Udeagu, Chi-Chi N. MPH; Bocour, Angelica MPH; Gale, Ilona MPH; Begier, Elizabeth M. MD, MPH
From the Bureau of HIV Prevention and Control, New York City Department of Health and Mental Hygiene, New York, New York.
The authors thank Kyle Bernstein, Charu Jain, and Tamar Renaud for their constructive feedback in developing the data collection instruments. The author also thank R. Elliott Churchill, Tracy Agerton, and Adey Tsega for their useful advice in preparing the manuscript and Christal Taylor for her administrative assistance. The authors are grateful to all the Field Services Unit staff for their dedication and hard work in implementing this initiative and their daily contribution toward reducing HIV transmission in New York City.
C.-C. N. Udeagu conceived and directed the study, assisted in drafting the data collection instruments and prepared the manuscript. A. Bocour designed first draft of the instruments, performed statistical analyses, and contributed to the revision of the manuscript. I. Gale participated in data collection, data entry, and assisted with the exploratory data analysis. E. Begier reviewed the draft documents and provided critical input and guidance.
Correspondence: Chi-Chi N. Udeagu, MPH, Director, Field Services Unit, Epidemiology and Field Services Program, Bureau of HIV/AIDS Prevention and Control NYC Department of Health and Mental Hygiene, 346 Broadway, Room 707A, CN-44, New York, New York 10013. E-mail: email@example.com.
Received for publication July 16, 2009, and accepted December 15, 2009.
Recent reports indicate that New York city (NYC) residents contract HIV infection at 3 times the national rate.1,2 Further, of 3745 individuals diagnosed with HIV infection in 2006 in NYC, 962 (26%) received concurrent HIV and AIDS diagnoses.3 Voluntary HIV partner services (PS), a process of eliciting exposed partner names from HIV-infected persons, notifying partners of their HIV exposure, and HIV testing is essential to reducing HIV transmission.4–11 Individuals who are aware of their HIV-infection reduce their risk behaviors by 50% on average, likely reducing HIV transmission to others.12
In 2004, a NYC Department of Health and Mental Hygiene (DOHMH) analysis of NYC PS data suggested that disease intervention specialists (DIS) at DOHMH sexually transmitted disease control (STD) clinics were more successful in eliciting and notifying partners than non-DOHMH providers.13 In the summer of 2006, DOHMH formed the HIV Field Services Unit (FSU), staffed with experienced DIS. The DIS were stationed at 8 large hospitals to assist providers and their HIV-infected patients with PS in areas with high rates of late HIV diagnosis and HIV-related mortality. The hospitals are all New York State designated AIDS centers: hospital-based clinics that provide comprehensive medical and support services for HIV-infected persons. A similar collaborative model has been successful in dramatically reducing NYC tuberculosis rates.14–17
Before FSU launch, NYC PS depended largely on STD clinic-based DIS. Persons diagnosed with HIV at STD clinics received PS from STD-clinic DIS. NYC community providers reported new HIV cases to DOHMH on Provider Report Forms. Known sexual and needle-sharing partners of HIV-infected persons were also referred for PS using the form. Providers and HIV-infected patients could also call the NYC contact notification assistance program (CNAP) to request PS assistance. CNAP PS requests were assigned to STD-clinic DIS for investigation. All partners residing outside of NYC were referred to other health departments for PS. After FSU establishment, DIS were also stationed at select hospitals to assist providers and HIV-diagnosed patients with PS.
To introduce the new program, DOHMH program management staff and the assigned DIS held in-person meetings with targeted hospitals' HIV medical and administrative staff. We reviewed New York State HIV PS laws and outlined DOHMH and provider responsibilities. A general operational protocol for collaboration was developed and specific steps were tailored to reflect variations in hospital settings. Initially, providers expressed concerns anecdotally about patients: (1) newly HIV-diagnosed readiness to discuss PS; (2) possibly feeling bombarded by adding persons (i.e., DIS) to already lengthy clinic processes; (3) potential confusion of providers versus DIS roles; and (4) possible confidentiality breaches during DIS investigations. Our paper presents feedback from providers, HIV-index patients, and HIV-exposed partners through a formal survey process conducted 1-year after program implementation and reports on lessons learned.
Protocol for Provider Referral and Partner Services
Providers can reach their designated DIS by calling a cellular telephone number or FSU call-line to request PS for a patient. DIS also actively sought referrals from HIV providers, e.g., counselors, physicians, nurses, and social workers. Providers referred HIV-infected patients for PS to DIS who were: (1) newly diagnosed; (2) previously diagnosed with known or suspected unnotified partners; or (3) newly diagnosed with sexually transmitted infections (STIs). DIS also reviewed laboratory reports to the NYC HIV/AIDS reporting system to ensure that all newly diagnosed at participating facilities were approached for PS.
PS included in-person DIS interview with HIV index patients for partner elicitation; efforts to locate named sexual or needle-sharing partners for notification, and to assist patients and partners with linkage to HIV medical management if needed. Index patients who accepted DOHMH-delivered PS agree on a plan (e.g., self-notification by patient, provider, and/or DOHMH-assisted or DIS-delivered anonymous notification). DIS verified patient-delivered partner notifications with named partners to ensure that notifications were delivered and facilitate their HIV testing if needed. In order to pursue partner notification or verification, DIS performed domestic violence screen with patients for each named partner and received assurance from patients that they would not suffer adverse physical or emotional effects resulting from partner notification. Notification was deferred only if potential for domestic violence against the patient was identified. The DIS worked with providers to address patients' concerns if they were reluctant to name partners even without a domestic violence concern. Efforts may include role-plays on how a patient could respond to a partner suspecting that the patient provided his or her name to DOHMH.
DIS approached patients and partners at clinic or in community (e.g., home or other prearranged site). DOHMH has strict confidentiality policies and guidelines on sharing patient information with providers and in conducting investigations. Letters and telephone calls to clients only informed recipients to contact a DIS to receive important health information. DIS conduct rigorous identity verification once meeting clients in-person to ensure that health information is being communicated to the right person.
Assessment of Provider Opinion
To assess providers' perception of DOHMH PS activities, we obtained lists of providers and their work titles from HIV clinic administrators at participating facilities. DIS distributed anonymous self-administered questionnaires to all HIV/AIDS providers with HIV testing and care-related functions (doctors, nurses, counselors, case managers and administrators) during August 2007 at clinical settings (TB, infectious disease, medical clinics).
The provider survey assessed providers' acceptance of FSU program and elicited lingering concerns providers had about patients' confidentiality and readiness to discuss PS with DIS. Specifically, providers were asked about: (1) knowledge of DOHMH PS program within their facility; (2) perceived patient and provider benefits and disadvantages of the program; and (3) recommendations for improving this approach. We asked providers close-ended questions with multiple choice answers. They indicated all answer options that applied and wrote in other opinions not listed. We provided stamped, addressed envelopes for providers to return completed questionnaires. From January to March 2008, FSU research staff visited 6 of the 8 facilities to encourage providers to complete their surveys.
Assessment of HIV Index Patient and Partner Opinions and Attitudes
After reviewing responses from the first few provider questionnaires, we observed persistent concern about newly diagnosed patient's readiness to engage in PS. Therefore, we designed 2 one-page DIS-administered questionnaires to obtain feedback directly from all HIV index patients who were approached for PS interview during January to June 2008 and from all HIV-exposed partners approached for notification during March to June of 2008. We asked patients and partners for feedback regardless of their willingness to participate in PS; reasons for declining to participate were also recorded. Questionnaires response options were based on anecdotal reports from DIS and providers on reasons that influence patients' and partners' PS acceptance. Immediately following PS patient interview or partner notification, DIS administered the questionnaire and recorded the responses including nonstandard responses. To minimize potential bias of clients giving DIS desirable feedback, DIS informed clients that DOHMH values their impartial PS process assessment and would use it to improve PS.
Review of Complaints
We examined the complaint reports received by DOHMH from providers and clients and examined the impact of complaints on the PS process.
Frequencies were calculated for patient demographics and for categorical responses to survey questions. Respondents were allowed to provide responses other than standardized ones available. These “other” responses were reviewed and grouped based on similarity. For example, 1 patient said she was overwhelmed with her diagnosis and other said he was not ready to answer questions. These 2 responses were grouped as needing more time to come to terms with their diagnosis. For patient and partner surveys, we classified available responses as positive or neutral or negative about PN before conducting the survey and used these grouping for analysis. For example, “good to talk to someone” was categorized as positive or neutral and “too personal” was categorized as negative.
Questionnaires were distributed to 211 HIV providers. By March 2008, 128 (61%) providers returned completed questionnaires. Response rates ranged from 21% to 86% across the facilities (mean = 63%); 3 facilities had response rates below >60% (21%, 36%, and 54%). Approximately 25% of respondents did not indicate their titles; therefore analysis by type (e.g., physician vs. HIV counselor) or title (e.g., administrator vs. physician) was not possible.
Ninety-three (73%) of 128 providers who responded reported knowledge of the DIS assigned to their facilities; 82 of 93 (88%) had held in-person meetings with the DIS. Overall, 77 (59%) providers had referred patients to DIS. Fifty-seven (44%) providers referred patients with confirmed HIV test results, 46 (35%) referred patients with preliminary HIV-positive test results, 12 (9%) referred patients with acute HIV infection. Fifty-four (42%) providers also requested assistance with partner notification for patients previously diagnosed with HIV and 17 (13%) referred HIV-infected patients with new STIs.
Overall, most providers found DIS's specialized skills and focus on PS beneficial to them and their patients. Many providers noted gains for clinical outcomes also from DIS's extensive outreach to locate patients in community and return them for HIV screening and evaluation as well as verification of patient-delivered partner notification. Providers also valued DOHMH anonymous partner notification, in which the HIV index patient's identity is never revealed to partners. Some were concerned about patient confusion regarding DIS and provider roles, space constraints at their clinics, too many people (provider and DIS) speaking to patients, patients' readiness to engage in PS discussion, and patient confidentiality during field investigations. Three providers did not find the program beneficial to them or their patients. These providers reported awareness of the DIS assigned to their facilities and were not from facilities with low response rates (Table 1).
Patient and Partner Opinion and Attitude
Index HIV-Positive Respondents.
From January to June 2008, DIS interviewed 544 of 598 patients referred for for PS; 492 of 544 (90%) gave feedback on the interview. Twenty-two (4%) of 598 patients refused interview; 16 of 22 (73%) gave feedback on their reasons for refusal; 32 of 598 (5%) patients were not located for interview. Most patients interviewed were non-Hispanic black or Hispanic (Table 2). Of 544 patients interviewed, 301 of 492 (61%) named partners. Twenty-five (8%) who named partners refused to proceed with DOHMH-assisted PS; 5 of 25 (20%) cited risk of domestic violence.
We received positive or neutral feedback from most patients; however, 10% and 12% of respondents thought the interviews were intrusive or lengthy (Table 3). Most patients (42%) who did not name partners reported not having information about their partners because their relationships ended long before the interview, their partners relocated, or they had anonymous sexual encounters. Nine percent of patients did not name partners for other reasons including recently moving to United States; not ready to explore PS; disbelief of HIV diagnosis; and discomfort, embarrassment, or nervousness about PS. Five individuals who declined to participate in the PS interview reported not ready to discuss their HIV status due to recent diagnosis or inability to accept their diagnosis (Table 3).
Partner Notification Respondents.
During March to June 2008, DIS approached 199 named partners with adequate information for notification or verification of patient-delivered notification. Most of the 199 partners were black (83%), sexual partners (99%), males (58%), or <40 years old (55%). Eighty-four percent (168/199) were notified; 31 of 199 (16%) declined. Eighty-three percent (139/168) and 25 of 31 (81%) partners who received or declined notifications respectively gave feedback to DIS (Table 4). Most partners who refused notification were black (56%) or male (80%). About one-fourth of partners wanted to know who named them. Over half of notified partners expressed positive or neutral feedback, including appreciation of notification or opportunity to know their HIV status. Notified partners also expressed feeling overwhelmed, concern with HIV exposure information, or knowing of their exposure to HIV before the notification (Table 4).
More than half of partner respondents who refused to receive notification reported not wanting to know or discuss purpose of the DIS visit; one-fourth knew the purpose of DIS visit but did not want to speak with DOHMH staff. Fifty-four notified partners subsequently took an HIV test and gave feedback and more than two-thirds of them expressed relief or appreciated learning their HIV status regardless of test results (HIV-positive [9%], HIV-negative [63%]). Eight (15%) respondents who tested HIV-positive expressed anger toward the person they believed infected them (Table 4).
Review of Client Complaints.
A senior program manager interviewed all complainants and other persons contributing to dispute resolution and gave complainants verbal or written feedback. During July 2006 to June 2008, 5 of 2561 (<1%) HIV-infected patients and 1 of 1235 (<1%) partners approached for PS complained. Four patients complained through their providers, 1 patient and 1 partner called the program call-line. Four clients complained about telephone calls to their residences, 1 complained about receiving a letter, and 1 patient objected to an in-person DIS visit. DIS considered clients' communication preferences when continuing PS with them. One individual withdrew his complaint after meeting with a DIS and informed the investigator that his initial complaint was due to panic about the potential nature of the health information.
We elicited feedback from HIV medical care providers, HIV-infected patients, and their HIV-exposed partners to assess acceptance or attitude toward the DOHMH program to increase access to HIV PS in NYC. We found broad provider and client acceptance of the program. Providers agreed that the principal focus and well developed PS delivery skills of the DOHMH DIS, community outreach performed to locate patients for PS or to return patients to complete initial HIV medical screening and evaluation are important factors for their patients. The community outreach extended providers' and DOHMH reach to clients beyond clinical settings and increased the likelihood that PS was delivered to individuals who may not have returned to a clinic due to limiting physical or social circumstances.
Most of the patients approached accepted DOHMH-assisted PS and did not indicate preference for self-notification as reported by other investigators.18,19 However, the relatively strong desire among the partners to know the identity of the person who named them is consistent with a prior report that most HIV-exposed partners preferred patient-delivered notification.4 Feedback from a small proportion of the partners that indicated knowledge of their HIV exposure before DIS notification is evidence of some patient-delivered notification. However, the DOHMH practice of verifying reports of patient-delivered notification is an important opportunity to assure partners' knowledge of HIV exposure and facilitate HIV testing. The majority of the partners who tested HIV-positive favored learning their HIV status despite testing positive. We conclude from this result and other reports 4,6,8,13,18–20 that provider and DOHMH-assisted PS is acceptable to patients and their partners and should be encouraged.
Primary reasons given by patients for not naming partners were not having locating information or partners residing outside United States. Some studies have discussed approaches to improve patients' recall21,22 or increase the use of nontraditional partner contact such as text messaging and e-mail notification.4 In 2008, DOHMH began using email and social network internet sites to inform named partners to contact DIS to receive “important health information.” We hope that this strategy will allow us to reach more HIV-exposed partners whose only known contact information is through the Internet.
We observed providers' concern about newly diagnosed patients' lack of readiness to discuss PS with DIS among a small number of patients. The DOHMH has guidelines to ensure that patients' participation is voluntary and convenient. In 2009, we developed a formal letter to inform providers of failed attempts to discuss PS with their patients and encourage providers to continue efforts to assess patients' readiness to accept PS during routine medical visits and seek DOHMH assistance as needed. We hope that this approach will strengthen provider and DOHMH partnership to promote rigorous and comprehensive HIV PS.
Despite favorable provider support for DOHMH-assisted PS, we found persistent concern among a small number of providers about patient confidentiality. Patients and partners did not report any actual breach of confidential information during PS, however, 6 individuals among 4000 clients approached complained about being contacted by DIS. Letters, telephone calls, and field visits by DIS are important ways to reach clients who would not have returned to clinical settings to receive PS assistance and HIV medical management due to medical or other limiting circumstances. However, this finding underscores the need for close discussion and coordination of PS between providers and DIS, and thorough review of patient medical records by the DIS to obtain accurate descriptive and locating information before embarking on field visits. The DOHMH ability to safeguard client confidentiality will promote confidence in the program's ability to receive and process confidential medical information and encourage clients' participation in DOHMH-assisted PS.
The response to our survey was significantly higher among the patients and partners than providers. Thirty-nine percent of the providers targeted did not respond to our survey and 27% who responded did not report knowledge of the DIS assigned to their facility. This provider response rate may be due to the methodologies used; whereas DIS elicited clients' feedback immediately after in-person meetings, providers mailed in their self-administered questionnaires. Also, it is well known that physicians respond at lower levels to surveys; our response rate was higher than many seen in literature.23–25 Because many provider respondents did not indicate their title, we could not identify whether the unaware respondents were physicians. Regardless, program managers will establish mechanisms to ensure that the DIS will be introduced to new providers at the participating sites. Another limitation is that clients may have been uncomfortable to giving negative feedback after DIS provided support with accessing needed care and services and addressed their concerns. This may have resulted in an artificially high proportion of clients giving positive or neutral feedback.
Our study demonstrated that DOHMH-assisted PS was acceptable to providers, patients, and partners and increased access to PS for HIV-infected patients and their HIV-exposed partners beyond clinical settings. We plan to address providers' persistent concern regarding patients' confidentiality and readiness to participate in DOHMH-assisted PS by promoting close coordination between providers and DIS and providing providers with routine quantitative and qualitative PS outcomes reports. The strong positive feedback on this initiative along with other effectiveness outcomes data supports its expansion to other HIV medical care facilities in NYC.
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