- Email: [email protected]
Retaining Women in HIV Medical Care
Retaining Women in HIV Medical Care Marcia Andersen, PhD, RN, FAAN, CS Elaine Hockman, PhD Geoffrey Smereck, JD Jannie Tinsley, MSN, RN, MHA Dollie Milfort, BSN, RN Robert Wilcox, BSN, RN Teresa Smith Christopher Connelly, MA Latonia Adams, LPN Richard Thomas
This study evaluated the effectiveness of an ancillary service assignment protocol to improve women’s retention in HIV medical care. HIV-positive women with acknowledged difficulty in keeping regularly scheduled HIV clinic appointments were assigned to an intervention based on presenting characteristics: 6 months transportation plus nursing case management followed by 6 months transportation only for women currently using heroin and/or showing mental illness problems or transportation only for 12 months. Self-report and HIV clinic data provided measures of kept and missed appointments. Results were as hypothesized. The Transportation Only sample maintained number of kept appointments and significantly decreased number of missed appointments. The Transportation Plus sample significantly increased number of appointments kept and significantly decreased number of missed appointments. When intensive intervention was reduced to transportation only, charted HIV medical appointments significantly decreased. Positive influence on retention in HIV medical care requires level of intervention to be determined by current relevant client characteristics. Key words: HIV-positive women, ancillary services, heroin, mental illness, retention in medical care
Mental illness, substance abuse, and transportation problems have repeatedly been associated with poor engagement and retention in HIV-related primary care (Andersen et al., 2005; Knowlton et al., 2001; Lundgren, Chassler, Ben-Ami, Purington, & Schilling, 2005; Stoskoph, Yang, & Glover, 2001).
Ancillary Services Receipt of ancillary services such as case management and transportation has been shown to improve retention in HIV-related primary care for women living with HIV/AIDS (Andersen et al., 2005; Magnus et al., 2001). For more than 10 years, nurses at the Well-Being Institute (WBI), a nursing outreach clinic in downtown Detroit, have been locating women living with HIV who have been lost to follow-up HIV medical care and reconnecting them to HIV medical care. WBI nurses’ experience strongly indicates that nearly all of their clients need reliable Marcia Andersen is at the Well-Being Institute in Ann Arbor, MI. Elaine Hockman is a research consultant in Ann Arbor. Geoffrey Smereck, Jannie Tinsley, Dollie Milfort, Robert Wilcox, Teresa Smith, Christopher Connelly, Latonia Adams, and Richard Thomas are also at the Well-Being Institute in Ann Arbor.
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 18, No. 3, May/June 2007, 33-41 doi:10.1016/j.jana.2007.03.007 Copyright © 2007 Association of Nurses in AIDS Care
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transportation to keep regularly scheduled medical appointments. The buses of the public transportation system in Detroit do not always run on time. Bus routes tend to follow only major streets, thus requiring multiple transfers and a lot of time to reach most destinations. Many women live several blocks from bus stops. For the ill, the walk may be too far. Also, weather conditions— extreme cold, snow, ice, rain, or extreme heat—make bus travel a long and difficult journey. Most of these women do not have ready access to automobiles, nor are they financially secure enough to afford taxicabs. Research conducted by WBI supports the fact that transportation is a common barrier to receipt of regular HIV medical care (Andersen, Smereck, Hockman, Ross, & Ground, 1999). The nurses at WBI also provide nursing case management as an ancillary service. The WBI nursing case management uses a client-centered approach that has been shown to be effective (Andersen et al., 2005). The approach, called Personalized Nursing LIGHT Model of Care (Andersen & Smereck, 1989, 1992), uses individualized client-identified concerns as the focus of care. Others, such as Magnus et al. (2001) have reported similar results that a clientcentered approach is effective in improving utilization characteristics in a population of low-income, high-risk women (p. 137).
Ancillary Service Level Assignment Despite these encouraging results that provision of transportation services and a client-centered case management approach result in improved retention in HIV medical care, financial realities preclude largescale adoption of these practices. Because of shrinking health care dollars, a consistent level of ancillary services cannot always be provided to all women who are having difficulty keeping their HIV medical appointments. Indeed, a consistent level may not be necessary. Instead, levels of ancillary services may be adapted to the needs of individual women. Adapting levels of service to client characteristics is the basic premise of this study. This approach is suggested by data from an earlier WBI study (Andersen et al., 2005) that reported that current heroin use in the past 30 days and current mental health symptoms
can differentiate intensity of intervention required to effect the desired outcome of retention in HIV primary medical care. The WBI results are further supported in the literature (Knowlton et al., 2001; Magnus et al., 2001; Stoskopf et al., 2001).
Study Purpose The purpose of this study was to evaluate the effectiveness of ancillary service assignment procedures as a way to retain women in HIV primary medical care. Based upon previous research, the two protocols under investigation concentrate on two populations of HIV-positive women who show problems with keeping their medical appointments. The two populations represent different levels of need. The first, which will be referred to as Transportation Only, consisted of women who did not acknowledge mental health problems and were not recent heroin users. The second, which will be referred to as Transportation Plus, consisted of women who were currently using heroin and/or acknowledged mental health problems. The overarching hypothesis of the study was that providing an intervention adapted to the level of need can effect positive outcomes. As implied by the name, for Transportation Only, the ensuing intervention consisted of just transportation; for Transportation Plus, transportation and auxiliary nursing case management services.
Methods Study Population Urban HIV-positive women who were only loosely connected to HIV primary medical care defined the population for this study. A total of 112 adult women living in the Detroit area were recruited for participation in the study. Some of the participants were already known to WBI from prior studies and were recruited directly by WBI staff. However, case managers and local programs that serve the HIV community in Detroit referred most of the women to this study.
Anderson et al / Retention in Care
Eligibility. Women at least 18 years old living with HIV were eligible for the study if WBI screening staff determined that they were only loosely connected to routine HIV medical care. Any of the following screening criteria defined “loosely connected” for the purposes of this study: ● ● ● ●
Went more than 4 months without an HIV-related medical appointment Reported having problems keeping HIV-related medical appointments Reported missing one or more HIV-related medical appointments in the past year Reported having no scheduled HIV-related medical appointment
This study was funded as part of the Ryan White Special Projects of National Significance Targeted HIV Outreach and Intervention Model Development Initiative. Both the WBI and Wayne State University internal review boards approved this study. Women signed both informed consent and Health Insurance Portability and Accounting Act privacy forms. Study assignments. During the initial interview, nurses asked women about current heroin use and current mental health symptoms and treatment. Women who reported heroin use in the past 30 days were assigned to the more intensive study group intervention. Women who reported that they had been in a mental hospital in the last 6 months or who reported feeling downhearted or depressed most or all of the time during the past 4 weeks were considered to have mental health treatment or symptoms and were also assigned to the more intensive study group intervention, the Transportation Plus Personalized Nursing Counseling Study Group. Women who did not report the previously mentioned heroin use or mental health treatment or symptoms were assigned to the Transportation Only study group. Other drug use (alcohol, crack, marijuana) has been for the most part a consistent characteristic of this population (89%), thus a poor predictor of who may need enhanced intervention.
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Study Interventions The active intervention period for each participant, regardless of study group, was 1 year. Transportation was available weekly to both study samples for a 12-month period starting with study admission. Transportation Only study. A total of 61 women (54.5%) were assigned the less intensive intervention. A card with an 800 number to call any time they needed transportation to any medical appointment related to their HIV disease was provided and explained. Once a request was made, transportation to and from the doctor’s office was provided in a WBI van. Transportation was available weekly for a 12-month period. Transportation Plus Personalized Nursing Counseling study. A total of 51 women (45.5%) were assigned to the more intensive intervention. They received transportation for 12 months after study admission, as described previously. In addition, for the first 6 months they were assigned to a project nurse who was trained in the use of the Personalized Nursing LIGHT Model (Andersen & Smereck, 1989, 1992). For the second 6 months their intervention consisted of transportation only. During the more intensive intervention in the first 6 months, nurses used the LIGHT model in their interactions with the client toward a goal of eliminating accessto-care barriers. Nurses made at least one home visit, and in many cases most of the nursing counseling occurred in the client’s home. Nurses accompanied the woman on at least one visit to the woman’s HIV primary care physician to understand and translate the medical treatment plan to the client. Nurses assisted each client in identifying her own focal concerns in her life, and the nurse helped her address each concern with a focus on improving her sense of well-being. Many women were referred to drug treatment or accompanied to mental health appointments as part of this intensive nurse counseling intervention. A direct referral method that included transportation and accompaniment, called hyperlinking, was used in this process (Andersen et al., 1999). The Personalized Nursing LIGHT Model is described in many publications (Andersen & Hockman, 1997; Andersen & Smereck, 1989, 1992;
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Andersen, Smereck, & Braunstein, 1993; Andersen et al., 1999; Andersen et al., 2005). The LIGHT Model posits that positive changes among hard-toreach populations having histories of nonresponsiveness to more traditional treatment methods may be achieved indirectly through a direct intervention on the perceived well-being of the individual. The wellbeing of clients is enhanced when clients themselves take action to remedy their focal concerns. Nurse/ outreach worker teams help each client plan concrete action to be taken by the client to improve her own well-being. Staff gently emphasize that each client must take action to remedy her focal concerns, which have been identified by the client and nurse working together. Nurses assist clients to identify their talents in addition to their concerns. Using their talents, clients are helped to restructure their time to include positive activities. Data Collection Participants were interviewed at study admission and scheduled for follow-up interviews at approximately 6 months and 12 months. A nurse conducted the admissions interview. Project interviewers conducted the follow-up interviews. If a client could not be located easily, project nurses conducted follow up interviews in jails, nursing homes, or in the client’s home. The follow-up interview window was 2 months on either side of the target date. Dependent variables. Measures of kept HIV medical appointments were derived from two sources: self-report from the face-to-face interviews and chart review for those women using an inner-city university clinic (105 of 112 participants). Interviews also provided a self-report of missed appointments. Appointment data covered 6-month periods: the 6 months before study enrollment; 6 months of the major interventions, and 6 months of transportation only for all participants. Hypotheses Transportation Only. It was hypothesized that women who were loosely connected to HIV medical care and who had no current heroin use and were not
experiencing mental health symptoms would be able to become connected to and retained in HIV medical care with just the offer of transportation to and from medical appointments. Transportation Plus. It was hypothesized that women who were currently using heroin or experiencing mental health symptoms would be able to become connected to and retained in HIV medical care with availability of nursing counseling personalized to their own situation. It was also hypothesized that after the counseling 6-month period ended and only transportation was available, women assigned to this group would not be able to maintain their attendance at their HIV medical care appointments at the same level they had attained under augmented services treatment. Because the two study samples were drawn from distinct populations and thus were expected to differ at enrollment with respect to HIV status-related variables, direct comparison between the two with respect to study outcomes was not advised. Repeated measures analysis of variance and chi-square were used to test the hypotheses within each study.
Results Sample Characteristics Sample demographic characteristics are displayed in Table 1. There were no significant differences between the two samples. The two study samples were predominantly Black, of limited education (47% had not completed high school), with limited income, and living on their own. The majority were on Medicaid. With respect to characteristics related to their medical care at the start of the study, nearly everyone (87% of Transportation Only and 90% of Transportation Plus) needed transportation, but less than half had received transportation (49% of Transportation Only and 48% of Transportation Plus). More than half reported that they missed appointments because of transportation problems (53% of Transportation Only and 64% of Transportation Plus). These figures emphasize the prevalent need for the transportation portion of the interventions. To confirm that both
Anderson et al / Retention in Care Table 1.
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Demographic Characteristics by Study Sample and All Participants
Demographic Age Years of education Monthly income
Transportation Only, N ⴝ 61 Mean (SD)
Transportation Plus. N ⴝ 51 Mean (SD)
All Participants Mean (SD)
45.2 (8.11) 11.5 (2.09) $ 594 (348.64)
44.4 (8.58) 11.2 (1.79) $ 576 (738.93)
44.8 (8.30) 11.4 (1.95) $ 586 (559.88)
Percent
Percent
Percent
Race Black, African American White Multiracial Other
91.2 8.2 — —
90.2 3.9 3.9 2.0
91.1 6.3 1.8 .9
Marital status Single/never married Separated Divorced Widowed Committed relationship Legally married
57.4 4.9 14.8 9.8 6.6 6.6
43.1 3.9 25.5 5.9 15.7 5.9
50.9 4.5 19.6 8.0 10.7 6.3
Living arrangement Own home/apartment Other’s home/apartment Transitional housing Shelter Residential treatment program Group home Other
70.5 14.8 6.6 3.3 1.6 1.6 —
70.6 15.7 7.8 2.0 — — 2.0
70.5 15.2 7.1 2.7 .9 .9 .9
Has health insurance On Medicaid
93.4 82.0
96.1 78.4
94.6 80.4
samples were loosely connected to health care at enrollment, only 21% of Transportation Only and 10% of Transportation Plus samples reported keeping all their HIV medical appointments during the 6-month period before enrollment. This difference was not significant (chi-square ⫽ 2.727, p ⫽ .099). The wisdom of providing augmented services for those eligible for Transportation Plus is based on the assumption that these women who have substance abuse and/or mental health problems are more vulnerable with respect to their health. This assumption is confirmed by the significant difference between the two samples with respect to HIV medication status. Two thirds of the Transportation Only sample (66%) were currently taking HIV medication, whereas less
than half of Transportation Plus sample (41%) reported being on these meds (chi-square ⫽ 6.667, p ⫽ .010). This can be interpreted as evidence of not seeing one’s doctor rather than medical necessity. Hypothesis Testing Because the two study samples represent different populations, thus being nonequivalent control groups, each was analyzed separately. Mean number of charted HIV medical visits for the 6 months before study entry, the 6 months of study intervention, and 6 months of Transportation Only intervention were compared using repeated measures analysis of variance followed by planned contrasts to compare suc-
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cessive means. The chart review data can be considered an intent to treat analysis, because charts were reviewed for all participants using the inner-city university clinic. The time intervals for reviewing charts corresponded exactly to the 6 months preceding enrollment, the first 6 months after enrollment when the major intervention was offered, and the second 6 months for the follow-up transportation only period. Thus, chart reviews corresponded to 18 consecutive months, regardless of the extent of contact between WBI and participants. For the self-reported medical visits and missed appointments, a multivariate repeated measures analysis of variance was used to compare the values for the same three nominal time periods. The interview questions asked, “In the past 6 months, did you. . .?” Because interviews did not occur in precise consecutive 6-month time slots, the 6-month intervals of chart review do not correspond exactly to the 6-month intervals from the participant’s point of view. For Transportation Only, the overall differences among the means of number of charted HIV medical visits did not differ significantly (F [2, 112] ⫽ 1.823, p ⫽ .166). For the contrasts, the difference between visits before entry and first intervention period did not differ (F [1, 56] ⬍ 1). However, the contrast between the first intervention period and the second was significant (F [1, 56] ⫽ 5.196, p ⫽ .026). The means for the three periods were 1.33, 1.47, and 1.09. The Transportation Only sample showed no significant differences with respect to self-reported HIV medical visits either across all three time periods or between successive values. The three means were 2.51, 2.38, and 2.46; all three Fs were less than 1. However, with respect to self-reported missed appointments, significant differences were reported. The three means were 1.92, .72, and 1.03; the corresponding Fs were, for time, 11.534, p ⬍ .001; for the first contrast between the prior 6 months and first 6 months of intervention, 16.262, p ⬍ .001; and for the second contrast between the 6 months of first intervention period and last period, F ⫽ 1.888, p ⫽ .177. The number of missed appointments declined significantly during the major intervention period for the Transportation Only sample. Stronger results were reported for Transportation Plus. The analysis of charted HIV medical visits showed an overall F (2, 94) of 5.160, p ⫽ .007. Both
contrasts were significant: between the prior 6 months and 6 months of major intervention, the F (1, 30) ⫽ 5.668, p ⫽ .021, and between 6 months of major intervention and 6 months of transportation only, the contrast F ⫽ 9.173, p ⫽ .004. The corresponding means were 1.08, 1.60, and 1.04. These results confirm the hypothesis for this sample: when given both transportation and individualized nursing intervention, the number of HIV medical visits increased. When the nursing component was withdrawn, the number of HIV medical visits decreased. With respect to the self-reported number of HIV medical visits, the overall F (2, 60) ⫽ 4.444, p ⫽ .016. The contrast between the 6 months prior and the 6 months of major intervention was significant, F (1, 30) ⫽ 5.070, p ⫽ .032. This result reflects a significant increase in number of HIV medical visits reported. The contrast between the major intervention and the transportation follow-up period was not significant, F ⬍ 1. The corresponding three means were 1.45, 2.16, and 2.16. A similar result was reported for number of missed appointments. The overall F (2, 60) ⫽ 5.103, p ⫽ .009, with contrast between prior 6 months and 6 months of intervention resulting in an F (1, 30) ⫽ 8.521, p ⫽ .007, representing a significant decrease in number of missed appointments. The contrast between the 6 months of major intervention and transportation only follow-up was not significant, F ⬍ 1. The corresponding means were 1.68, .90, and .74. Charting the pattern of mean differences over time for the two samples provided a clear description of the kinds of changes that occurred. Figures 1, 2, and 3 show charted HIV medical visits, self-reported HIV medical visits, and self-reported missed HIV medical visits for the two samples. Three response patterns summarize the self-reported kept and missed appointments: no HIV medical visits, HIV medical visits present but missed at least one appointment, and HIV medical visits present and no appointments missed. As the percentages in Table 2 show, the number of participants improving their retention in HIV medical care increased. Using only those women with all three interviews, the Friedman analysis of variance chisquare for Transportation Only was 5.494, p ⫽ .064; for Transportation Plus, 21.171, p ⬍ .001. Thus, not only in terms of number of visits but also in terms of
Anderson et al / Retention in Care
Figure 1. Changes in mean number of HIV medical visits from chart review by study sample. NOTE: CI ⴝ confidence interval.
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Figure 3. Changes in mean number of self-reported missed HIV medical visits by study sample. NOTE: CI ⴝ confidence interval.
Discussion
Figure 2. Changes in mean number of self-reported HIV medical visits by study sample. NOTE: CI ⴝ confidence interval.
number of patients, significant impact on retention in HIV care was observed when level of intervention is designed to correspond with level of need.
Hypotheses for this study were confirmed. For an HIV-positive sample of women not using heroin and not reporting mental illness symptoms, providing transportation alone is effective in retaining them in HIV medical care. For an HIV-positive sample of women who do report current heroin use and/or mental illness symptoms, transportation plus an individualized nursing counseling outreach intervention has the effect of improving and retaining women’s attendance in HIV medical care. Nurses using the Personalized Nursing LIGHT Model of Care for the women receiving the intense intervention gathered personalized information about barriers to the receipt of routine HIV care and worked with the women to eliminate the self-identified barriers. Nurses reported that women seemed to be helped by listing barriers and concerns and then working with the nurses to approach each barrier and concern. They reported that the women’s sense of being overwhelmed by self-identified concerns and not knowing where in the community to seek help decreased over the 6-month nursing intervention. The positive effects were not always permanent. The intervention must be sustained to sustain the
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Table 2.
Patterns of Self-Report HIV Medical Visit Participation Self-Report Before Study Sample
Transportation Only
Transportation Plus
No visits Visits, but missed some Visits, none missed No visits Visits, but missed some Visits, none missed
Self-Report First 6 Months
Self-Report Second 6 Months
Count
%
Count
%
Count
%
9 39 13 15 31 5
14.8 63.9 21.3 29.4 60.8 9.8
8 12 27 3 15 19
17.0 25.5 57.4 8.1 40.5 51.4
5 14 30 3 13 22
10.2 28.6 61.2 7.9 34.2 57.9
gain. The chart review data support a gain for the women in Transportation Plus for the first 6 months after admission but show a decrease during the next 6 months. Although it was hypothesized that women in Transportation Plus needing the more intense intervention would decrease their medical visit attendance with only the offer of transportation during the second 6 months of the study, it was thought that transportation only could maintain attendance for women needing less intervention at admission. The chart review data surprisingly showed that women in Transportation Only also decreased their attendance in the last 6 months of the study. One explanation for this result and a study limitation is that during the final year of the study, budget cuts led to fewer days of available transportation. Whereas in the early days of the study there were multiple sources of funding for the transportation program, during the last year only one source of funding remained. This resulted in staff layoffs and thus fewer days that transportation was available. In an earlier study, desired behavior changes were affected by project wind-down (Andersen, Hockman, & Smereck, 1996). The results when this study was in full effect support the authors’ hypotheses at the 6-month point. The 12-month chart review results showing all clients decreased their visits may be affected by program budget cuts that affected the availability of transportation.
improve retention in HIV medical care. In this study, nurses used two pieces of self-report information (current heroin use and presence of recent mental health hospitalization or symptoms) to make the group assignment decision rather than intensive, extensive, and expensive interviewing and instrumentation often used in such intervention group assignments. The group assignment protocol described in this report can be used by outreach staff, even novices, to make optimal use of scarce resources and limited staff time and still give women the level of service needed to engage and retain them in HIV-related medical care. Women who feel downhearted or depressed or who use heroin need more outreach services to reconnect them to HIV medical care and to retain them in care. These two factors create barriers to seeking out and maintaining connection to the traditional health care community (Larson et al., 2001; Weissman et al., 1995).
Acknowledgement This research was supported by the Health Resources and Services Administration (HRSA) grant # 5 H97HA0019.
References Conclusion The results of this study show that measurement with self-report on several key questions can provide decent information on which to base clinical decisions about the level of intervention needed to
Andersen, M. D., & Hockman, E. M. (1997). Well-being and high-risk drug use among active drug users. In M. Madrid (Ed.), Patterns of Rogerian knowing (pp. 152-166). New York: National League for Nursing Press.
Anderson et al / Retention in Care Andersen, M. D., Hockman, E. M, & Smereck, G. A. D (1996). Effect of a nursing outreach intervention to drug users in Detroit, Michigan. Journal of Drug Issues, 23, 619-634. Andersen, M. D., & Smereck, G. A. D. (1989). Personalized nursing LIGHT model. Nursing Science Quarterly, 2, 120130. Andersen, M. D., & Smereck, G. A. D. (1992). The consciousness rainbow: An explication of Rogerian field pattern manifestations. Nursing Science Quarterly, 5, 120-130. Andersen, M. D., Smereck, G. A. D., & Braunstein, M. S. (1993). LIGHT model: An effective intervention model to change high-risk AIDS behaviors among hard-to-reach urban drug users. American Journal of Drug and Alcohol Abuse, 19, 309-325. Andersen, M. D., Smereck, G. A. D., Hockman, E. M., Ross, D., & Ground, K. (1999). Nurses decrease barriers to health care by “hyperlinking” multiple diagnosed women into care. Journal of the Association of Nurses in AIDS Care, 10, 27-37. Andersen, M., Tinsley, J., Milfort, D., Wilcox, R., Smereck, G., Pfoutz, S., et al. (2005). HIV health care access issues for women living with HIV, mental illness and substance abuse. AIDS Patient Care and STDs, 19, 449-459. Knowlton, A. R., Hoover, D. R., Chung, S., Celentano, D. D., Vlahov, D., & Latkin, C. A. (2001). Access to medical care and service utilization among injection drug users with HIV/ AIDS. Drug and Alcohol Dependence, 64, 55-62. Larson, T. A., Mundy, L., Bartlett, J. G., Brown, V. B., Chase, P., Cherin, D. A., et al. (2001). Finding the underserved: Directions for HIV care in the future. Home Healthcare Services Quarterly: Journal of Community Care, 1/2, 7-27. Lundgren, L., Chassler, D., Ben-Ami, L., Purington, T., & Schilling, R. (2005). Factors associated with emergency room use among injection drug users of African-American, Hispanic and White European background. American Journal on Addictions, 14, 268-280. Magnus, M., Schmidt, N., Kirkhart, K., Schieffelin, C., Fuchs, N., Brown, B., et al. (2001). Association between ancillary services and clinical and behavioral outcomes among HIVinfected women. AIDS Patient Care and STDs, 15, 137-145. Stoskoph, C. H., Yang, K. K., & Glover, S. H. (2001). Addictions services-/dual diagnosis: HIVF and mental illness, a population-based study. Community Mental Health Journal, 37, 469-479. Weissman, G., Melchoir, L. et al. (1995). Women living with substance abuse and HIV disease: Medical care access issues. Journal of the American Medical Women’s Association, 50, 115-120.
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This study evaluated the effectiveness of an ancillary service assignment protocol to improve women’s retention in HIV medical care. HIV-positive women with acknowledged difficulty in keeping regularly scheduled HIV clinic appointments were assigned to an intervention based on presenting characteristics: 6 months transportation plus nursing case management followed by 6 months transportation only for women currently using heroin and/or showing mental illness problems or transportation only for 12 months. Self-report and HIV clinic data provided measures of kept and missed appointments. Results were as hypothesized. The Transportation Only sample maintained number of kept appointments and significantly decreased number of missed appointments. The Transportation Plus sample significantly increased number of appointments kept and significantly decreased number of missed appointments. When intensive intervention was reduced to transportation only, charted HIV medical appointments significantly decreased. Positive influence on retention in HIV medical care requires level of intervention to be determined by current relevant client characteristics. Key words: HIV-positive women, ancillary services, heroin, mental illness, retention in medical care
Mental illness, substance abuse, and transportation problems have repeatedly been associated with poor engagement and retention in HIV-related primary care (Andersen et al., 2005; Knowlton et al., 2001; Lundgren, Chassler, Ben-Ami, Purington, & Schilling, 2005; Stoskoph, Yang, & Glover, 2001).
Ancillary Services Receipt of ancillary services such as case management and transportation has been shown to improve retention in HIV-related primary care for women living with HIV/AIDS (Andersen et al., 2005; Magnus et al., 2001). For more than 10 years, nurses at the Well-Being Institute (WBI), a nursing outreach clinic in downtown Detroit, have been locating women living with HIV who have been lost to follow-up HIV medical care and reconnecting them to HIV medical care. WBI nurses’ experience strongly indicates that nearly all of their clients need reliable Marcia Andersen is at the Well-Being Institute in Ann Arbor, MI. Elaine Hockman is a research consultant in Ann Arbor. Geoffrey Smereck, Jannie Tinsley, Dollie Milfort, Robert Wilcox, Teresa Smith, Christopher Connelly, Latonia Adams, and Richard Thomas are also at the Well-Being Institute in Ann Arbor.
JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 18, No. 3, May/June 2007, 33-41 doi:10.1016/j.jana.2007.03.007 Copyright © 2007 Association of Nurses in AIDS Care
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transportation to keep regularly scheduled medical appointments. The buses of the public transportation system in Detroit do not always run on time. Bus routes tend to follow only major streets, thus requiring multiple transfers and a lot of time to reach most destinations. Many women live several blocks from bus stops. For the ill, the walk may be too far. Also, weather conditions— extreme cold, snow, ice, rain, or extreme heat—make bus travel a long and difficult journey. Most of these women do not have ready access to automobiles, nor are they financially secure enough to afford taxicabs. Research conducted by WBI supports the fact that transportation is a common barrier to receipt of regular HIV medical care (Andersen, Smereck, Hockman, Ross, & Ground, 1999). The nurses at WBI also provide nursing case management as an ancillary service. The WBI nursing case management uses a client-centered approach that has been shown to be effective (Andersen et al., 2005). The approach, called Personalized Nursing LIGHT Model of Care (Andersen & Smereck, 1989, 1992), uses individualized client-identified concerns as the focus of care. Others, such as Magnus et al. (2001) have reported similar results that a clientcentered approach is effective in improving utilization characteristics in a population of low-income, high-risk women (p. 137).
Ancillary Service Level Assignment Despite these encouraging results that provision of transportation services and a client-centered case management approach result in improved retention in HIV medical care, financial realities preclude largescale adoption of these practices. Because of shrinking health care dollars, a consistent level of ancillary services cannot always be provided to all women who are having difficulty keeping their HIV medical appointments. Indeed, a consistent level may not be necessary. Instead, levels of ancillary services may be adapted to the needs of individual women. Adapting levels of service to client characteristics is the basic premise of this study. This approach is suggested by data from an earlier WBI study (Andersen et al., 2005) that reported that current heroin use in the past 30 days and current mental health symptoms
can differentiate intensity of intervention required to effect the desired outcome of retention in HIV primary medical care. The WBI results are further supported in the literature (Knowlton et al., 2001; Magnus et al., 2001; Stoskopf et al., 2001).
Study Purpose The purpose of this study was to evaluate the effectiveness of ancillary service assignment procedures as a way to retain women in HIV primary medical care. Based upon previous research, the two protocols under investigation concentrate on two populations of HIV-positive women who show problems with keeping their medical appointments. The two populations represent different levels of need. The first, which will be referred to as Transportation Only, consisted of women who did not acknowledge mental health problems and were not recent heroin users. The second, which will be referred to as Transportation Plus, consisted of women who were currently using heroin and/or acknowledged mental health problems. The overarching hypothesis of the study was that providing an intervention adapted to the level of need can effect positive outcomes. As implied by the name, for Transportation Only, the ensuing intervention consisted of just transportation; for Transportation Plus, transportation and auxiliary nursing case management services.
Methods Study Population Urban HIV-positive women who were only loosely connected to HIV primary medical care defined the population for this study. A total of 112 adult women living in the Detroit area were recruited for participation in the study. Some of the participants were already known to WBI from prior studies and were recruited directly by WBI staff. However, case managers and local programs that serve the HIV community in Detroit referred most of the women to this study.
Anderson et al / Retention in Care
Eligibility. Women at least 18 years old living with HIV were eligible for the study if WBI screening staff determined that they were only loosely connected to routine HIV medical care. Any of the following screening criteria defined “loosely connected” for the purposes of this study: ● ● ● ●
Went more than 4 months without an HIV-related medical appointment Reported having problems keeping HIV-related medical appointments Reported missing one or more HIV-related medical appointments in the past year Reported having no scheduled HIV-related medical appointment
This study was funded as part of the Ryan White Special Projects of National Significance Targeted HIV Outreach and Intervention Model Development Initiative. Both the WBI and Wayne State University internal review boards approved this study. Women signed both informed consent and Health Insurance Portability and Accounting Act privacy forms. Study assignments. During the initial interview, nurses asked women about current heroin use and current mental health symptoms and treatment. Women who reported heroin use in the past 30 days were assigned to the more intensive study group intervention. Women who reported that they had been in a mental hospital in the last 6 months or who reported feeling downhearted or depressed most or all of the time during the past 4 weeks were considered to have mental health treatment or symptoms and were also assigned to the more intensive study group intervention, the Transportation Plus Personalized Nursing Counseling Study Group. Women who did not report the previously mentioned heroin use or mental health treatment or symptoms were assigned to the Transportation Only study group. Other drug use (alcohol, crack, marijuana) has been for the most part a consistent characteristic of this population (89%), thus a poor predictor of who may need enhanced intervention.
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Study Interventions The active intervention period for each participant, regardless of study group, was 1 year. Transportation was available weekly to both study samples for a 12-month period starting with study admission. Transportation Only study. A total of 61 women (54.5%) were assigned the less intensive intervention. A card with an 800 number to call any time they needed transportation to any medical appointment related to their HIV disease was provided and explained. Once a request was made, transportation to and from the doctor’s office was provided in a WBI van. Transportation was available weekly for a 12-month period. Transportation Plus Personalized Nursing Counseling study. A total of 51 women (45.5%) were assigned to the more intensive intervention. They received transportation for 12 months after study admission, as described previously. In addition, for the first 6 months they were assigned to a project nurse who was trained in the use of the Personalized Nursing LIGHT Model (Andersen & Smereck, 1989, 1992). For the second 6 months their intervention consisted of transportation only. During the more intensive intervention in the first 6 months, nurses used the LIGHT model in their interactions with the client toward a goal of eliminating accessto-care barriers. Nurses made at least one home visit, and in many cases most of the nursing counseling occurred in the client’s home. Nurses accompanied the woman on at least one visit to the woman’s HIV primary care physician to understand and translate the medical treatment plan to the client. Nurses assisted each client in identifying her own focal concerns in her life, and the nurse helped her address each concern with a focus on improving her sense of well-being. Many women were referred to drug treatment or accompanied to mental health appointments as part of this intensive nurse counseling intervention. A direct referral method that included transportation and accompaniment, called hyperlinking, was used in this process (Andersen et al., 1999). The Personalized Nursing LIGHT Model is described in many publications (Andersen & Hockman, 1997; Andersen & Smereck, 1989, 1992;
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Andersen, Smereck, & Braunstein, 1993; Andersen et al., 1999; Andersen et al., 2005). The LIGHT Model posits that positive changes among hard-toreach populations having histories of nonresponsiveness to more traditional treatment methods may be achieved indirectly through a direct intervention on the perceived well-being of the individual. The wellbeing of clients is enhanced when clients themselves take action to remedy their focal concerns. Nurse/ outreach worker teams help each client plan concrete action to be taken by the client to improve her own well-being. Staff gently emphasize that each client must take action to remedy her focal concerns, which have been identified by the client and nurse working together. Nurses assist clients to identify their talents in addition to their concerns. Using their talents, clients are helped to restructure their time to include positive activities. Data Collection Participants were interviewed at study admission and scheduled for follow-up interviews at approximately 6 months and 12 months. A nurse conducted the admissions interview. Project interviewers conducted the follow-up interviews. If a client could not be located easily, project nurses conducted follow up interviews in jails, nursing homes, or in the client’s home. The follow-up interview window was 2 months on either side of the target date. Dependent variables. Measures of kept HIV medical appointments were derived from two sources: self-report from the face-to-face interviews and chart review for those women using an inner-city university clinic (105 of 112 participants). Interviews also provided a self-report of missed appointments. Appointment data covered 6-month periods: the 6 months before study enrollment; 6 months of the major interventions, and 6 months of transportation only for all participants. Hypotheses Transportation Only. It was hypothesized that women who were loosely connected to HIV medical care and who had no current heroin use and were not
experiencing mental health symptoms would be able to become connected to and retained in HIV medical care with just the offer of transportation to and from medical appointments. Transportation Plus. It was hypothesized that women who were currently using heroin or experiencing mental health symptoms would be able to become connected to and retained in HIV medical care with availability of nursing counseling personalized to their own situation. It was also hypothesized that after the counseling 6-month period ended and only transportation was available, women assigned to this group would not be able to maintain their attendance at their HIV medical care appointments at the same level they had attained under augmented services treatment. Because the two study samples were drawn from distinct populations and thus were expected to differ at enrollment with respect to HIV status-related variables, direct comparison between the two with respect to study outcomes was not advised. Repeated measures analysis of variance and chi-square were used to test the hypotheses within each study.
Results Sample Characteristics Sample demographic characteristics are displayed in Table 1. There were no significant differences between the two samples. The two study samples were predominantly Black, of limited education (47% had not completed high school), with limited income, and living on their own. The majority were on Medicaid. With respect to characteristics related to their medical care at the start of the study, nearly everyone (87% of Transportation Only and 90% of Transportation Plus) needed transportation, but less than half had received transportation (49% of Transportation Only and 48% of Transportation Plus). More than half reported that they missed appointments because of transportation problems (53% of Transportation Only and 64% of Transportation Plus). These figures emphasize the prevalent need for the transportation portion of the interventions. To confirm that both
Anderson et al / Retention in Care Table 1.
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Demographic Characteristics by Study Sample and All Participants
Demographic Age Years of education Monthly income
Transportation Only, N ⴝ 61 Mean (SD)
Transportation Plus. N ⴝ 51 Mean (SD)
All Participants Mean (SD)
45.2 (8.11) 11.5 (2.09) $ 594 (348.64)
44.4 (8.58) 11.2 (1.79) $ 576 (738.93)
44.8 (8.30) 11.4 (1.95) $ 586 (559.88)
Percent
Percent
Percent
Race Black, African American White Multiracial Other
91.2 8.2 — —
90.2 3.9 3.9 2.0
91.1 6.3 1.8 .9
Marital status Single/never married Separated Divorced Widowed Committed relationship Legally married
57.4 4.9 14.8 9.8 6.6 6.6
43.1 3.9 25.5 5.9 15.7 5.9
50.9 4.5 19.6 8.0 10.7 6.3
Living arrangement Own home/apartment Other’s home/apartment Transitional housing Shelter Residential treatment program Group home Other
70.5 14.8 6.6 3.3 1.6 1.6 —
70.6 15.7 7.8 2.0 — — 2.0
70.5 15.2 7.1 2.7 .9 .9 .9
Has health insurance On Medicaid
93.4 82.0
96.1 78.4
94.6 80.4
samples were loosely connected to health care at enrollment, only 21% of Transportation Only and 10% of Transportation Plus samples reported keeping all their HIV medical appointments during the 6-month period before enrollment. This difference was not significant (chi-square ⫽ 2.727, p ⫽ .099). The wisdom of providing augmented services for those eligible for Transportation Plus is based on the assumption that these women who have substance abuse and/or mental health problems are more vulnerable with respect to their health. This assumption is confirmed by the significant difference between the two samples with respect to HIV medication status. Two thirds of the Transportation Only sample (66%) were currently taking HIV medication, whereas less
than half of Transportation Plus sample (41%) reported being on these meds (chi-square ⫽ 6.667, p ⫽ .010). This can be interpreted as evidence of not seeing one’s doctor rather than medical necessity. Hypothesis Testing Because the two study samples represent different populations, thus being nonequivalent control groups, each was analyzed separately. Mean number of charted HIV medical visits for the 6 months before study entry, the 6 months of study intervention, and 6 months of Transportation Only intervention were compared using repeated measures analysis of variance followed by planned contrasts to compare suc-
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cessive means. The chart review data can be considered an intent to treat analysis, because charts were reviewed for all participants using the inner-city university clinic. The time intervals for reviewing charts corresponded exactly to the 6 months preceding enrollment, the first 6 months after enrollment when the major intervention was offered, and the second 6 months for the follow-up transportation only period. Thus, chart reviews corresponded to 18 consecutive months, regardless of the extent of contact between WBI and participants. For the self-reported medical visits and missed appointments, a multivariate repeated measures analysis of variance was used to compare the values for the same three nominal time periods. The interview questions asked, “In the past 6 months, did you. . .?” Because interviews did not occur in precise consecutive 6-month time slots, the 6-month intervals of chart review do not correspond exactly to the 6-month intervals from the participant’s point of view. For Transportation Only, the overall differences among the means of number of charted HIV medical visits did not differ significantly (F [2, 112] ⫽ 1.823, p ⫽ .166). For the contrasts, the difference between visits before entry and first intervention period did not differ (F [1, 56] ⬍ 1). However, the contrast between the first intervention period and the second was significant (F [1, 56] ⫽ 5.196, p ⫽ .026). The means for the three periods were 1.33, 1.47, and 1.09. The Transportation Only sample showed no significant differences with respect to self-reported HIV medical visits either across all three time periods or between successive values. The three means were 2.51, 2.38, and 2.46; all three Fs were less than 1. However, with respect to self-reported missed appointments, significant differences were reported. The three means were 1.92, .72, and 1.03; the corresponding Fs were, for time, 11.534, p ⬍ .001; for the first contrast between the prior 6 months and first 6 months of intervention, 16.262, p ⬍ .001; and for the second contrast between the 6 months of first intervention period and last period, F ⫽ 1.888, p ⫽ .177. The number of missed appointments declined significantly during the major intervention period for the Transportation Only sample. Stronger results were reported for Transportation Plus. The analysis of charted HIV medical visits showed an overall F (2, 94) of 5.160, p ⫽ .007. Both
contrasts were significant: between the prior 6 months and 6 months of major intervention, the F (1, 30) ⫽ 5.668, p ⫽ .021, and between 6 months of major intervention and 6 months of transportation only, the contrast F ⫽ 9.173, p ⫽ .004. The corresponding means were 1.08, 1.60, and 1.04. These results confirm the hypothesis for this sample: when given both transportation and individualized nursing intervention, the number of HIV medical visits increased. When the nursing component was withdrawn, the number of HIV medical visits decreased. With respect to the self-reported number of HIV medical visits, the overall F (2, 60) ⫽ 4.444, p ⫽ .016. The contrast between the 6 months prior and the 6 months of major intervention was significant, F (1, 30) ⫽ 5.070, p ⫽ .032. This result reflects a significant increase in number of HIV medical visits reported. The contrast between the major intervention and the transportation follow-up period was not significant, F ⬍ 1. The corresponding three means were 1.45, 2.16, and 2.16. A similar result was reported for number of missed appointments. The overall F (2, 60) ⫽ 5.103, p ⫽ .009, with contrast between prior 6 months and 6 months of intervention resulting in an F (1, 30) ⫽ 8.521, p ⫽ .007, representing a significant decrease in number of missed appointments. The contrast between the 6 months of major intervention and transportation only follow-up was not significant, F ⬍ 1. The corresponding means were 1.68, .90, and .74. Charting the pattern of mean differences over time for the two samples provided a clear description of the kinds of changes that occurred. Figures 1, 2, and 3 show charted HIV medical visits, self-reported HIV medical visits, and self-reported missed HIV medical visits for the two samples. Three response patterns summarize the self-reported kept and missed appointments: no HIV medical visits, HIV medical visits present but missed at least one appointment, and HIV medical visits present and no appointments missed. As the percentages in Table 2 show, the number of participants improving their retention in HIV medical care increased. Using only those women with all three interviews, the Friedman analysis of variance chisquare for Transportation Only was 5.494, p ⫽ .064; for Transportation Plus, 21.171, p ⬍ .001. Thus, not only in terms of number of visits but also in terms of
Anderson et al / Retention in Care
Figure 1. Changes in mean number of HIV medical visits from chart review by study sample. NOTE: CI ⴝ confidence interval.
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Figure 3. Changes in mean number of self-reported missed HIV medical visits by study sample. NOTE: CI ⴝ confidence interval.
Discussion
Figure 2. Changes in mean number of self-reported HIV medical visits by study sample. NOTE: CI ⴝ confidence interval.
number of patients, significant impact on retention in HIV care was observed when level of intervention is designed to correspond with level of need.
Hypotheses for this study were confirmed. For an HIV-positive sample of women not using heroin and not reporting mental illness symptoms, providing transportation alone is effective in retaining them in HIV medical care. For an HIV-positive sample of women who do report current heroin use and/or mental illness symptoms, transportation plus an individualized nursing counseling outreach intervention has the effect of improving and retaining women’s attendance in HIV medical care. Nurses using the Personalized Nursing LIGHT Model of Care for the women receiving the intense intervention gathered personalized information about barriers to the receipt of routine HIV care and worked with the women to eliminate the self-identified barriers. Nurses reported that women seemed to be helped by listing barriers and concerns and then working with the nurses to approach each barrier and concern. They reported that the women’s sense of being overwhelmed by self-identified concerns and not knowing where in the community to seek help decreased over the 6-month nursing intervention. The positive effects were not always permanent. The intervention must be sustained to sustain the
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Table 2.
Patterns of Self-Report HIV Medical Visit Participation Self-Report Before Study Sample
Transportation Only
Transportation Plus
No visits Visits, but missed some Visits, none missed No visits Visits, but missed some Visits, none missed
Self-Report First 6 Months
Self-Report Second 6 Months
Count
%
Count
%
Count
%
9 39 13 15 31 5
14.8 63.9 21.3 29.4 60.8 9.8
8 12 27 3 15 19
17.0 25.5 57.4 8.1 40.5 51.4
5 14 30 3 13 22
10.2 28.6 61.2 7.9 34.2 57.9
gain. The chart review data support a gain for the women in Transportation Plus for the first 6 months after admission but show a decrease during the next 6 months. Although it was hypothesized that women in Transportation Plus needing the more intense intervention would decrease their medical visit attendance with only the offer of transportation during the second 6 months of the study, it was thought that transportation only could maintain attendance for women needing less intervention at admission. The chart review data surprisingly showed that women in Transportation Only also decreased their attendance in the last 6 months of the study. One explanation for this result and a study limitation is that during the final year of the study, budget cuts led to fewer days of available transportation. Whereas in the early days of the study there were multiple sources of funding for the transportation program, during the last year only one source of funding remained. This resulted in staff layoffs and thus fewer days that transportation was available. In an earlier study, desired behavior changes were affected by project wind-down (Andersen, Hockman, & Smereck, 1996). The results when this study was in full effect support the authors’ hypotheses at the 6-month point. The 12-month chart review results showing all clients decreased their visits may be affected by program budget cuts that affected the availability of transportation.
improve retention in HIV medical care. In this study, nurses used two pieces of self-report information (current heroin use and presence of recent mental health hospitalization or symptoms) to make the group assignment decision rather than intensive, extensive, and expensive interviewing and instrumentation often used in such intervention group assignments. The group assignment protocol described in this report can be used by outreach staff, even novices, to make optimal use of scarce resources and limited staff time and still give women the level of service needed to engage and retain them in HIV-related medical care. Women who feel downhearted or depressed or who use heroin need more outreach services to reconnect them to HIV medical care and to retain them in care. These two factors create barriers to seeking out and maintaining connection to the traditional health care community (Larson et al., 2001; Weissman et al., 1995).
Acknowledgement This research was supported by the Health Resources and Services Administration (HRSA) grant # 5 H97HA0019.
References Conclusion The results of this study show that measurement with self-report on several key questions can provide decent information on which to base clinical decisions about the level of intervention needed to
Andersen, M. D., & Hockman, E. M. (1997). Well-being and high-risk drug use among active drug users. In M. Madrid (Ed.), Patterns of Rogerian knowing (pp. 152-166). New York: National League for Nursing Press.
Anderson et al / Retention in Care Andersen, M. D., Hockman, E. M, & Smereck, G. A. D (1996). Effect of a nursing outreach intervention to drug users in Detroit, Michigan. Journal of Drug Issues, 23, 619-634. Andersen, M. D., & Smereck, G. A. D. (1989). Personalized nursing LIGHT model. Nursing Science Quarterly, 2, 120130. Andersen, M. D., & Smereck, G. A. D. (1992). The consciousness rainbow: An explication of Rogerian field pattern manifestations. Nursing Science Quarterly, 5, 120-130. Andersen, M. D., Smereck, G. A. D., & Braunstein, M. S. (1993). LIGHT model: An effective intervention model to change high-risk AIDS behaviors among hard-to-reach urban drug users. American Journal of Drug and Alcohol Abuse, 19, 309-325. Andersen, M. D., Smereck, G. A. D., Hockman, E. M., Ross, D., & Ground, K. (1999). Nurses decrease barriers to health care by “hyperlinking” multiple diagnosed women into care. Journal of the Association of Nurses in AIDS Care, 10, 27-37. Andersen, M., Tinsley, J., Milfort, D., Wilcox, R., Smereck, G., Pfoutz, S., et al. (2005). HIV health care access issues for women living with HIV, mental illness and substance abuse. AIDS Patient Care and STDs, 19, 449-459. Knowlton, A. R., Hoover, D. R., Chung, S., Celentano, D. D., Vlahov, D., & Latkin, C. A. (2001). Access to medical care and service utilization among injection drug users with HIV/ AIDS. Drug and Alcohol Dependence, 64, 55-62. Larson, T. A., Mundy, L., Bartlett, J. G., Brown, V. B., Chase, P., Cherin, D. A., et al. (2001). Finding the underserved: Directions for HIV care in the future. Home Healthcare Services Quarterly: Journal of Community Care, 1/2, 7-27. Lundgren, L., Chassler, D., Ben-Ami, L., Purington, T., & Schilling, R. (2005). Factors associated with emergency room use among injection drug users of African-American, Hispanic and White European background. American Journal on Addictions, 14, 268-280. Magnus, M., Schmidt, N., Kirkhart, K., Schieffelin, C., Fuchs, N., Brown, B., et al. (2001). Association between ancillary services and clinical and behavioral outcomes among HIVinfected women. AIDS Patient Care and STDs, 15, 137-145. Stoskoph, C. H., Yang, K. K., & Glover, S. H. (2001). Addictions services-/dual diagnosis: HIVF and mental illness, a population-based study. Community Mental Health Journal, 37, 469-479. Weissman, G., Melchoir, L. et al. (1995). Women living with substance abuse and HIV disease: Medical care access issues. Journal of the American Medical Women’s Association, 50, 115-120.
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