Browsing by Author "Geng E"

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Accurate dried blood spots collection in the community using non-medically trained personnel could support scaling up routine viral load testing in resource limited settings.
(2019) Sikombe K; Hantuba C; Musukuma K; Sharma A; Padian N; Holmes C; Czaicki N; Simbeza S; Somwe P; Bolton-Moore C; Sikazwe I; Geng E; Centre for Infectious Diseases Research in Zambia, Lusaka, Zambia.; Division of HIV, Infectious Diseases and Global Medicine, University of California, San Francisco, Zuckerberg San Francisco General Hospital, San Francisco, California, United States of America.; Division of Epidemiology, University of California, Berkeley, Berkeley, California, United States of America.; Center for Global Health and Quality, Georgetown University, Washington, District of Columbia, United States of America.; Division of Infectious Diseases, University of Alabama, Birmingham, Alabama, United States of America.; Division of Infectious Diseases, Johns Hopkins University School of Medicine, Baltimore, Maryland, United States of America.; CIDRZ; Centre for Infectious Disease Research in Zambia (CIDRZ)
Regular plasma HIV-RNA testing for persons living with HIV on antiretroviral therapy (ART) is now the global standard, but as many as 60% of persons in Africa today on ART do not have access to standard laboratory HIV-RNA assays. As a result, patients in Zambia often receive treatment without any means of determining true virologic failure, which poses a risk of premature switch of ART regimens and widespread HIV drug resistance. Dry blood spots (DBS) on the other hand require unskilled personnel and less complex storage supply chain so are ideal to capture viral-load results from HIV patients outside clinic settings. We assess collection of DBS in the community using non-medically trained personnel (NMP) and documented challenges. We trained 23 NMP to collect DBS from lost to follow-up (LTFU) patients in 4 rural and urban Zambian districts. We developed a phlebotomy box to transport DBS without contamination at ambient temperature and concomitant training and standard operating procedures. We evaluated this through field observations, bi-weekly meetings, reports, and staff meetings. The laboratory assessed DBS quality for testing validity. We attempted to collect DBS from 357 participants in the community. Though individual reasons for refusal from the remaining 37% were not collected, NMPs reported privacy concerns, awkward box-size which drew attention in the community and fears of undisclosed uses of samples related to witchcraft and circulating narratives about past research. Successful DBS collection was not associated with patient gender, age, time on ART, enrolment CD4, facility. DBS viral-load collection by NMP is feasible in Zambia. Our training approach and assessments of NMP not part of the health system can be extended to patients by giving them more responsibility to manage their own differentiated care groups. Concerted efforts that compare collection of DBS by NMP to those collected by skilled-medical personnel are needed.
Application of a Multistate Model to Evaluate Visit Burden and Patient Stability to Improve Sustainability of Human Immunodeficiency Virus Treatment in Zambia.
(2018-Sep-28) Roy M; Holmes C; Sikazwe I; Savory T; Mwanza MW; Bolton Moore C; Mulenga K; Czaicki N; Glidden DV; Padian N; Geng E; Division of Epidemiology, University of California Berkeley.; Division of HIV/AIDS, Infectious Diseases, and Global Medicine, University of California, San Francisco, San Francisco General Hospital.; Centre for Infectious Diseases Research in Zambia, Lusaka.; Department of Epidemiology and Biostatistics, University of California, San Francisco.; University of Alabama, Birmingham.; Johns Hopkins University School of Medicine, Baltimore, Maryland.; CIDRZ; Centre for Infectious Disease Research in Zambia (CIDRZ)
BACKGROUND: Differentiated service delivery (DSD) for human immunodeficiency virus (HIV)-infected persons who are clinically stable on antiretroviral therapy (ART) has been embraced as a solution to decrease access barriers and improve quality of care. However, successful DSD implementation is dependent on understanding the prevalence, incidence, and durability of clinical stability. METHODS: We evaluated visit data in a cohort of HIV-infected adults who made at least 1 visit between 1 March 2013 and 28 February 2015 at 56 clinics in Zambia. We described visit frequency and appointment intervals using conventional stability criteria and used a mixed-effects linear regression model to identify predictors of appointment interval. We developed a multistate model to characterize patient stability over time and calculated incidence rates for transition between states. RESULTS: Overall, 167819 patients made 3418018 post-ART initiation visits between 2004 and 2015. Fifty-four percent of visits were pharmacy refill-only visits, and 24% occurred among patients on ART for >6 months and whose current CD4 was >500 cells/mm3. Median appointment interval at clinician visits was 59 days, and time on ART and current CD4 were not strong predictors of appointment interval. Cumulative incidence of clinical stability was 66.2% at 2 years after enrollment, but transition to instability (31 events per 100 person-years) and lapses in care (41 events per100 person-years) were common. CONCLUSIONS: Current facility-based care was characterized by high visit burden due to pharmacy refills and among treatment-experienced patients. Differentiated service delivery models targeted toward stable patients need to be adaptive given that clinical stability was highly transient and lapses in care were common.
Care Continuum and Postdischarge Outcomes Among HIV-Infected Adults Admitted to the Hospital in Zambia.
(2019-Oct) Haachambwa L; Kandiwo N; Zulu PM; Rutagwera D; Geng E; Holmes CB; Sinkala E; Claassen CW; Mugavero MJ; Wa Mwanza M; Turan JM; Vinikoor MJ; Zambia National Public Health Institute, Lusaka, Zambia.; Center for Global Health and Quality, Georgetown University School of Medicine, Washington, District of Columbia.; Department of Medicine, University of Alabama at Birmingham, Birmingham, Alabama.; University Teaching Hospital HIV AIDS Programme, Lusaka, Zambia.; Johns Hopkins University, Baltimore, Maryland.; School of Public Health, University of Alabama at Birmingham, Birmingham, Alabama.; School of Medicine, University of Zambia, Lusaka, Zambia.; Department of Medicine, University of California at San Francisco, San Francisco, California.; Centre for Infectious Disease Research in Zambia, Lusaka, Zambia.; Department of Medicine, University Teaching Hospital, Lusaka, Zambia.; School of Medicine, University of Maryland at Baltimore, Baltimore, Maryland.; CIDRZ; Centre for Infectious Disease Research in Zambia (CIDRZ)
BACKGROUND: We characterized the extent of antiretroviral therapy (ART) experience and postdischarge mortality among hospitalized HIV-infected adults in Zambia. METHODS: At a central hospital with an opt-out HIV testing program, we enrolled HIV-infected adults (18+ years) admitted to internal medicine using a population-based sampling frame. Critically ill patients were excluded. Participants underwent a questionnaire regarding their HIV care history and CD4 count and viral load (VL) testing. We followed participants to 3 months after discharge. We analyzed prior awareness of HIV-positive status, antiretroviral therapy (ART) use, and VL suppression (VS; <1000 copies/mL). Using Cox proportional hazards regression, we assessed risk factors for mortality. RESULTS: Among 1283 adults, HIV status was available for 1132 (88.2%), and 762 (67.3%) were HIV-positive. In the 239 who enrolled, the median age was 36 years, 59.7% were women, and the median CD4 count was 183 cells/mm CONCLUSIONS: Most HIV-related hospitalizations and deaths may now occur among ART-experienced vs -naïve individuals in Zambia. Development and evaluation of inpatient interventions are needed to mitigate the high risk of death in the postdischarge period.
Comparison of patient exit interviews with unannounced standardised patients for assessing HIV service delivery in Zambia: a study nested within a cluster randomised trial.
(2023-Jul-05) Sikombe K; Pry JM; Mody A; Rice B; Bukankala C; Eshun-Wilson I; Mutale J; Simbeza S; Beres LK; Mukamba N; Mukumbwa-Mwenechanya M; Mwamba D; Sharma A; Wringe A; Hargreaves J; Bolton-Moore C; Holmes C; Sikazwe IT; Geng E; Center for Innovation in Global Health, Georgetown University Medical Center, Washington, District of Columbia, USA.; Department of Medicine, The University of Alabama at Birmingham, Birmingham, Alabama, USA.; Implementation Science Unit, Center for Infectious Disease Research in Zambia, Lusaka, Zambia kombatende.sikombe@cidrz.org.; Implementation Science Unit, Center for Infectious Disease Research in Zambia, Lusaka, Zambia.; Social and Behavioural Science Research Group, Center for Infectious Disease Research in Zambia, Lusaka, Zambia.; Faculty of Epidemiology and Population Health, London School of Hygiene and Tropical Medicine, London, UK.; Department of International Health, Johns Hopkins University Bloomberg School of Public Health, Baltimore, Maryland, USA.; Internal Medicine, Washington University in St Louis School of Medicine, St Louis, Missouri, USA.; Department of Public Health, Environments and Society, London School of Hygiene and Tropical Medicine Faculty of Public Health and Policy, London, UK.; CIDRZ; Centre for Infectious Disease Research in Zambia (CIDRZ)
OBJECTIVES: To compare unannounced standardised patient approach (eg, mystery clients) with typical exit interviews for assessing patient experiences in HIV care (eg, unfriendly providers, long waiting times). We hypothesise standardised patients would report more negative experiences than typical exit interviews affected by social desirability bias. SETTING: Cross-sectional surveys in 16 government-operated HIV primary care clinics in Lusaka, Zambia providing antiretroviral therapy (ART). PARTICIPANTS: 3526 participants aged ≥18 years receiving ART participated in the exit surveys between August 2019 and November 2021. INTERVENTION: Systematic sample (every n OUTCOME MEASURES: We compared patient experience among patients who received brief training prior to their care visit (explaining each patient experience construct in the exit survey, being anonymous, without manipulating behaviour) with those who did not undergo training on the survey prior to their visit. RESULTS: Among 3526 participants who participated in exit surveys, 2415 were untrained (56% female, median age 40 (IQR: 32-47)) and 1111 were trained (50% female, median age 37 (IQR: 31-45)). Compared with untrained, trained patients were more likely to report a negative care experience overall (adjusted prevalence ratio (aPR) for aggregate sum score: 1.64 (95% CI: 1.39 to 1.94)), with a greater proportion reporting feeling unwelcome by providers (aPR: 1.71 (95% CI: 1.20 to 2.44)) and witnessing providers behaving rude (aPR: 2.28 (95% CI: 1.63 to 3.19)). CONCLUSION: Trained patients were more likely to identify suboptimal care. They may have understood the items solicited better or felt empowered to be more critical. We trained existing patients, unlike studies that use 'standardised patients' drawn from outside the patient population. This low-cost strategy could improve patient-centred service delivery elsewhere. TRIAL REGISTRATION NUMBER: Assessment was nested within a parent study; www.pactr.org registered the parent study (PACTR202101847907585).
Emerging priorities for HIV service delivery.
(2020-Feb) Ford N; Geng E; Ellman T; Orrell C; Ehrenkranz P; Sikazwe I; Jahn A; Rabkin M; Ayisi Addo S; Grimsrud A; Rosen S; Zulu I; Reidy W; Lejone T; Apollo T; Holmes C; Kolling AF; Phate Lesihla R; Nguyen HH; Bakashaba B; Chitembo L; Tiriste G; Doherty M; Bygrave H; National AIDS Control Programme, Ministry of Health, Accra, Ghana.; Department HIV, World Health Organization, Addis Ababa, Ethiopia.; ICAP, Columbia University Mailman School of Public Health, New York, New York, United States of America.; Bill and Melinda Gates Foundation, Seattle, Washington, United States of America.; National AIDS Control Programme, Ministry of Health, Maseru, Lesotho.; Southern African Medical Unit, Médecins Sans Frontières, Cape Town, South Africa.; Department of Surveillance, Prevention and Control of STIs, HIV/AIDS and Viral Hepatitis, Ministry of Health, Brasilia, Brazil.; SolidarMed, Swiss Organization for Health in Africa, Butha-Buthe, Lesotho.; The AIDS Support Organization (TASO), Kampala, Uganda.; International AIDS Society, Cape Town, South Africa.; Centre for Infectious Disease Epidemiology and Research, School of Public Health and Family Medicine, Faculty of Health Sciences, University of Cape Town, South Africa.; Division of Global HIV & TB, Centers for Disease Control and Prevention, Atlanta, Georgia, United States of America.; Georgetown University, Washington, DC, United States of America.; Treatment and Care Department, Viet Nam Authority of HIV/AIDS Control, Ministry of Health, Hanoi, Vietnam.; Ministry of Health and Child Care Zimbabwe, Harare, Zimbabwe.; Ministry of Health, Lilongwe, Malawi.; Department of Medicine, Faculty of Health Sciences, Cape Town, South Africa.; Department of Global Health, Boston University School of Public Health, Boston, Massachusetts, United States of America.; Department HIV, World Health Organization Lusaka, Zambia.; Centre for Infectious Disease Research in Zambia, Lusaka, Zambia.; Department HIV & Global Hepatitis Programme, World Health Organization, Geneva, Switzerland.; Center for Dissemination and Implementation, Institute for Public Health, Washington University, St. Louis, Missouri, United States of America.; CIDRZ; Centre for Infectious Disease Research in Zambia (CIDRZ)
Nathan Ford and co-authors discuss global priorities in the provision of HIV prevention and treatment services.
Enhancing engagement in HIV care among adolescents and young adults: A focus on phone-based navigation and relationship building to address barriers in HIV care.
(2025) Adhiambo HF; Mwamba C; Lewis-Kulzer J; Iguna S; Ontuga GM; Mangale DI; Nyandieka E; Nyanga J; Opondo I; Osoro J; Montoya L; Nyagesoa E; Sang N; Akama E; Bukusi E; Abuogi L; Geng E; Kwena ZA; Research Care Training Program, Centre for Microbiology Research, Kenya Medical Research Institute, Kisumu, Kenya.; Department of Child, Family, and Population Health Nursing, University of Washington, Seattle, Washington, United States of America.; Department of Biostatistics, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, United States of America.; Department of Pediatrics, University of Colorado, Denver, Colorado, United States of America.; Department of Medicine, Washington University in St. Louis, St. Louis, Missouri, United States of America.; Department of Global Health, University of Washington, Seattle, Washington, United States of America.; Centre for Infectious Disease Research in Zambia, Lusaka, Zambia.; Department of Obstetrics, Gynecology and Reproductive Sciences, University of California San Francisco, San Francisco, California, United States of America.; CIDRZ; Centre for Infectious Disease Research in Zambia (CIDRZ)
Structural, psychological, and clinical barriers to HIV care engagement among adolescents and young adults living with HIV (AYAH) persist globally despite gains in HIV epidemic control. Phone-based peer navigation may provide critical peer support, increase delivery flexibility, and require fewer resources. Prior studies show that phone-based navigation and automated text messaging interventions improve HIV care engagement, adherence, and retention among AYAH. However, little is known about AYAH experiences utilizing electronic phone-based peer navigation and automated text messaging (E-NAV). We assessed the experiences of AYAH receiving phone-based peer navigation to address barriers to HIV care engagement and viral suppression. We purposefully selected participants randomized to E-NAV within the Adapt for Adolescents in Kisumu, Kenya, and conducted 20 in-depth interviews. Interviews were conducted by a trained qualitative researcher between October and December 2021 and explored topics such as health-seeking and care experiences, E-NAV acceptability and benefits, and the client-navigator relationship. The interviews were audio-recorded and transcribed. We then applied inductive and deductive coding, followed by thematic analysis. Overall, participants found E-NAV acceptable in regard to content and frequency-particularly the opportunity to select a preferred time for calls/text messages, including evenings and weekends. They found the tone of navigator calls and messages friendly, supporting relationship building. Further, AYAH-navigator relationships were described as fraternal, client-focused, and confidential, which supported a personal connection and trust. Reported E-NAV benefits included adherence and appointment reminders, increased knowledge about HIV care, and strategies to address HIV stigma. Electronic navigation is a promising method for youth peer navigation because it optimizes reach (both in time and space) for youth that have severe constraints on both while preserving the ability to create a rapport and a relationship with patients.
Estimated mortality on HIV treatment among active patients and patients lost to follow-up in 4 provinces of Zambia: Findings from a multistage sampling-based survey.
(2018-Jan) Holmes CB; Sikazwe I; Sikombe K; Eshun-Wilson I; Czaicki N; Beres LK; Mukamba N; Simbeza S; Bolton Moore C; Hantuba C; Mwaba P; Phiri C; Padian N; Glidden DV; Geng E; University of California, San Francisco, San Francisco, California, United States of America.; Lusaka Apex Medical University, Lusaka, Zambia.; University of California, Berkeley, Berkeley, California, United States of America.; Stellenbosch University, Cape Town, South Africa.; Ministry of Health, Government of the Republic of Zambia, Lusaka, Zambia.; Georgetown University, Washington, DC, United States of America.; Centre for Infectious Disease Research in Zambia, Lusaka, Zambia.; University of Alabama at Birmingham, Birmingham, Alabama, United States of America.; Johns Hopkins University, Baltimore, Maryland, United States of America.; CIDRZ; Centre for Infectious Disease Research in Zambia (CIDRZ)
BACKGROUND: Survival represents the single most important indicator of successful HIV treatment. Routine monitoring fails to capture most deaths. As a result, both regional assessments of the impact of HIV services and identification of hotspots for improvement efforts are limited. We sought to assess true mortality on treatment, characterize the extent under-reporting of mortality in routine health information systems in Zambia, and identify drivers of mortality across sites and over time using a multistage, regionally representative sampling approach. METHODS AND FINDINGS: We enumerated all HIV infected adults on antiretroviral therapy (ART) who visited any one of 64 facilities across 4 provinces in Zambia during the 24-month period from 1 August 2013 to 31 July 2015. We identified a probability sample of patients who were lost to follow-up through selecting facilities probability proportional to size and then a simple random sample of lost patients. Outcomes among patients lost to follow-up were incorporated into survival analysis and multivariate regression through probability weights. Of 165,464 individuals (64% female, median age 39 years (IQR 33-46), median CD4 201 cells/mm3 (IQR 111-312), the 2-year cumulative incidence of mortality increased from 1.9% (95% CI 1.7%-2.0%) to a corrected rate of 7.0% (95% CI 5.7%-8.4%) (all ART users) and from 2.1% (95% CI 1.8%-2.4%) to 8.3% (95% CI 6.1%-10.7%) (new ART users). Revised provincial mortality rates ranged from 3-9 times higher than naïve rates for new ART users and were lowest in Lusaka Province (4.6 per 100 person-years) and highest in Western Province (8.7 per 100 person-years) after correction. Corrected mortality rates varied markedly by clinic, with an IQR of 3.5 to 7.5 deaths per 100 person-years and a high of 13.4 deaths per 100 person-years among new ART users, even after adjustment for clinical (e.g., pretherapy CD4) and contextual (e.g., province and clinic size) factors. Mortality rates (all ART users) were highest year 1 after treatment at 4.6/100 person-years (95% CI 3.9-5.5), 2.9/100 person-years (95% CI 2.1-3.9) in year 2, and approximately 1.6% per year through 8 years on treatment. In multivariate analysis, patient-level factors including male sex and pretherapy CD4 levels and WHO stage were associated with higher mortality among new ART users, while male sex and HIV disclosure were associated with mortality among all ART users. In both cases, being late (>14 days late for appointment) or lost (>90 days late for an appointment) was associated with deaths. We were unable to ascertain the vital status of about one-quarter of those lost and selected for tracing and did not adjudicate causes of death. CONCLUSIONS: HIV treatment in Zambia is not optimally effective. The high and sustained mortality rates and marked under-reporting of mortality at the provincial-level and unexplained heterogeneity between regions and sites suggest opportunities for the use of corrected mortality rates for quality improvement. A regionally representative sampling-based approach can bring gaps and opportunities for programs into clear epidemiological focus for local and global decision makers.
How can Africa sustain its HIV response amid US aid cuts?
(2025-Mar-20) Mutale W; Semeere A; Bukusi EA; Ojji D; Venter F; Odeny T; Chilengi R; Mosepele M; Geng E; Sikazwe I; Bosomprah S; Mulenga L; Simitala F; Department of Medicine, Washington University in St Louis, St Louis, MO, USA.; Zambian National Public Health Institute, Lusaka, Zambia; Center for Infectious Disease Research in Zambia (CIDRZ), Lusaka, Zambia.; Center for Microbiology Research, KEMRI, Nairobi, Kenya; Division of Oncology, Washington University, St Louis, MO, USA.; Department of Health Policy and Management, School of Public Health, University of Zambia, Lusaka 10101, Zambia; Southern Africa Institute for Collaborative Research and Innovation Organisation (SAICRIO), Lusaka, Zambia. Electronic address: wmutale@yahoo.com.; University of Botswana, Gaborone, Botswana.; Department of Medicine and Makerere University Joint AIDS Program, Makerere University, Kampala, Uganda.; University of the Witwatersrand, Johannesburg, South Africa.; Center for Infectious Disease Research in Zambia (CIDRZ), Lusaka, Zambia.; Ministry of Health, Lusaka, Zambia.; Infectious Diseases Institute, College of Health Sciences, Makerere University, Kampala, Uganda.; Center for Microbiology Research, KEMRI, Nairobi, Kenya.; Department of Internal Medicine, Faculty of Clinical Sciences, College of Health Sciences, University of Abuja, Abuja, Nigeria.
Human-Centered Design Lessons for Implementation Science: Improving the Implementation of a Patient-Centered Care Intervention.
(2019-Dec) Beres LK; Simbeza S; Holmes CB; Mwamba C; Mukamba N; Sharma A; Munamunungu V; Mwachande M; Sikombe K; Bolton Moore C; Mody A; Koyuncu A; Christopoulos K; Jere L; Pry J; Ehrenkranz PD; Budden A; Geng E; Sikazwe I; Georgetown University, Washington, DC.; Department of Interna6onal Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD.; University of California San Francisco, San Francisco, CA.; D'EVA Consulting, Washington, DC.; The Bill & Melinda Gates Foundation, Seattle, WA.; Centre for Infectious Disease Research in Zambia, Lusaka, Zambia.; CIDRZ; Centre for Infectious Disease Research in Zambia (CIDRZ)
BACKGROUND: Evidence-based HIV interventions often fail to reach anticipated impact due to insufficient utilization in real-world health systems. Human-centered design (HCD) represents a novel approach in tailoring innovations to fit end-users, narrowing the gap between efficacious interventions and impact at scale. METHODS: We combined a narrative literature review of HCD in HIV programs with our experience using HCD to redesign an intervention promoting patient-centered care (PCC) practices among health care workers (HCW) in Zambia. We summarize the use and results of HCD in the global HIV response and share case study insights to advance conceptualization of HCD applications. RESULTS: The literature review identified 13 articles (representing 7 studies) on the use of HCD in HIV. All studies featured HCD hallmarks including empathy development, user-driven inquiry, ideation, and iterative refinement. HCD was applied to mHealth design, a management intervention and pre-exposure prophylaxis delivery. Our HCD application addressed a behavioral service delivery target: changing HCW patient-centered beliefs, attitudes, and practices. Through in-depth developer-user interaction, our HCD approach revealed specific HCW support for and resistance to PCC, suggesting intervention revisions to improve feasibility and acceptability and PCC considerations that could inform implementation in transferable settings. CONCLUSIONS: As both a research and implementation tool, HCD has potential to improve effective implementation of the HIV response, particularly for product development; new intervention introduction; and complex system interventions. Further research on HCD application strengths and limitations is needed. Those promoting PCC may improve implementation success by seeking out resonance and anticipating the challenges our HCD process identified.
'I need time to start antiretroviral therapy': understanding reasons for delayed ART initiation among people diagnosed with HIV in Lusaka, Zambia'.
(2022-Dec) Mwamba C; Beres LK; Topp SM; Mukamba N; Simbeza S; Sikombe K; Mody A; Geng E; Holmes CB; Kennedy CE; Sikazwe I; Denison JA; Bolton Moore C; Department of International Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.; Georgetown University, Washington, DC, USA.; Washington University School of Medicine in St. Louis, MO, USA.; Department of Public Health Environments and Society, Faculty of Public Health and Policy, London School of Hygiene and Tropical Medicine, London, United Kingdom.; Centre for Infectious Disease Research in Zambia, Lusaka, Zambia.; College of Public Health, Medical & Veterinary Sciences, James Cook University, Townsville, Australia.; CIDRZ; Centre for Infectious Disease Research in Zambia (CIDRZ)
INTRODUCTION: Rapid antiretroviral therapy (ART) initiation can improve patient outcomes such as viral suppression and prevent new infections. However, not everyone who can start ART does so immediately. METHODS: We conducted a qualitative study to inform interventions supporting rapid initiation in the 'Test and Start' era. We purposively sampled 20 adult patients living with HIV and a previous gap in care from ten health facilities in Lusaka, Zambia for interviews. We inductively analysed transcripts using a thematic, narrative approach. In their narratives, seven participants discussed delaying ART initiation. RESULTS: Drawing on messages gleaned from facility-based counselling and community information, many cited greater fear of rapid sickness or death due to imperfect adherence or treatment side effects than negative health consequences due to delayed initiation. Participants described needing time to 'prepare' their minds for a lifetime treatment commitment. Concerns about inadvertent HIV status disclosure during drug collection discouraged immediate initiation, as did feeling healthy, and worries about the impact of ART initiation on relationship dynamics. CONCLUSION: Findings suggest that counselling messages should accurately communicate treatment risks, without perpetuating fear-based narratives about HIV. Identifying and managing patient-specific concerns and reasons for the 'need for time' may be important for supporting individuals to rapidly accept lifelong treatment.Key messagesFear-based adherence messaging in health facilities about the dangers of missing a treatment dose or changing the time when ART is taken contributes to Zambian patients' refusals of immediate ART initiationResponsive health systems that balance a stated need for time to accept one's diagnosis and prepare to embark on a lifelong treatment plan with interventions to identify and manage patient-specific treatment related fears and concerns may support more rapid ART initiationPerceived social stigma around HIV continues to be a significant challenge for treatment initiation.
Improved Retention With 6-Month Clinic Return Intervals for Stable Human Immunodeficiency Virus-Infected Patients in Zambia.
(2018-Jan-06) Mody A; Roy M; Sikombe K; Savory T; Holmes C; Bolton-Moore C; Padian N; Sikazwe I; Geng E; Centre for Infectious Diseases Research in Zambia, Lusaka, Zambia.; Division of HIV, ID, and Global Medicine, University of California, San Francisco and Zuckerberg San Francisco General Hospital.; Division of Infectious Diseases, Johns Hopkins University School of Medicine, Baltimore, Maryland.; Division of Infectious Diseases, University of Alabama, Birmingham.; Division of Epidemiology, University of California, Berkeley.; CIDRZ; Centre for Infectious Disease Research in Zambia (CIDRZ)
BACKGROUND: Extending appointment intervals for stable HIV-infected patients in sub-Saharan Africa can reduce patient opportunity costs and decongest overcrowded facilities. METHODS: We analyzed a cohort of stable HIV-infected adults (on treatment with CD4 >200 cells/μL for more than 6 months) who presented for clinic visits in Lusaka, Zambia. We used multilevel, mixed-effects logistic regression adjusting for patient characteristics, including prior retention, to assess the association between scheduled appointment intervals and subsequent missed visits (>14 days late to next visit), gaps in medication (>14 days late to next pharmacy refill), and loss to follow-up (LTFU; >90 days late to next visit). RESULTS: A total of 62084 patients (66.6% female, median age 38, median CD4 438 cells/μL) made 501281 visits while stable on antiretroviral therapy. Most visits were scheduled around 1-month (25.0% clinical, 44.4% pharmacy) or 3-month intervals (49.8% clinical, 35.2% pharmacy), with fewer patients scheduled at 6-month intervals (10.3% clinical, 0.4% pharmacy). After adjustment and compared to patients scheduled to return in 1 month, patients with six-month clinic return intervals were the least likely to miss visits (adjusted odds ratio [aOR], 0.20; 95% confidence interval [CI], 0.17-0.24); miss medication pickups (aOR, 0.47; 95% CI 0.39-0.57), and become LTFU prior to the next visit (aOR, 0.41; 95% CI, 0.31-0.54). CONCLUSIONS: Six-month clinic return intervals were associated with decreased lateness, gaps in medication, and LTFU in stable HIV-infected patients and may represent a promising strategy to reduce patient burdens and decongest clinics.
Participation in adherence clubs and on-time drug pickup among HIV-infected adults in Zambia: A matched-pair cluster randomized trial.
(2020-Jul) Roy M; Bolton-Moore C; Sikazwe I; Mukumbwa-Mwenechanya M; Efronson E; Mwamba C; Somwe P; Kalunkumya E; Lumpa M; Sharma A; Pry J; Mutale W; Ehrenkranz P; Glidden DV; Padian N; Topp S; Geng E; Holmes CB; University of California, Davis, Davis, California, United States of America.; University of California, Berkeley, Berkeley, California, United States of America.; University of Alabama, Tuscaloosa, Alabama, United States of America.; Bill and Melinda Gates Foundation, Seattle, Washington, United States of America.; James Cook University, Townsville, Queensland, Australia.; Centre for Infectious Disease Research in Zambia, Lusaka, Zambia.; University of California, San Francisco, San Fancisco, California, United States of America.; Johns Hopkins University, Baltimore, Maryland, United States of America.; Center for Global Health Practice and Impact, Georgetown University School of Medicine, Washington, District of Columbia, United States of America.; CIDRZ; Centre for Infectious Disease Research in Zambia (CIDRZ)
BACKGROUND: Current models of HIV service delivery, with frequent facility visits, have led to facility congestion, patient and healthcare provider dissatisfaction, and suboptimal quality of services and retention in care. The Zambian urban adherence club (AC) is a health service innovation designed to improve on-time drug pickup and retention in HIV care through off-hours facility access and pharmacist-led group drug distribution. Similar models of differentiated service delivery (DSD) have shown promise in South Africa, but observational analyses of these models are prone to bias and confounding. We sought to evaluate the effectiveness and implementation of ACs in Zambia using a more rigorous study design. METHODS AND FINDINGS: Using a matched-pair cluster randomized study design (ClinicalTrials.gov: NCT02776254), 10 clinics were randomized to intervention (5 clinics) or control (5 clinics). At each clinic, between May 19 and October 27, 2016, a systematic random sample was assessed for eligibility (HIV+, age ≥ 14 years, on ART >6 months, not acutely ill, CD4 count not <200 cells/mm3) and willingness to participate in an AC. Clinical and antiretroviral drug pickup data were obtained through the existing electronic medical record. AC meeting attendance data were collected at intervention facilities prospectively through October 28, 2017. The primary outcome was time to first late drug pickup (>7 days late). Intervention effect was estimated using unadjusted Kaplan-Meier survival curves and a Cox proportional hazards model to derive an adjusted hazard ratio (aHR). Medication possession ratio (MPR) and implementation outcomes (adoption, acceptability, appropriateness, feasibility, and fidelity) were additionally evaluated as secondary outcomes. Baseline characteristics were similar between 571 intervention and 489 control participants with respect to median age (42 versus 41 years), sex (62% versus 66% female), median time since ART initiation (4.8 versus 5.0 years), median CD4 count at study enrollment (506 versus 533 cells/mm3), and baseline retention (53% versus 55% with at least 1 late drug pickup in previous 12 months). The rate of late drug pickup was lower in intervention participants compared to control participants (aHR 0.26, 95% CI 0.15-0.45, p < 0.001). Median MPR was 100% in intervention participants compared to 96% in control participants (p < 0.001). Although 18% (683/3,734) of AC group meeting visits were missed, on-time drug pickup (within 7 days) still occurred in 51% (350/683) of these missed visits through alternate means (use of buddy pickup or early return to the facility). Qualitative evaluation suggests that the intervention was acceptable to both patients and providers. While patients embraced the convenience and patient-centeredness of the model, preference for traditional adherence counseling and need for greater human resources influenced intervention appropriateness and feasibility from the provider perspective. The main limitations of this study were the small number of clusters, lack of viral load data, and relatively short follow-up period. CONCLUSIONS: ACs were found to be an effective model of service delivery for reducing late ART drug pickup among HIV-infected adults in Zambia. Drug pickup outside of group meetings was relatively common and underscores the need for DSD models to be flexible and patient-centered if they are to be effective. TRIAL REGISTRATION: ClinicalTrials.gov NCT02776254.
Patients' Satisfaction with HIV Care Providers in Public Health Facilities in Lusaka: A Study of Patients who were Lost-to-Follow-Up from HIV Care and Treatment.
(2020-Apr) Mukamba N; Chilyabanyama ON; Beres LK; Simbeza S; Sikombe K; Padian N; Holmes C; Sikazwe I; Geng E; Schwartz SR; Division of HIV, ID and Global Medicine, University of California, San Francisco, Zuckerberg San Francisco General Hospital, San Francisco, CA, USA.; Department of Epidemiology, Johns Hopkins School of Public Health, Baltimore, MD, USA. sschwartz@jhu.edu.; Centre for Infectious Disease Research in Zambia, Lusaka, Zambia. njekwa.mukamba@gmail.com.; Centre for Global Health and Quality, Georgetown University Medical Center, Washington, DC, USA.; Department of International Health, Johns Hopkins School of Public Health, Baltimore, MD, USA.; Division of Infectious Diseases, Johns Hopkins University School of Medicine, Baltimore, MD, USA.; Division of Epidemiology, University of California, Berkeley, Berkeley, CA, USA.; Centre for Infectious Disease Research in Zambia, Lusaka, Zambia.; CIDRZ; Centre for Infectious Disease Research in Zambia (CIDRZ)
Prognosis among those who are HIV infected has improved but long-term retention is challenging. Health systems may benefit from routinely measuring patient satisfaction which is a potential driver of engagement in HIV care, but it is not often measured in Africa, and Zambia in particular. This study aims to internally validate a patient satisfaction tool, assess satisfaction among patients previously lost-to-follow up (LTFU) from HIV care in Lusaka province and to measure association between patient satisfaction with their original clinic and re-engagement in HIV care. A cross-sectional assessment of satisfaction was conducted by tracing sampled patients drawn from public health facilities. Our findings suggest that satisfaction tool, previously validated in USA, exhibits high internal consistency for measuring patient satisfaction in the Zambian health system. Patient satisfaction with healthcare providers is associated with re-engagement in HIV care. Future interventions on patient-centred care are likely to optimize and support retention in care.
Patterns and Predictors of Incident Return to HIV Care Among Traced, Disengaged Patients in Zambia: Analysis of a Prospective Cohort.
(2021-Mar-01) Beres LK; Schwartz S; Simbeza S; McGready J; Eshun-Wilson I; Mwamba C; Sikombe K; Topp SM; Somwe P; Mody A; Mukamba N; Ehrenkranz PD; Padian N; Pry J; Moore CB; Holmes CB; Sikazwe I; Denison JA; Geng E; Department of Biostatistics, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD.; Department of Medicine, Georgetown University, Washington, DC.; The Bill & Melinda Gates Foundation, Seattle, WA.; Division of Infectious Diseases, University of Alabama at Birmingham, Birmingham, AL.; Division of Epidemiology, University of California Berkeley, Berkeley, CA; and.; Division of Infectious Diseases, Washington University School of Medicine, University of Washington, St. Louis, St. Louis, MO.; College of Public Health, Medical and Veterinary Sciences, James Cook University, Townsville, Australia.; Centre for Infectious Disease Research in Zambia, Lusaka, Zambia.; Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD.; Department of International Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD.; CIDRZ; Centre for Infectious Disease Research in Zambia (CIDRZ)
BACKGROUND: Dynamic movement of patients in and out of HIV care is prevalent, but there is limited information on patterns of patient re-engagement or predictors of return to guide HIV programs to better support patient engagement. METHODS: From a probability-based sample of lost to follow-up, adult patients traced by peer educators from 31 Zambian health facilities, we prospectively followed disengaged HIV patients for return clinic visits. We estimated the cumulative incidence of return and the time to return using Kaplan-Meier methods. We used univariate and multivariable Cox proportional hazards regression to conduct a risk factor analysis identifying predictors of incident return across a social ecological framework. RESULTS: Of the 556 disengaged patients, 73.0% [95% confidence interval (CI): 61.0 to 83.8] returned to HIV care. The median follow-up time from disengagement was 32.3 months (interquartile range: 23.6-38.9). The rate of return decreased with time postdisengagement. Independent predictors of incident return included a previous gap in care [adjusted Hazard Ratio (aHR): 1.95, 95% CI: 1.23 to 3.09] and confronting a stigmatizer once in the past year (aHR: 2.14, 95% CI: 1.25 to 3.65). Compared with a rural facility, patients were less likely to return if they sought care from an urban facility (aHR: 0.68, 95% CI: 0.48 to 0.96) or hospital (aHR: 0.52, 95% CI: 0.33 to 0.82). CONCLUSIONS: Interventions are needed to hasten re-engagement in HIV care. Early and differential interventions by time since disengagement may improve intervention effectiveness. Patients in urban and tertiary care settings may need additional support. Improving patient resilience, outreach after a care gap, and community stigma reduction may facilitate return. Future re-engagement research should include causal evaluation of identified factors.
Programme science methodologies and practices that address "FURRIE" challenges: examples from the field.
(2024-Jul) Hargreaves JR; Baptiste S; Bhattacharjee P; Cowan FM; Herce ME; Lauer K; Sikazwe I; Geng E; Faculty of Public Health and Policy, London School of Hygiene & Tropical Medicine, London, UK.; Liverpool School of Tropical Medicine, Liverpool, UK.; Institute for Global Health and Infectious Diseases, University of North Carolina, Chapel Hill, USA.; International Treatment Preparedness Coalition, Johannesburg, South Africa.; CIDRZ, Lusaka, Zambia.; Institute for Global Public Health, University of Manitoba, Winnipeg, Manitoba, Canada.; Partners for Health and Development in Africa, Nairobi, Kenya.; Division of Infectious Diseases and Center for Dissemination and Implementation, Washington University in St. Lous, St. Louis, Missouri, USA.; CeSHHAR, Harare, Zimbabwe.
INTRODUCTION: "Programme science" deploys scientific methods to address questions that are a priority to support the impact of public health programmes. As such, programme science responds to the challenges of making such studies: (1) feasible to undertake, (2) useful, (3) rigorous, (4) real-world-relevant, (5) informative, and undertaken by (6) equitable partnerships. The acronym "FURRIE" is proposed to describe this set of six challenges. This paper discusses selected HIV/STI (sexually transmitted infection) programme science case studies to illustrate how programme science rises to the FURRIE challenges. DISCUSSION: One way in which programme science is made more feasible is through the analysis and interpretation of data collected through service delivery. For some questions, these data can be augmented through methods that reach potential clients of services who have not accessed services or been lost to follow-up. Process evaluation can enhance the usefulness of programme science by studying implementation processes, programme-client interactions and contextual factors. Ensuring rigour by limiting bias and confounding in the real-world context of programme science studies requires methodological innovation. Striving for scientific rigour can also have the unintended consequence of creating a gap between what happens in a study, and what happens in the "real-world." Community-led monitoring is one approach to grounding data collection in the real-world experience of clients. Evaluating complex, context-specific strategies to strengthen health outcomes in a way that is informative for other settings requires clear specification of the intervention packages that are planned and delivered in practice. Programme science provides a model for equitable partnership through co-leadership between programmes, researchers and the communities they serve. CONCLUSIONS: Programme science addresses the FURRIE challenges, thereby improving programme impact and ultimately health outcomes and health equity. The adoption and adaptation of the types of novel programme science approaches showcased here should be promoted within and beyond the HIV/STI field.
"Provider discretionary power practices to support implementation of patient-centered HIV care in Lusaka, Zambia".
(2022) Mwamba C; Mukamba N; Sharma A; Lumbo K; Foloko M; Nyirenda H; Simbeza S; Sikombe K; Holmes CB; Sikazwe I; Moore CB; Mody A; Geng E; Beres LK; Department of International Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, United States.; Department of Public Health Environments and Society, London School of Hygiene & Tropical Medicine, London, United Kingdom.; Department of Medicine, Georgetown University Medical Centre, Georgetown University, Washington, DC, United States.; Centre for Infectious Disease Research in Zambia, Lusaka, Zambia.; Washington University School of Medicine, St. Louis, MO, United States.; CIDRZ; Centre for Infectious Disease Research in Zambia (CIDRZ)
INTRODUCTION: Traditional patient-provider relationships privilege the providers, as they possess the formal authority and clinical knowledge applied to address illness, but providers also have discretion over how they exercise their power to influence patients' services, benefits, and sanctions. In this study, we assessed providers' exercise of discretionary power in implementing patient-centered care (PCC) practices in Lusaka, Zambia. METHODS: HIV clinical encounters between patients on antiretroviral therapy (ART) and providers across 24 public health facilities in Lusaka Province were audio recorded and transcribed verbatim. Using qualitative content analysis, we identified practices of discretionary power (DP) employed in the implementation of PCC and instances of withholding DP. A codebook of DP practices was inductively and iteratively developed. We compared outcomes across provider cadres and within sites over time. RESULTS: We captured 194 patient-provider interactions at 24 study sites involving 11 Medical Officers, 58 Clinical Officers and 10 Nurses between August 2019 to May 2021. Median interaction length was 7.5 min. In a hierarchy where providers dominate patients and interactions are rapid, some providers invited patients to ask questions and responded at length with information that could increase patient understanding and agency. Others used inclusive language, welcomed patients, conducted introductions, and apologized for delayed services, narrowing the hierarchical distance between patient and provider, and facilitating recognition of the patient as a partner in care. Although less common, providers shared their decision-making powers, allowing patients to choose appointment dates and influence regimens. They also facilitated resource access, including access to services and providers outside of scheduled appointment times. Application of DP was not universal and missed opportunities were identified. CONCLUSION: Supporting providers to recognize their power and intentionally share it is both inherent to the practice of PCC (e.g., making a patient a partner), and a way to implement improved patient support. More research is needed to understand the application of DP practices in improving the patient-centeredness of care in non-ART settings.
Redefining and revisiting cost estimates of routine ART care in Zambia: an analysis of ten clinics.
(2020-Feb) Tucker A; Tembo T; Tampi RP; Mutale J; Mukumba-Mwenechanya M; Sharma A; Dowdy DW; Moore CB; Geng E; Holmes CB; Sikazwe I; Sohn H; Center for Dissemination and Implementation, Institute for Public Health at Washington University in St. Louis, St. Louis, MO, USA.; Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.; Department of Internal Medicine, Washington University School of Medicine in St. Louis, St. Louis, MO, USA.; Johns Hopkins University School of Medicine, Baltimore, MD, USA.; University of Alabama, Birmingham, AL, USA.; Georgetown University School of Medicine, Washington, DC, USA.; Center for Infectious Disease Research (CIDRZ), Lusaka, Zambia.
INTRODUCTION: Accurate costing is key for programme planning and policy implementation. Since 2011, there have been major changes in eligibility criteria and treatment regimens with price reductions in ART drugs, programmatic changes resulting in clinical task-shifting and decentralization of ART delivery to peripheral health centres making existing evidence on ART care costs in Zambia out-of-date. As decision makers consider further changes in ART service delivery, it is important to understand the current drivers of costs for ART care. This study provides updates on costs of ART services for HIV-positive patients in Zambia. METHODS: We evaluated costs, assessed from the health systems perspective and expressed in 2016 USD, based on an activity-based costing framework using both top-down and bottom-up methods with an assessment of process and capacity. We collected primary site-level costs and resource utilization data from government documents, patient chart reviews and time-and-motion studies conducted in 10 purposively selected ART clinics. RESULTS: The cost of providing ART varied considerably among the ten clinics. The average per-patient annual cost of ART service was $116.69 (range: $59.38 to $145.62) using a bottom-up method and $130.32 (range: $94.02 to $162.64) using a top-down method. ART drug costs were the main cost driver (67% to 7% of all costs) and are highly sensitive to the types of patient included in the analysis (long-term vs. all ART patients, including those recently initiated) and the data sources used (facility vs. patient level). Missing capacity costs made up 57% of the total difference between the top-down and bottom-up estimates. Variability in cost across the ten clinics was associated with operational characteristics. CONCLUSIONS: Real-world costs of current routine ART services in Zambia are considerably lower than previously reported estimates and sensitive to operational factors and methods used. We recommend collection and monitoring of resource use and capacity data to periodically update cost estimates.
Retention and viral suppression in a cohort of HIV patients on antiretroviral therapy in Zambia: Regionally representative estimates using a multistage-sampling-based approach.
(2019-May) Sikazwe I; Eshun-Wilson I; Sikombe K; Czaicki N; Somwe P; Mody A; Simbeza S; Glidden DV; Chizema E; Mulenga LB; Padian N; Duncombe CJ; Bolton-Moore C; Beres LK; Holmes CB; Geng E; University of California, San Francisco, San Francisco, California, United States of America.; Georgetown University, Washington, District of Columbia, United States of America.; International Association of Providers of AIDS Care, Washington, District of Columbia, United States of America.; University of California, Berkeley, Berkeley, California, United States of America.; Ministry of Health, Lusaka, Zambia.; Centre for Infectious Disease Research in Zambia, Lusaka, Zambia.; University of Alabama at Birmingham, Birmingham, Alabama, United States of America.; Johns Hopkins University, Baltimore, Maryland, United States of America.; CIDRZ; Centre for Infectious Disease Research in Zambia (CIDRZ)
BACKGROUND: Although the success of HIV treatment programs depends on retention and viral suppression, routine program monitoring of these outcomes may be incomplete. We used data from the national electronic medical record (EMR) system in Zambia to enumerate a large and regionally representative cohort of patients on treatment. We traced a random sample with unknown outcomes (lost to follow-up) to document true care status and HIV RNA levels. METHODS AND FINDINGS: On 31 July 2015, we selected facilities from 4 provinces in 12 joint strata defined by facility type and province with probability proportional to size. In each facility, we enumerated adults with at least 1 clinical encounter after treatment initiation in the previous 24 months. From this cohort, we identified lost-to-follow-up patients (defined as 90 or more days late for their last appointment), selected a random sample, and intensively reviewed their records and traced them via phone calls and in-person visits in the community. In 1 of 4 provinces, we also collected dried blood spots (DBSs) for plasma HIV RNA testing. We used inverse probability weights to incorporate sampling outcomes into Aalen-Johansen and Cox proportional hazards regression to estimate retention and viremia. We used a bias analysis approach to correct for the known inaccuracy of plasma HIV RNA levels obtained from DBSs. From a total of 64 facilities with 165,464 adults on ART, we selected 32 facilities with 104,966 patients, of whom 17,602 (17%) were lost to follow-up: Those lost to follow-up had median age 36 years, 60% were female (N = 11,241), they had median enrollment CD4 count of 220 cells/μl, and 38% had WHO stage 1 clinical disease (N = 10,690). We traced 2,892 (16%) and found updated outcomes for 2,163 (75%): 412 (19%) had died, 836 (39%) were alive and in care at their original clinic, 457 (21%) had transferred to a new clinic, 255 (12%) were alive and out of care, and 203 (9%) were alive but we were unable to determine care status. Estimates using data from the EMR only suggested that 42.7% (95% CI 38.0%-47.1%) of new ART starters and 72.3% (95% CI 71.8%-73.0%) of all ART users were retained at 2 years. After incorporating updated data through tracing, we found that 77.3% (95% CI 70.5%-84.0%) of new initiates and 91.2% (95% CI 90.5%-91.8%) of all ART users were retained (at original clinic or transferred), indicating that routine program data underestimated retention in care markedly. In Lusaka Province, HIV RNA levels greater than or equal to 1,000 copies/ml were present in 18.1% (95% CI 14.0%-22.3%) of patients in care, 71.3% (95% CI 58.2%-84.4%) of lost patients, and 24.7% (95% CI 21.0%-29.3%). The main study limitations were imperfect response rates and the use of self-reported care status. CONCLUSIONS: In this region of Zambia, routine program data underestimated retention, and the point prevalence of unsuppressed HIV RNA was high when lost patients were accounted for. Viremia was prevalent among patients who unofficially transferred: Sustained engagement remains a challenge among HIV patients in Zambia, and targeted sampling is an effective strategy to identify such gaps in the care cascade and monitor programmatic progress.
Rethinking retention: Mapping interactions between multiple factors that influence long-term engagement in HIV care.
(2018) Topp SM; Mwamba C; Sharma A; Mukamba N; Beres LK; Geng E; Holmes CB; Sikazwe I; School of Medicine, University of San Francisco, San Francisco, California, United States of America.; Centre for Infectious Disease Research in Zambia, Lusaka, Zambia.; College of Public Health Medical and Veterinary Sciences, James Cook University, Townsville, Australia.; Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, United States of America.; CIDRZ; Centre for Infectious Disease Research in Zambia (CIDRZ)
BACKGROUND: Failure to keep people living with HIV engaged in life-long care and treatment has serious implications for individual and population-level health. Nested within a four-province study of HIV care and treatment outcomes, we explored the dynamic role of social and service-related factors influencing retention in HIV care in Zambia. METHODS: From a stratified random sample of 31 facilities, eight clinics were selected, one urban and one rural from each province. Across these sites we conducted a total of 69 in-depth interviews, including with patients (including pregnant women) engaged in-care (n = 28), disengaged from care (n = 15), engaged facility transferee (n = 12), and friends/family of deceased patients (n = 14). At the same sites we conducted 24 focus group discussions with a total of 192 lay and professional healthcare workers (HCWs). Two-day observations in each of the eight facilities helped triangulate data on operational context, provider relations and patient-provider interactions. We ordered and analysed data using an adapted version of Ewart's Social Action Theory. RESULTS: Three overarching findings emerged. First, the experience of living with HIV and engaging in HIV care in Zambia is a social, not individual experience, influenced by social and gendered norms and life goals including financial stability, raising family and living stigma-free. Second, patients and their networks act collectively to negotiate and navigate HIV care. Anticipated responses from social network influenced patients' willingness to engage in care, while emotional and material support from those networks influenced individuals' capacity to remain in HIV care. Lastly, health system factors were most influential where they facilitated or undermined peoples' collective approach to health service use. Participants living with HIV reported facilitation of both their initial and continued engagement in care where services involved social networks, such as during couples testing and community outreach. Conversely, service features that were poorly aligned with respondents' social reality (e.g. workplace obligations) hindered long-term engagement. CONCLUSIONS: This study moves beyond listing barriers or socio-ecological groupings, to explain how social and health systems interact to produce HIV care outcomes. Our findings challenge the implicit assumption of individual agency underpinning many retention studies to highlight the social nature of illness and healthcare utilization for HIV in Zambia. This understanding of collective action for accessing and remaining in HIV care should underpin future efforts to revise and reform HIV and potentially other chronic service models and systems.
'They care rudely!': resourcing and relational health system factors that influence retention in care for people living with HIV in Zambia.
(2018) Mwamba C; Sharma A; Mukamba N; Beres L; Geng E; Holmes CB; Sikazwe I; Topp SM; Centre for Infectious Disease Research in Zambia, Lusaka, Zambia.; School of Medicine, University of California, San Francisco, California, USA.; Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, USA.; College of Public Health Medical and Veterinary Sciences, James Cook University, Townsville, Queensland, Australia.; CIDRZ; Centre for Infectious Disease Research in Zambia (CIDRZ)
INTRODUCTION: Despite access to free antiretroviral therapy (ART), many HIV-positive Zambians disengage from HIV care. We sought to understand how Zambian health system 'hardware' (tangible components) and 'software' (work practices and behaviour) influenced decisions to disengage from care among 'lost-to-follow-up' patients traced by a larger study on their current health status. METHODS: We purposively selected 12 facilities, from 4 provinces. Indepth interviews were conducted with 69 patients across four categories: engaged in HIV care, disengaged from care, transferred to another facility and next of kin if deceased. We also conducted 24 focus group discussions with 158 lay and professional healthcare workers (HCWs). These data were triangulated against two consecutive days of observation conducted in each facility. We conducted iterative multilevel analysis using inductive and deductive reasoning. RESULTS: Health system 'hardware' factors influencing patients' disengagement included inadequate infrastructure to protect privacy; distance to health facilities which costs patients time and money; and chronic understaffing which increased wait times. Health system 'software' factors related to HCWs' work practices and clinical decisions, including delayed opening times, file mismanagement, drug rationing and inflexibility in visit schedules, increased wait times, number of clinic visits, and frustrated access to care. While patients considered HCWs as 'mentors' and trusted sources of information, many also described them as rude, tardy, careless with details and confidentiality, and favouring relatives. Nonetheless, unlike previously reported, many patients preferred ART over alternative treatment (eg, traditional medicine) for its perceived efficacy, cost-free availability and accompanying clinical monitoring. CONCLUSION: Findings demonstrate the dynamic effect of health system 'hardware' and 'software' factors on decisions to disengage. Our findings suggest a need for improved: physical resourcing and structuring of HIV services, preservice and inservice HCWs and management training and mentorship programmes to encourage HCWs to provide 'patient-centered' care and exercise 'flexibility' to meet patients' varying needs and circumstances.