneal bypass. He had extensive wounds extending from the groin to the achilles area requiring daily soaks, dressings and monitoring." In spite of this level of dependency, only 10 percent had poor prognosis; 52 percent had "guarded" or "fair" prognosis, and 38 percent had a good prognosis. The caregivers, 80 percent of whom were female, had a mean age of 53; 30 percent were spouses of the patient, and 35 percent were daughters; 73 percent had been caring for the patient before the hospital episode in which the patient was identified for the study. Comparison of Treatment and Control Groups The two groups were similar on most patient and caregiver demographic characteristics and on medical and functional status (Tables 1 & 2), with two exceptions. In the treatment group, more caregivers were new to the task, and fewer patients had a "good" prognosis. Comparison of Services Received In the Baltimore area, a variety of services were available to the comparison group during the course of the study. For example, home health service (limited to the period of
skilled nursing need) including visiting nurse, home health aide, and social work services were widely available (Table 3). There was also a case management service (continuation of the program evaluated in the National Channeling Demonstration). 18 Transportation was available for Medicaid patients only. A comparison of the rates of service utilization AJPH January 1990, Vol. 80, No. 1
POST-HOSPITAL SUPPORT PROGRAM FOR ELDERLY TABLE 1-Demographic Characteristics of Patients and Caregivers In the Comparison and Treatment Groups Demographic Characteristics of Patients
Comparison Group (N = 93)
Treatment Group (N = 98)
% female % Black % widowed %
AND
PATRICIA J. VOLLAND, MSW, MBA
Abstract: This paper evaluates the Post-Hospital Support Program for the frail elderly and their caregivers using a quasiexperimental design. The program goals were to reduce stress in the caregivers, improve functioning and reduce mortality in patients, and reduce health service utilization in patients. Subjects were patients at the Johns Hopkins Hospital in Baltimore, Maryland, age 65 or over, who were returning home to the care of a non-paid caregiver and who had extensive post-hospital care needs which were expected to continue for at least one year. The 93 comparison group patient/ caregiver pairs were discharged between May 15, 1983 and May 14, 1984. The 98 treatment group pairs were discharged between May 15, 1984 and May 14, 1985. Interviews were conducted with patients and
caregivers at 1, 3, 6, 9, and 12 months after discharge. Results showed a slight reduction in caregiver stress and a substantial reduction in hospital days used by the treatment group. When confounding and history effects are taken into consideration, an average difference of 6.5 days per patient remains. The data also suggest that the treatment program may have postponed some deaths and nursing home placements. The results suggest that support services for the frail elderly and their caregivers can be cost efficient by reducing hospital length-of-stay. Savings were estimated at $4,585 per patient per year in this study. However, further work is needed to design programs which more effectively reduce caregiver stress. (Am J Public Health 1990; 80:39-46.)
Introduction The elderly population is expanding rapidly and, at the same time, growing proportionately older.' This means more and more elderly will be in need of some type of long-term care.2 The cost for long-term care, especially for institutional care, has been growing considerably faster than the rate of inflation.3 The $33 billion average annual expenditure (1986 90) for nursing home care is expected to expand to over $120 billion by the year 2020.4 Nor are the projected increases limited to nursing home care. For every frail elderly person now in a nursing home, there are two equally frail elderly living in the community.5 Providing home care services for this population is increasingly recognized as an important goal while, at the same time, the potentially explosive costs are greatly feared. A key to achieving good care for the community-based frail elderly population, and avoiding costly institutional care, is the family caregiver, who currently provides 80-90 percent of in-home care in the United States. The Informal Caregivers Survey, conducted as a part of the 1982 Long-Term Care Survey, showed that the typical caregiver of the frail elderly is a 57-year-old married female who is in poor health;6 substantial proportions experience emotional distress and social isolation.7 8 A number of programs designed to support these family caregivers have sprung up around the country, but most of them offer no more than a brief "support group"; these programs have not been systematically evaluated.9 We do not yet know whether a program designed to provide support for the family caregiver can be effective in reducing the negative effects of caregiving, and whether this strategy will lead to a reduction in the use of institutional care. This paper describes a study designed to determine the effectiveness of a support program for caregivers of the frail elderly following hospital discharge. The program goals were to reduce stress in the caregivers, improve functioning in patients, reduce mortality in patients,
and reduce cost by reducing health service utilization.
Address reprint requests to Julianne S. Oktay, PhD, School of Social Work and Community Planning, University of Maryland, 525 W. Redwood Street, Baltimore, MD 21201. Ms. Volland is Vice President, Deaton Hospital and Medical Center. This paper, submitted to the Journal September 2, 1988, was revised and accepted for publication June 8, 1989.
© 1990 American Journal of Public Health 0090-0036/90$1.50
AJPH January 1990, Vol. 80, No. 1
Method Treatment Program
The Post-Hospital Support Program provided both medical and social services to the frail elderly and their families for one year following hospitalization. A coordinated approach was provided by a project team made up of a nurse and a social worker. Services included assessment, case management, skilled nursing, counseling, referrals, respite, education, support group, medical back-up, and on-call help. All cases received a minimum of one nurse and one social work visit per month. However, the amount of service depended on need. The service differed from what is usually available in the Baltimore area not only in the amount of service, but also in its coordinated medical-social approach. Focus was on the caregiver/patient configuration and not primarily on the patient; service was closely coordinated with the hospital inpatient and outpatient services; and service extended for one year post-discharge, regardless of the health status of the patient. Additional services were available, such as respite, some "gap filling" money (used primarily for incontinence supplies), and a support group. A more detailed description of the treatment program is provided in Appendix A. Subjects
Subjects were inpatients at the Johns Hopkins Hospital who gave informed consent and who met the following eligibility criteria: * Post-hospital care would be provided by a non-paid
caregiver.
* Post-hospital needs were comparable to those of patients in "skilled" nursing facilities. (A measure, used by the State of New York-the DSM-1'0°-to determine eligibility for "skilled" care, was used to determine level of need. Patients with scores of 180 or more were eligible for the study.) * Post-hospital care needs were chronic (expected to last at least one year) and long-lasting (patient expected to live at least one year). 39
OKTAY AND VOLLAND
* Patient residence was within 20 miles of the Hospital. Design and Procedures The design was quasi-experimental. " Patients who were discharged from the hospital between May 15, 1983 and May 14, 1984 constituted the comparison group; 93 patients and caregivers who met the eligibility criteria and agreed to participate during the first year of the study formed the comparison group. Patients discharged between May 15, 1984 and May 14, 1985 constituted the treatment group; 98 cases who met the eligibility criteria and agreed to participate in the second year formed the treatment group. The refusal rate was about 10 percent for both groups. Both patients and caregivers were interviewed within one month of discharge, and again at 3, 6, 9, and 12 months post-discharge. At the final interview, there were 50 patient/caregiver pairs in the comparison group and 62 patient/caregiver pairs in the treatment group. The interviews, which were identical for the two groups, were conducted by trained interviewers. Interviewers attended weekly supervisory sessions. Although there was no way to blind the interviewers, they were not aware of the pattern of the design, and did not seem to differentiate between comparison and treatment groups. Measurement
Caregiver Stress-Caregiver stress was measured in three ways: The 27-item General Health Questionnaire (sensitivity = 88 percent, specificity = 84 percent)'2 was used to measure overall stress level. We also used a symptom checklist for measuring physical health (alpha = 82, interrater reliability = .88). '3 A measure of the extent to which caregiving was having a negative impact on the social functioning of the caregiver (Negative Impact of Caregivers Scale) was also included.'4 Finally, caregiver utilization of health services was measured with caregiver report. Patient Functioning-Patient functioning was measured with the Katz Activities of Daily Living Scale (ADL)'5 (coefficient of reproducibility = .94-.98), three items* from the Instrumental Activities of Daily Living Scale (IADL)'6 (reproductibility = .94) and the Mental Status Questionnaire (MSQ)'7 (alpha = .84, test-retest reliability = .8). The ADL and IADL were based on caregiver report. The MSQ was given directly to the patient. Patient Utilization of Services-At the 3, 6, 9 and 12 month interviews, utilization of a wide range of health services was determined (by caregiver report) including: physician and emergency room visits, nursing home days, use of home health nurse, home health aide, respite, transportation, social work, and other in-home services. In addition, hospital records were examined to determine hospital days used by the patient. Data Analysis
Caregiver stress and patient functioning were measured with proportional change scores in each of the four time periods (0-3 months, 3-6 months, 6-9 months, and 9-12 months). That is, the time one score was subtracted from the time two score. This difference was then divided by the maximum change possible given the time one score. Thus if a patient scored "8" on the Mental Status Questionnaire, the maximum positive change would have been "2" because the maximum score on the scale is "10". If the change was *The items were: handling the telephone, handling own medication, and handling own finances.
40
negative, it was divided by the maximum negative change possible-in this case "-8". The resulting score ranges from -1 to +1. A score of "0" represents no change. "+.50" represents an improvement of 50% of the possible improvement, given the time-one score. The use of a proportional change score compensates for different amounts of possible change based on any uneven distribution of initial scores. All cases who were available at the two time points were included in the analysis. Thus a patient who died seven months after discharge would be included in the 0-3 and 3-6 month measures but not in the 6-9 or 9-12 month ones. Thus the number of cases decreases over the four time periods. A 0-12 month figure is also included for those who remained in the program for 12 months. Mortality data are analyzed using the Mantel-Haenszel odds ratio for each of the four time periods and the total 12-month period. A Kaplan-Meier survival curve is also presented. In analyzing service utilization, descriptive measures (e.g., percents, means) are used for each of the time periods. For hospital days and outpatient visits, means are calculated for the entire group and again for the patients who stayed in the study for 12 months. This is to eliminate the effect of any differential mortality or institutional placement rates in the two groups. Results Sample Characteristics
The 191 patients in the study were predominantly female (61 percent) Black (76 percent) widowed (53 percent). The mean age was 76 years. Mean annual income was $3,880. One-third were on Medicaid; 63 percent had less than eight years of education. The mean DMS-1 score for the study population was 320. An example of a patient with this score would be Mr. L., "a 71-year-old man with coronary artery disease, diabetes mellitus, hypertension, permanent pacemaker, and glaucoma. He was admitted to the study after being hospitalized for left femoral peroneal bypass. He had extensive wounds extending from the groin to the achilles area requiring daily soaks, dressings and monitoring." In spite of this level of dependency, only 10 percent had poor prognosis; 52 percent had "guarded" or "fair" prognosis, and 38 percent had a good prognosis. The caregivers, 80 percent of whom were female, had a mean age of 53; 30 percent were spouses of the patient, and 35 percent were daughters; 73 percent had been caring for the patient before the hospital episode in which the patient was identified for the study. Comparison of Treatment and Control Groups The two groups were similar on most patient and caregiver demographic characteristics and on medical and functional status (Tables 1 & 2), with two exceptions. In the treatment group, more caregivers were new to the task, and fewer patients had a "good" prognosis. Comparison of Services Received In the Baltimore area, a variety of services were available to the comparison group during the course of the study. For example, home health service (limited to the period of
skilled nursing need) including visiting nurse, home health aide, and social work services were widely available (Table 3). There was also a case management service (continuation of the program evaluated in the National Channeling Demonstration). 18 Transportation was available for Medicaid patients only. A comparison of the rates of service utilization AJPH January 1990, Vol. 80, No. 1
POST-HOSPITAL SUPPORT PROGRAM FOR ELDERLY TABLE 1-Demographic Characteristics of Patients and Caregivers In the Comparison and Treatment Groups Demographic Characteristics of Patients
Comparison Group (N = 93)
Treatment Group (N = 98)
% female % Black % widowed %
