Improving patient retention is a key priority of HIV care.1–9 Entry and retention in HIV care are essential to receiving antiretroviral therapy (ART), which dramatically improves morbidity and mortality for patients living with HIV and reduces HIV transmission as a key component of "test-and-treat" prevention strategies.10,11 After initiation of ART, poor adherence to clinic visits is an independent predictor of virologic failure and death.8,9,11–14 Of patients linked to HIV care, approximately 11%–30% of scheduled appointments are missed7,15,16 and only 59% of patients are retained in care.17 Recent guidelines call for further research on engagement in care,18 and retention in HIV care is a major objective of the National HIV/AIDS Strategy.19
Previous work on appointment adherence has focused on patient factors as barriers to retention in care.12,15,16,20–22 A growing body of evidence suggests that the quality of patients' relationships with their HIV care providers plays an important role in appointment adherence.23–25 Some aspects of patient–provider relationships have been explored and have shown that trust in providers is associated with ART adherence26 and feeling "known as a person" by providers is associated with HIV viral suppression.27 Although these studies suggest that patient–provider relationships may generally be important, no previous study has examined the role of specific patient–provider communication and relationship factors in HIV patients' engagement in care.
To address this, we analyzed patient ratings of their HIV care providers in 5 domains: being treated with dignity and respect, being involved in decisions about their care, feeling listened to, having information explained in a way they could understand, and feeling known as a person. We hypothesized that these communication and relationship factors with providers would be associated with higher appointment adherence for patients. Ultimately, we sought to identify potential targets for future provider-focused interventions to improve their interactions with patients, promote retention in care, and help patients achieve better clinical outcomes in HIV care.
Participants and Setting
This study occurred in the context of the Johns Hopkins HIV Clinical Cohort,28 which includes adult patients living with HIV who receive outpatient care at an urban, academic clinic in Baltimore, Md. Patients in the Johns Hopkins HIV Clinical Cohort are interviewed using an audio computer-assisted self-interviewing survey instrument. Each interview is conducted privately with the patient answering questions on a computer touch screen and read aloud through a headset. Patients are interviewed while awaiting or having completed appointments with their primary HIV care providers. The study was approved by the Johns Hopkins Institutional Review Board. This current analysis included the first interview for each patient, collected from December 2004 to June 2009.
The primary outcome was patients' appointment adherence. Data were extracted from clinic records to calculate the number of completed routinely scheduled appointments divided by the total number of scheduled appointments over a period of 1 year after the audio computer-assisted self-interviewing interview. Acute appointments and appointments cancelled by the patient were not included in the measure. Calculated in this way, the proportion of completed appointments has been used to measure retention in care in previous studies.9,29
The independent variables were communication and relationship factors reported by the patients in rating their primary HIV care providers. Two questions regarding respect and involvement in decisions were adapted from the Commonwealth Fund survey.30,31 Patients were asked “Does your HIV provider treat you with (a great deal of) respect and dignity?” (A great deal, a fair amount, not too much, none at all) and “Does your HIV provider involve you in decisions about your care?” (As much as you wanted, almost as much as you wanted, less than you wanted, a lot less than you wanted). Two questions were adapted from the Consumer Assessment of Health Plans Study32: “My HIV provider explains things in a way I can understand” (never, sometimes, usually, always) and “My HIV provider listens carefully to me” (never, sometimes, usually, always). Patients were also asked 1 question assessing the global quality of the patient–provider relationship: “My HIV provider really knows me as a person” (yes, no, don’t know).27
Additional measures included patients' age, sex, self-reported racial/ethnic group, and substance use. Patients' use of ART was assessed by self-report and confirmed by review of the medical record. CD4 counts (by flow cytometry) and HIV viral loads (by the Roche Amplicor assay) within 4 weeks of the interview were also extracted from the medical record. Patients were considered to have suppressed viral loads if serum HIV-1 RNA was less than or equal to 75 copies per milliliter.
We examined the distribution of patient ratings of provider communication and relationship factors using histograms. In subsequent analyses, we dichotomized these variables as “highest rating” versus “less than highest rating” because patient responses were skewed toward the highest ratings. We assessed for collinearity using variance inflation factors and correlations among the communication and relationship variables and among the substance use variables. Collinearity was low (mean variance inflation factor 1.53); so, we retained each of these variables as separate measures.
We used t tests to compare appointment adherence by demographics, substance use, and clinical status. Using simple linear regression, we tested associations between appointment adherence and each independent variable. Next, we performed multiple linear regressions separately for each communication/relationship factor, adjusted for demographics and substance use. Finally, we included all communication/relationship factors in 1 model, adjusting for demographics and substance use. All analyses were conducted using Stata SE/11.0 (StataCorp, College Station, TX).
In total, 1363 patients were included in the study. Mean age of the patient sample was 45.8 years; the majority of patients were men (65%) and nonwhite (85%). Most nonwhite patients were African Americans (1130 patients) and were combined with the small number of other nonwhite patients (22 patients) into 1 category. Sixty-six percent of patients were on ART, and 49% had suppressed viral loads.
Table 1 shows sample characteristics and differences in appointment adherence by patient demographics, drug use, and clinical factors, calculated using t tests. For all patients in the study, the mean appointment adherence was 65%. Appointment adherence was significantly higher for patients who were men, white, and without substance use. In addition, appointment adherence was higher for patients on ART, with suppressed viral loads, and with higher CD4 counts. Table 1 also presents appointment adherence results for patients reporting the highest versus less than highest ratings of provider communication and relationship factors.
Table 2 shows the change in appointment adherence for patients reporting the highest versus less than highest ratings of provider communication and relationship factors in each of the 5 domains. For example, patients whose providers always listened carefully to them kept 7% (95% confidence interval: 2% to 11%) more of their appointments than patients whose providers usually, sometimes, or never listened carefully to them. In unadjusted analysis, appointment adherence was significantly higher for patients feeling known as persons, listened to, and treated with respect and dignity. When adjusting for patient demographics and drug use, appointment adherence was also significantly higher for patients who felt that their providers always explained things in ways they could understand. When all communication and relationship variables were included in 1 model and adjusted for demographics and substance use, feeling known as a person remained significant. Being involved in decisions was not significant in any of the models analyzed. Nineteen patients (1.4%) gave less than optimal ratings to their providers on all 5 measures. Excluding these patients from our analyses did not substantively change our findings.
This is the first study to examine associations between patients' engagement in HIV care and specific communication and relationship domains with their providers. We found that patients were more likely to keep appointments when they felt that their providers knew them as persons, always treated them with respect and dignity, always explained things in ways they could understand, and always listened carefully to them. However, being involved in decisions about their care was not associated with appointment adherence.
In our study sample, overall appointment adherence of 65% was similar to levels reported in other populations.15,16 The association that we found between higher appointment adherence and suppressed viral loads is consistent with previous work on the clinical implications of retention in care.11–14 Our study contributes new findings that after adjusting for demographics and substance use, communication and relationship factors were independent predictors of appointment adherence. This approach builds on previous qualitative study22 and work on global ratings of patient–provider relationships23 by examining specific provider behaviors of listening, explaining, and demonstrating respect that may be helpful in promoting patients' retention in care.
We had expected that patient involvement in decision making would also play a role in appointment adherence, but this was not seen. Previous work on decision-making preferences indicates that, compared with patients who prefer to share decisions, patients who prefer to make decisions alone are less likely to receive ART or to have suppressed viral loads and patients who prefer that the provider make the decisions are less likely to adhere to ART.33 Decision-making role preference may also influence appointment adherence, but our study did not stratify patients by this characteristic.
When all the communication and relationship factors were included in 1 model and adjusted for demographics and substance use, patient perception of being known as persons by their providers was the only factor significantly associated with appointment adherence. Being known as a person may be a measure of patient–provider relationship quality that encompasses the other domains examined in this study. Although collinearity among the variables was low and they seemed to represent distinct constructs, these domains are conceptually linked. Feeling known as a person can be regarded as a measure of respect from providers, who recognize the unconditional value of patients as persons.34 This respect for patients as persons may be manifested by particular provider behaviors, such as honoring patients' autonomy, listening attentively to patients' viewpoints, and explaining in ways that accurately match patients' levels of understanding.
This study has a few limitations to consider. First, the reasons why patients missed appointments were unknown. Second, this study included patients at a single, urban, academic clinic. The study sample was representative of the patient population cared for at the clinic across the measured sociodemographic characteristics.35 However, it may not be generalizable to all HIV care settings. Third, in an observational study, we must be cautious in drawing causal inferences. It is possible that associations between patients' ratings of their providers and appointment adherence are a result of negative attitudes among some patients toward health-care providers in general, rather than communication and relationship factors per se. We found, however, that all but 19 patients gave their providers the highest mark possible on at least one rating dimension and excluding these 19 patients did not change our findings. Finally, it is possible that positive ratings reflected general attitudes toward one's health-care provider rather than specific facets of communication and relationship (halo effect). However, some factors (eg, feeling known) were persistently associated with appointment adherence, whereas others (eg, being involved in decisions) were not, which suggests that our findings were driven by specific factors rather than global perceptions.
Patient–provider communication offers potential targets to improve patient engagement in HIV care and subsequent outcomes. Our study suggests that appointment adherence could be enhanced by optimizing the quality of relationships, so that patients feel known and respected as persons by their providers. In addition, specific provider communication behaviors, such as listening and explaining, could make a difference in retaining their patients in care. Further studies are needed to examine patient–provider communication and relationship factors longitudinally and enhance our understanding of how these interactions evolve over several visits and affect appointment adherence over time. Ultimately, evidence-based interventions to improve providers' communication could be tailored to target skills with known links to patient behaviors and outcomes. This approach may help address the important need for retention in HIV care, which is necessary to achieve treatment goals for individual patients and the public health goal of reducing the transmission, morbidity, and mortality of HIV.
1. Gardner LI, Marks G, Craw JA, et al.. A low-effort, clinic-wide intervention improves attendance for HIV primary care. Clin Infect Dis. 2012;55:1124–1134.
2. Samet JH, Freedberg KA, Savetsky JB, et al.. Discontinuation from HIV medical care: squandering treatment opportunities. J Health Care Poor Underserved. 2003;14:244–255.
3. Giordano T. Retention in HIV care: what the clinician needs to know. Top Antivir Med. 2011;19:12–16.
4. Mugavero M, Norton W, Saag M. Health care system and policy factors influencing engagement in HIV medical care: piecing together the fragments of a fractured health care delivery system. Clin Infect Dis. 2011;52(suppl 1):S238–S246.
5. Ulett K, Willig J, Hui-Yi L, et al.. The therapeutic implications of timely linkage and early retention in HIV care. AIDS Patient Care STDS. 2009;23:41–49.
6. Holtgrave D. On the epidemiologic and economic importance of the National AIDS Strategy for the United States. J Acquir Immune Defic Syndr. 2010;55:139–142.
7. Magnus M, Jones K, Phillips G, et al.. Characteristics associated with retention among African-American and Latino adolescent HIV-positive men: results from the outreach, care and prevention to engage HIV-seropositive young MSM of color special project of national significance initiative. J Acquir Immune Defic Syndr. 2010;53:529–536.
8. Tobias C, Cunningham WE, Cunningham CO, et al.. Making the connection: the importance of engagement and retention in HIV medical care. AIDS Patient Care STDS. 2007;21(suppl 1):S3–S8.
9. Mugavero M. Improving engagement in HIV care: what can we do? Top HIV Med. 2008;16:156–161.
10. Cohen MS, Chen YQ, McCauley M, et al.. Prevention of HIV-1 infection with early antiretroviral therapy. N Engl J Med. 2011;365:493–505.
11. Mugavero MJ, Amico KR, Westfall AO, et al.. Early retention in HIV care and viral load suppression: implications for a test and treat approach to HIV prevention. J Acquir Immune Defic Syndr. 2012;59:86–93.
12. Mugavero MJ, Lin HY, Allison JJ, et al.. Racial disparities in HIV virologic failure: do missed visits matter? J Acquir Immune Defic Syndr. 2009;50:100–108.
13. Giordano TP, Gifford AL, White AC Jr, et al.. Retention in care: a challenge to survival with HIV infection. Clin Infect Dis. 2007;44:1493–1499.
14. Park WB, Kim JY, Kim SH, et al.. Self-reported reasons among HIV-infected patients for missing clinic appointments. Int J STD AIDS. 2008;19:125–126.
15. Traeger L, O'Cleirigh C, Skeer MR, et al.. Risk factors for missed HIV primary care visits among men who have sex with men. J Behav Med. 2011;35:548–556.
16. Bofill L, Waldrop-Valverde D, Metsch L, et al.. Demographic and psychosocial factors associated with appointment attendance among HIV-positive outpatients. AIDS Care. 2011;23:1219–1225.
17. Marks G, Gardner LI, Craw J, et al.. Entry and retention in medical care among HIV-diagnosed persons: a meta-analysis. AIDS. 2010;24:2665–2678.
18. Thompson MA, Mugavero MJ, Amico KR, et al.. Guidelines for improving entry into and retention in care and antiretroviral adherence for persons with HIV: evidence-based recommendations from an International Association of Physicians in AIDS Care panel. Ann Intern Med. 2012;156:817–833.
20. Arici C, Ripamonti D, Maggiolo F, et al.. Factors associated with the failure of HIV-positive persons to return for scheduled medical visits. HIV Clin Trials. 2002;3:52–57.
21. Dietz E, Clum GA, Chung SE, et al.. Adherence to scheduled appointments among HIV-infected female youth in five U.S. cities. J Adolesc Health. 2010;46:278–283.
22. Outlaw A, Naar-King S, Green-Jones M, et al.. Brief report: predictors of optimal HIV appointment adherence in minority youth: a prospective study. J Pediatr Psychol. 2010;35:1011–1015.
23. Bodenlos JS, Grothe KB, Whitehead D, et al.. Attitudes toward health care providers and appointment attendance in HIV/AIDS patients. J Assoc Nurses AIDS Care. 2007;18:65–73.
24. Kempf MC, McLeod J, Boehme AK, et al.. A qualitative study of the barriers and facilitators to retention-in-care among HIV-positive women in the rural southeastern United States: implications for targeted interventions. AIDS Patient Care STDS. 2010;24:515–520.
25. Johnson MO, Sevelius JM, Dilworth SE, et al.. Preliminary support for the construct of health care empowerment in the context of treatment for human immunodeficiency virus. Patient Prefer Adherence. 2012;6:395–404.
26. Saha S, Jacobs EA, Moore RD, et al.. Trust in physicians and racial disparities in HIV care. AIDS Patient Care STDS. 2010;24:415–420.
27. Beach MC, Keruly J, Moore RD. Is the quality of the patient-provider relationship associated with better adherence and health outcomes for patients with HIV? J Gen Intern Med. 2006;21:661–665.
28. Moore RD. Understanding the clinical and economic outcomes of HIV therapy: the Johns Hopkins HIV clinical practice cohort. J Acquir Immune Defic Syndr Hum Retrovirol. 1998;17(suppl 1):S38–S41.
29. Mugavero MJ, Davila JA, Nevin CR, et al.. From access to engagement: measuring retention in outpatient HIV clinical care. AIDS Patient Care STDS. 2010;24:607–613.
30. Collins K, Hughes D, Doty M, et al.. Diverse Communities, Common Concerns: Assessing Health Care Quality for Minority Americans. New York, NY: The Commonwealth Fund, 2002.
31. Beach MC, Sugarman J, Johnson RL, et al.. Do patients treated with dignity report higher satisfaction, adherence, and receipt of preventive care? Ann Fam Med. 2005;3:331–338.
32. Hargraves JL, Hays RD, Cleary PD. Psychometric properties of the Consumer Assessment of Health Plans Study (CAHPS) 2.0 adult core survey. Health Serv Res. 2003;38:1509–1527.
33. Beach MC, Duggan PS, Moore RD. Is patients' preferred involvement in health decisions related to outcomes for patients with HIV? J Gen Intern Med. 2007;22:1119–1124.
34. Beach MC, Duggan PS, Cassel CK, et al.. What does 'respect' mean? Exploring the moral obligation of health professionals to respect patients. J Gen Intern Med. 2007;22:692–695.
35. Moore RD, Keruly JC, Bartlett JG. Improvement in the health of HIV-infected persons in care: reducing disparities. Clin Infect Dis. 2012;55:1242–1251.