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Background: COVID-19 pandemic disrupted organized HIV screening efforts, HIV testing and management worldwide, and the impact of these disruptions from private HIV care clinics have not been examined in Myanmar. PSI/Myanmar had adapted through partner clinics, Sun Quality Health Clinics (SQH) and Lan Pya Kyel clinics (LPK), with measures like online booking, staff scheduling and awareness campaigns. The purpose of this paper was to describe whether HIV-related services changed before, during, and after the COVID-19 pandemic in Myanmar. This study aimed to identify factors influencing ART retention and VL testing. Methodology: Data from 43 healthcare facilities across 8 regions (2018-2022) was analyzed for HIV indicators, including HIV tests, positive cases, ART retention, viral load (VL) testing, and suppression rates in two channels during different phases. Results: During the COVID-19 pandemic, both Channel 1 (SQH) and Channel 2 (LPK) showed fluctuations in HIV testing and new positive cases. Channel 1 had 28.2% decrease in testing (37 735 fewer tests) while Channel 2 had 8.1% increase (81 596 tests). However, testing numbers continued to decline. ART retention declined over 12 months compared to 6 months for both channels. Channel 1 had a slight drop in 6-month retention during the crisis (89.3-88.1%) but an increase in 12-month retention after. Channel 2 maintained high 6-month retention rates (>90%) but varied in 12-month rates (from 80.1% to 92.9%). Unsuccessful outcomes were more common at 12 months in both channels (4.7-21.8% in Channel 1; 7.1-19.9% in Channel 2). VL testing at 12 months significantly decreased during the crisis, notably in Channel 2 (81.9-1.3%). However, high rates of VL suppression (>91%) were consistently seen in those tested in both channels before, during, and after COVID-19. Univariable and multivariable cox proportional hazards models were used to identify factors influencing ART retention. Univariable and multivariable logistic regression analyses were done for VL testing. Factors such as residence location, the period of COVID-19, use of second-line ART, and patient demographics (such as age and key population type) influenced both. Specifically, individuals seeking care from Mandalay [aHR = 1.37, P value < 0.01], and enrolled for ART during or after COVID-19 [aHR = 3.31, P value < 0.01], were more likely to be retained at 12 months. VL testing was positively associated with having no TB [aOR = 1.35, P value < 0.01], being MSM [aOR = 1.69, P value < 0.01], PWIDs [aOR = 2.51, P value < 0.01], and seeking care at Channel 2[aOR = 1.76, P value < 0.01]. Conclusion: The study highlighted interruption in ART retention and VL testing because of the COVID-19 pandemic, emphasizing the need to maintain essential HIV services and address gaps based on patient demographics, clinic type, ART enrollment period, and location. Certain factors played a role in influencing these outcomes, providing insights into potential areas for improvement in HIV care and treatment during similar crisis situations to ensure consistent and effective HIV care. Plain Language Summary: Why Was the Study Done?: The COVID-19 pandemic disrupted HIV testing and treatment services worldwide. However, the impact on private HIV clinics in Myanmar has not been well studied. This study identified the extent to which HIV-related services had been affected by the COVID-19 pandemic in Myanmar and how we could overcome these challenges. What Did the Researchers Do?: The clinics adapted by implementing measures like online booking, staff scheduling changes, and awareness campaigns. The study looked at HIV program data from 43 healthcare facilities across 7 regions from 2018 to 2022, and the following HIV indicators: number of HIV tests done, positive HIV cases identified, ART retention, viral load (VL) testing, HIV viral suppression, were explored. The data was divided into two channels and different COVID-19 periods to see how these HIV services changed. What Did the Researchers Find?: It addressed a gap in existing studies by providing quantitative evidence from private clinics in Myanmar, shedding light on the impact of the pandemic on HIV-related care. The number of HIV tests done, and new HIV cases found fluctuated during the COVID-19 pandemic in both channels. ART retention declined at 12 months compared to 6 months in both channels. Unsuccessful treatment outcomes were more common at 12 months, while viral load (VL) testing significantly decreased during the crisis, especially in Channel 2. However, VL suppression rates remained high (>91%) in both channels. Factors influencing ART retention and VL testing included seeking care from Mandalay, initiating ART during or post-COVID-19, using second-line ART, and demographic variables such as age and belonging to key populations (MSM, PWID). What Do the Findings Mean?: Despite declines in viral load monitoring and treatment retention, it highlighted opportunities for improvement: multi-month medication supply, online counseling, and booking systems. The findings advocated for improvement in HIV care and treatment during similar crisis situations in the future. [ABSTRACT FROM AUTHOR]

Abstract Background Patient loss-to-follow-up (LTFU) in HIV care is a major challenge, especially in low-resource settings. Although the literature has focused on the total rate at which patients disengage from care, it has not sufficiently examined the specific risk periods during which patients are most likely to disengage from care. By addressing this gap, researchers and healthcare providers can develop more targeted interventions to improve patient engagement in HIV care. Methods We conducted a retrospective cohort study on newly enrolled adult HIV patients at seven randomly selected high-volume health facilities in Ethiopia from May 2022 to April 2024. Data analysis was performed using SPSS version 26, with a focus on the incidence rate of LTFU during the critical risk periods. Cumulative hazard analysis was used to compare event distributions, whereas a Poisson regression model was used to identify factors predicting LTFU, with statistical significance set at p

SETTING: Multidrug-resistant/rifampicin-resistant TB (MDR/RR-TB) is now endemic in the National Capital District (NCD), Papua New Guinea. Loss to follow-up (LTFU) is a challenge. OBJECTIVE: To evaluate and identify risk factors for LTFU, including pre-treatment LTFU, in adults with MDR/RR-TB at Port Moresby General Hospital (PMGH). DESIGN: A retrospective analysis of treatment initiation in adults diagnosed with MDR/RR-TB (2018–2022) and outcomes for a cohort treated for MDR/RR-TB (2014-2019). We assessed the factors associated with LTFU using multivariate logistic regression. RESULTS: Of 95 patients diagnosed with MDR/RR-TB at PMGH from 2018 to 2022, 21 (22%) were lost to follow-up before treatment. Of the 658 adults who initiated treatment for MDR/RR-TB at PMGH from 2014 to 2019, 161 (24%) were lost to follow-up during treatment. A higher proportion of patients on injectable-containing long regimens (110/404, 27%) were lost to follow-up than those on the all-oral regimen containing bedaquiline (13/66, 12%). Treatment loss to follow-up was associated with age (35–54 years age group: aOR 0.49, 95% CI 0.32–0.77; 55–75 years age group: aOR 0.42, 95% CI 0.19–0.90; compared to the 15–34 years age group), residence outside of NCD (aOR 1.79, 95% CI 1.04–3.06), and year of treatment initiation. CONCLUSION: Pre-treatment LTFU requires programmatic focus. Shorter oral regimens and decentralised services may address the reasons for higher LTFU in younger people and people living outside NCD.

Background: Patient loss-to-follow-up (LTFU) in HIV care is a major challenge, especially in low-resource settings. Although the literature has focused on the total rate at which patients disengage from care, it has not sufficiently examined the specific risk periods during which patients are most likely to disengage from care. By addressing this gap, researchers and healthcare providers can develop more targeted interventions to improve patient engagement in HIV care. Methods: We conducted a retrospective cohort study on newly enrolled adult HIV patients at seven randomly selected high-volume health facilities in Ethiopia from May 2022 to April 2024. Data analysis was performed using SPSS version 26, with a focus on the incidence rate of LTFU during the critical risk periods. Cumulative hazard analysis was used to compare event distributions, whereas a Poisson regression model was used to identify factors predicting LTFU, with statistical significance set at p < 0.05. Results: The analysis included 737 individuals newly enrolled in HIV care; 165 participants (22.4%, 95% CI: 19.5–25.2) were LTFU by the end of two years, of which 50.1% occurred within the first 6 months, 29.7% within 7–12 months, and 19.4% from 13 to 24 months on ART. The overall incidence rate of LTFU was 18.3 per 1,000 PMO (95% CI: 15.9–20.6), with rates of 167.7 in the first 6 months, 55.4 in 7–12 months, and 18.1 in 13–24 months. Incomplete addresses lacking a phone number or location information (IRR: 1.61; 95% CI: 1.14, 2.27) and poor adherence (IRR: 1.78; 95% CI: 1.28, 2.48) were factors predicting the incidence rate of LTFU. Conclusion: LTFU peaked in the first 6 months, accounting for approximately half of total losses, remained elevated from months 7–12, and stabilized after the first year of HIV care and treatment. Address information and adherence were predictors of LTFU. To effectively minimize LTFU, efforts should focus on intensive support during the first six months of care, followed by sustained efforts and monitoring in the next six months. Our findings highlight a critical period for targeted interventions to reduce LTFU in HIV care. [ABSTRACT FROM AUTHOR]

BackgroundA better understanding why people living with HIV (PLHIV) become lost to follow-up (LTFU) and determining who is LTFU in a program setting is needed to attain HIV epidemic control.SettingThis retrospective cross-sectional study used an evidence-sampling approach to select health facilities and LTFU patients from a large HIV program supporting 61 health facilities in Kisumu County, Kenya.MethodsEligible PLHIV included adults 18 years and older with at least 1 clinic visit between September 1, 2016, and August 31, 2018, and were LTFU (no clinical contact for ≥90 days after their last expected clinic visit). From March to June 2019, demographic and clinical variables were collected from a sample of LTFU patient files at 12 health facilities. Patient care status and retention outcomes were determined through program tracing.ResultsOf 787 LTFU patients selected and traced, 36% were male, median age was 30.5 years (interquartile range: 24.6-38.0), and 78% had their vital status confirmed with 560 (92%) alive and 52 (8%) deceased. Among 499 (89.0%) with a retention outcome, 233 (46.7%) had stopped care while 266 (53.3%) had self-transferred to another facility. Among those who had stopped care, psychosocial reasons were most common {65.2% [95% confidence interval (CI): 58.9 to 71.1]} followed by structural reasons [29.6% (95% CI: 24.1 to 35.8)] and clinic-based reasons [3.0% (95% CI: 1.4 to 6.2)].ConclusionWe found that more than half of patients LTFU were receiving HIV care elsewhere, leading to a higher overall patient retention rate than routinely reported. Similar strategies could be considered to improve the accuracy of reporting retention in HIV care.

BackgroundGlobally, loss to follow-up (LTFU) remains a significant public health concern despite the rapid expansion of antiretroviral medication programs. It is a significant cause of treatment failure and threatens the enhancement of HIV treatment outcomes among patients on antiretroviral therapy (ART). However, there is a paucity of evidence on its incidence and predictors in Ethiopia. Thus, this study aimed to examine the incidence and predictors of LTFU among adult HIV patients receiving ART at hospitals in Central Ethiopia.MethodsA multi-centered facility-based retrospective cohort study was conducted among 432 randomly selected adult patients who received antiretroviral therapy. Data were entered into EpiData version 3.1 and exported to Stata version 14 for analysis. The Kaplan–Meier failure function was employed to determine the overall failure estimates, and the log-rank test was used to compare the probability of failure among the different categories of variables. The Cox proportional hazard model was used to identify independent predictors of LTFU.ResultsOverall, 172 (39.8%) study participants were lost to follow-up over the 10-year follow-up period with an incidence rate of 8.12 (95% CI: 7.11, 9.09) per 1,000 person-months. Undisclosed HIV status (AHR: 1.96, 95% CI: 1.14, 3.36), not able to work (AHR: 1.84, 95% CI: 1.13, 2.22), opportunistic infections (AHR: 3.13, 95% CI: 2.17, 4.52), CD4

Background: Same day or rapid ART initiation was suitable for asymptomatic HIV stage. Studies have shown benefits in faster virological suppression and reduction of loss to follow up rate. Objective: To compare virological outcome at 24 and 72 weeks in adult HIV infection starting ART within two weeks as the rapid ART group, or more than two weeks as the standard care group. Materials and Methods: A retrospective cohort study was conducted at Chiangrai Prachanukroh Hospital, Chiangrai, Thailand. All new cases of patients diagnosed with HIV infection between October 1, 2012 and September 30, 2019 were included. The study included demographic data and virological outcome at 24 weeks and 72 weeks, status of loss to follow up or death. Results: One thousand seven new adult HIV cases were reviewed. Mean age was 34.03±11.27 years old. Male was predominant at 70.51%, mode of transmission was heterosexual at 87.49%. Median CD4 of cases was 268 cells/mm?. Of all the cases. 36.6% of cases were prescribed ART within 14 days with a median of eight days. NNRTI base regimen was given in 93.64% of the cases. Virological suppression less than 40 copies/mL at 24 weeks was 84.94% in rapid ART group compared with 82.92% in standard group. There was no statistical difference between the groups (p=0.747). Virological suppression less than 40 copies/mL at 72 weeks was 97.14% in rapid ART group compared with 93.84% in standard group, with no statistical difference (p=0.079). Retention to care was higher in rapid ART groups (p=0.012) and mortality rate was lower in rapid ART group (p=0.003). Loss to follow up rate was not different between the groups. Conclusion: There was no differences in virological outcome and loss to follow up between the rapid ART and standard groups, but there was better retention to care and lower mortality rate in the rapid ART group. [ABSTRACT FROM AUTHOR]

Purpose: Human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS) remains a global public health challenge and epidemic disease in sub-Saharan African (SSA) countries. Retention in HIV care should be emphasized to reach", 95-95-95" the Joint United Nations Program on HIV/AIDS (UNAIDS) target by 2030. In Tanzania, in spite of existing strategies to ensure retention, loss to follow-up (LTFU) among HIV-infected men is still a common challenge. With limited studies focusing on men's population, little is known on their perspectives on factors contributing to LTFU. This study aimed to explore factors contributing to LTFU among men living with HIV/AIDS in the Kibaha district and to try to formulate strategies that work for men. Methods: The qualitative study using a phenomenological approach was conducted among 16 men with experience in LTFU from three HIV care and treatment clinics located in the Kibaha district. Purposive sampling was used to select informants for semi-structured in-depth interviews from August to December, 2021. The collected data was analyzed thematically. Results: The findings were grouped into three themes which highlightedthe contribution of individual factors, socio-economic factors and health system factors. These factors include anticipated HIV-related stigma, lack of disclosure of their HIV status to their partners, poor knowledge on HIV care, unbearable antiretroviral (ART) medication side effects, sharing of ART medications with their partners, perceived good health status, financial difficulties, work-related travels, demanding employment schedules, spiritual belief in faith healing, poor conduct among healthcare workers and loss of Care and Treatment Clinic (CTC) cards hindered their use of ART services at clinics. Conclusion: The findings from this study revealed linked multi-level factors that influence LTFU from HIV care among HIV-infected men. In order to retain men in HIV care, tailored intervention approaches should be formulated. [ABSTRACT FROM AUTHOR]

ObjectivesDrug-resistant tuberculosis remains a serious public health problem worldwide, particularly in developing countries, including China. This study determined treatment outcomes among a cohort in Guangzhou, China, and identified factors associated with them.MethodsWe initiated a retrospective study using drug-resistant TB data in Guangzhou from 2016 to 2020, managed by Guangzhou Chest Hospital. A competing risk model was used to identify the factors associated with treatment failure and death, as well as loss to follow-up (LTFU).ResultsA total of 809 patients were included in the study, of which 281 were under treatment. Of the remaining 528 who had clear treatment outcomes, the number and proportion of treatment success, treatment failure, death, and LTFU were 314 (59.5%), 14 (2.7%), 32 (6.0%), and 168 (31.8%), respectively. Being older and having cavities involving the upper lungs were risk factors for treatment failure and death, while non-Guangzhou household registration and interprovincial mobility were risk factors associated with LTFU.ConclusionTreatment failure and death were significantly associated with cavitation in the lungs, and LTFU was significantly associated with household registration and geographical mobility. Early identification of factors associated with different treatment outcomes is extremely important for policymakers, health experts, and researchers to implement appropriate strategies and measures to treat and manage the TB-infected population in China.

Girish Degavi BuleHoraUniversity’s Department of Nursing, College of Health and Medical Science, Bulehora, Hageremaryam, EthiopiaCorrespondence: Girish DegaviBuleHora University’s Department of Nursing, College of Health and Medical Science, Bulehora, Hageremaryam, EthiopiaTel +251-966686212Email girishdegavi1984@gmail.comBackground: Broadening access to healthcare (ART) antiretroviral therapy has led to a 19% reduction in the death rate of people infected with the human immunodeficiency virus. This study would also describe the status and deciding factors of ART in (TB) tuberculosis centers in public hospitals of Benishangul-Gumuz, Ethiopia, for (LTFU) lost follow-up among (RVI) retroviral infected patients.Methods: Hospital-based, unrivalled analysis of the case management (3:1) design was conducted. A total of 752 study participants (563 controls and 189 cases) Picked by systematic random sampling methodology, and where reviewed their charts from TB Centers. Data were entered and cleaned using Epi data version 3.1.1 and then exported to SPSS version 22 for analysis. To analyze the statistical relationship between the outcome variable and independent variables, binary logistic regression was used. Relevance was declared at a p-value < 0.05.Results: A total of 1122 (25.3%) were LTFU. Among index cases with male cases, there were higher odds of lost to follow up (AOR= 1.68, 95% CI; 1.085, 2.609), 15– 24 old age group have no formal education, civil servant were also having high comparatively. In index cases with identified parents, the risk of LTFU up had lower HIV status (AOR=0.5; 95% CI; 0.24, 0.997). Rest all variables showed low odds to LTFU.Conclusion: A large number of patients enrolled in ARTwere missing from follow-up at TB centers, but unfortunately did not make the next appointment reported. The absence of prophylaxis was accepted as an independent determinant of LTFUfor ART.Keywords: HIV/AIDS, RVI patients, LTFU, antiretroviral therapy, Benishangul-Gumuz

Luisa Giaccone,1,2 Francesco Felicetti,3 Sara Butera,1,2 Danilo Faraci,1,2 Marco Cerrano,1,2 Margherita Dionisi Vici,3 Lucia Brunello,1,2 Nicoletta Fortunati,3 Enrico Brignardello,3,* Benedetto Bruno1,2,* 1Division of Hematology, Azienda Ospedaliera Universitaria Città della Salute e della Scienza di Torino, University of Torino, Torino, Italy; 2Dipartimento di Biotecnologie Molecolari e Scienze per la Salute, University of Torino, Torino, Italy; 3Transition Unit for Childhood Cancer Survivors, Azienda Ospedaliera Universitaria Città della Salute e della Scienza di Torino, University of Torino, Torino, Italy*These authors contributed equally to this workCorrespondence: Luisa GiacconeDivision of Hematology, Azienda Ospedaliera Universitaria Città della Salute e della Scienza di Torino, Via Genova 3, Torino 10126, ItalyTel +39 011-6334354Fax +39 011-6963737Email luisa.giaccone@unito.itAbstract: The increasing indications for allogeneic stem-cell transplant in patients with hematologic malignancies and non-malignant diseases combined with improved clinical outcomes have contributed to increase the number of long-term survivors. However, survivors are at increased risk of developing a unique set of complications and late effects, besides graft-versus-host disease and disease relapse. In this setting, the management capacity of a single health-care provider can easily be overwhelmed. Thus, to provide appropriate survivorship care, a multidisciplinary approach for the long-term follow-up is essential. This review aims at summarizing the most relevant information that a health-care provider should know to establish a follow-up care plan, in the light of individual exposures and risk factors, that includes all organ systems and considers the psychological burden of these patients.Keywords: long-term, complications, allografting

Abstract Background Early infant diagnosis (EID) of HIV-exposed and initiation of HIV-positive infants on anti-retroviral therapy (ART) requires a well-coordinated cascade of care. Loss-to-follow-up (LTFU) can occur at multiple steps and effective EID is impeded by human resource constraints, difficulty with patient tracking, and long waiting periods. The objective of this research was to conduct formative research to guide the development of an intervention to improve the pediatric HIV care cascade in central Mozambique. The study was conducted in Manica and Sofala Provinces where the adult HIV burden is higher than the national average. The research focused on 3 large clinics in each province, along the highly populated Beira corridor. Methods The research was conducted in 2014 over 3 months at six facilities and consisted of 1) patient flow mapping and collection of health systems data from postpartum, child-at-risk, and ART service registries, 2) measurement of clinic waiting times, and 3) patient and health worker focus groups. Results HIV testing and ART initiation coverage for mothers tends to be high, but EID and pediatric ART initiation are hampered by lack of patient tracking, long waiting times, and inadequate counseling to navigate the care cascade. About 76% of HIV-positive infants were LTFU and did not initiate ART. Conclusions Effective interventions to reduce LTFU in EID and improve pediatric ART initiation should focus on patient tracking, active follow-up of defaulting patients, reduction in EID turn-around times for PCR results, and initiation of ART by nurses in child-at-risk services. Trial registration Retrospectively registered, ISRCTN67747315 , July 24, 2019.

High rates of lost to follow-up (LTFU) adult patients are a major concern in the long-term management of phenylketonuria (PKU). To address this issue, we designed the project "Backtoclinic" with the purpose of identifying LTFU adult PKU patients in Austria as a first step to reestablish appropriate treatment. Individuals born between 1966 and 1999 and diagnosed with PKU through the National Austrian Newborn Screening Program (NANSP) were identified using the NANSP's database. Follow-up data were collected in the Austrian metabolic centers (Medical University of Vienna, Graz, Innsbruck and Salzburg). Patients with no contact to any of these centers within the previous two years were classified as LTFU. Epidemiological characteristics of the whole study population as well as of LTFU- and currently in follow-up patients were analyzed. Between 1966 and 1999, 281 individuals were diagnosed with PKU through the NANSP. Two patients died in their first year of life and were excluded from the analysis. Of the remaining 279 patients (mean age ± SD: 36.7 ± 9.1 y, 42.7% females), 177 (63.4%) are currently LTFU. The rate of LTFU patients is higher in men than in women (68.1% vs 57.5%), and markedly increases with age in both sexes. The gender gap is greatest in young adults (52.6% vs. 25.0% in the age range 20.0–24.9 y) and declines with age (94.4% vs. 80.0% in the age range > 45.0 y). We found an alarming rate of 63.4% of LTFU adult PKU patients in Austria, and observed a gender gap in the PKU state of care. Our findings illustrate the urgent need for the metabolic community to identify LTFU adult PKU patients and to develop strategies to reestablish appropriate treatment for men and women with PKU. [ABSTRACT FROM AUTHOR]

Abstract Background Lifelong antiretroviral therapy for HIV infected pregnant and lactating women (Option B+) has been rapidly scaled up but there are concerns about poor retention of women initiating treatment. However, facility-based data could underestimate retention in the absence of measures to account for self-transfers to other facilities. We assessed retention-in-care among women on Option B+ in Uganda, using facility data and follow-up to ascertain transfers to other facilities. Methods In a 25-month retrospective cohort analysis of routine program data, women who initiated Option B+ between March 2013 and March 2015 were tracked and interviewed quantitatively and qualitatively (in-depth interviews). Kaplan Meier survival analysis was used to estimate time to loss-to-follow-up (LTFU) while multivariable Cox proportional hazards regression was applied to estimate the adjusted predictors of LTFU, based on facility data. Thematic analysis was done for qualitative data, using MAXQDA 12. Quantitative data were analyzed with STATA® 13. Results A total of 518 records were reviewed. The mean (SD) age was 26.4 (5.5) years, 289 women (55.6%) attended primary school, and 53% (276/518) had not disclosed their HIV status to their partners. At 25 months post-ART initiation, 278 (53.7%) were LTFU based on routine facility data, with mean time to LTFU of 15.6 months. Retention was 60.2 per 1000 months of observation (pmo) (95% CI: 55.9–64.3) at 12, and 46.3/1000pmo (95% CI: 42.0–50.5) at 25 months. Overall, 237 (55%) women were successfully tracked and interviewed and 43/118 (36.4%) of those who were classified as LTFU at facility level had self-transferred to another facility. The true 25 months post-ART initiation retention after tracking was 71.3% (169/237). Women

Background: Loss to follow up of tuberculosis patient during diagnosis is an important barrier to achieve elimination of TB by 2025 in India. This study estimated the burden and trend of loss to follow up of TB patient during diagnosis, explored tuberculosis patient's perspective for becoming Loss To Follow Up during diagnostic period (LTFU) and stakeholders' initiatives and suggested solutions for the same. Methods: Mixed Method study was used - Quantitative (Record based cohort study) and Qualitative (In - depth interview with LTFU patients on their challenges faced and barriers for not giving 2nd sputum sample and free list with stakeholders). Data were extracted from RNTCP Laboratory Register for the cohort of patients registered between January 2014 and December 2018 in a DMC of tertiary care teaching hospital. Qualitative interviews were carried out using interview guide. Results: Of the total 1678 positive cases, 90 (5.3%) were LTFU. On adjusted analysis distance >75km from medical college (Relative risk 2.3; 95%CI: 1.2-4.3) and year of diagnosis were identified as significant risk factors. In Manual content analysis showed five categories of challenges faced by LTFU cases namely 1) lack of awareness; 2) addictions; 3) stigma; 4) Employment related barriers and 5) perception on drug side effects. Free listing conducted between staffs of hospital and from stakeholders the main suggested solutions identified were 1) context-based counselling; 2) friendly patient tracking; and 3) proactive in-service. Conclusion: There was significantly decreasing trend in LTFU patients over the years (in 2014 - 6% to 0.5% in 2018). Co-ordinated context-specific pro-active interventions are required to achieve End TB strategy of the nation. [ABSTRACT FROM AUTHOR]

Background: Early infant diagnosis (EID) of HIV-exposed and initiation of HIV-positive infants on anti-retroviral therapy (ART) requires a well-coordinated cascade of care. Loss-to-follow-up (LTFU) can occur at multiple steps and effective EID is impeded by human resource constraints, difficulty with patient tracking, and long waiting periods. The objective of this research was to conduct formative research to guide the development of an intervention to improve the pediatric HIV care cascade in central Mozambique. The study was conducted in Manica and Sofala Provinces where the adult HIV burden is higher than the national average. The research focused on 3 large clinics in each province, along the highly populated Beira corridor.Methods: The research was conducted in 2014 over 3 months at six facilities and consisted of 1) patient flow mapping and collection of health systems data from postpartum, child-at-risk, and ART service registries, 2) measurement of clinic waiting times, and 3) patient and health worker focus groups.Results: HIV testing and ART initiation coverage for mothers tends to be high, but EID and pediatric ART initiation are hampered by lack of patient tracking, long waiting times, and inadequate counseling to navigate the care cascade. About 76% of HIV-positive infants were LTFU and did not initiate ART.Conclusions: Effective interventions to reduce LTFU in EID and improve pediatric ART initiation should focus on patient tracking, active follow-up of defaulting patients, reduction in EID turn-around times for PCR results, and initiation of ART by nurses in child-at-risk services.Trial Registration: Retrospectively registered, ISRCTN67747315, July 24, 2019. [ABSTRACT FROM AUTHOR]

Abstract Background Psychosocial factors have been linked with loss to follow-up (LTFU) and clinical outcomes among people living with HIV (PLH), however little is known about the effect of psychosocial support on LTFU among PLH in treatment and care. The purpose of this study was to explore the effect of NAMWEZA (“Yes, together we can”) friends’ psychosocial support intervention on clinical outcomes and LTFU among PLH. NAMWEZA is based on a novel program using “appreciative inquiry”, positive psychology approaches to empower, promote positive attitudes and foster hope. Methods PLH participating in the NAMWEZA intervention in HIV care clinics in Dar es Salaam Tanzania were compared with non-exposed PLH obtained from facilities that routinely collect clinical information and both followed longitudinally for 24 months. Baseline sociodemographic, clinical measures (CD4 cell count, hemoglobin (HGB), weight), and LTFU measures were collected. Chi square, Fisher’s exact tests, and t-tests were used to compare the frequencies for categorical variables and the means of continuous variables from the intervention and the comparison groups to identify variables that were significantly different across the two groups. Random effects models were performed to examine the bivariate associations between the intervention status and clinical outcomes. Results At the end of 24 months of follow-up mean CD4 count and HGB levels increased significantly in both intervention and comparison groups (p = 0.009 and p

In 2013, Tanzania adopted the World Health Organization's Option B+ guidelines for prevention of mother-to-child transmission of HIV (PMTCT), whereby all HIV-infected pregnant women initiate lifelong antiretroviral therapy. This study examined retention in PMTCT across critical junctures in the care continuum. This was a retrospective study of patient-level data for a cohort of women enrolled in PMTCT during the first year of Option B+ in Tanzania. Retention in care was described across three periods: (1) the first month of antenatal care (ANC), (2) pregnancy, and (3) the postpartum period. Logistic regression was used to identify factors associated with loss to follow up (LTFU) during the first month of ANC. Survival analyses were used to identify factors associated with LTFU during pregnancy and the postpartum periods. 650 participants were included in the cohort; 262 (40.3%) were newly diagnosed with HIV. Two years after delivery, 383/650 (58.7%) were LTFU. Of the 383 LTFU, 73 (19.1%) were lost during the first month of ANC, 44 (11.5%) during pregnancy, and 266 (69.5%) after delivery. Being newly diagnosed with HIV predicted higher LTFU during the first month of ANC (aOR 1.76; 95% CI 1.06–2.94) and faster time to LTFU during the postpartum period (adjusted relative time, 0.68; 95% CI 0.51–0.89). High LTFU occurred across the PMTCT continuum, including immediately after enrollment into ANC and the postpartum period. Ongoing research is needed to encourage treatment uptake and sustained engagement after delivery. [ABSTRACT FROM AUTHOR]

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Background: Psychosocial factors have been linked with loss to follow-up (LTFU) and clinical outcomes among people living with HIV (PLH), however little is known about the effect of psychosocial support on LTFU among PLH in treatment and care. The purpose of this study was to explore the effect of NAMWEZA ("Yes, together we can") friends' psychosocial support intervention on clinical outcomes and LTFU among PLH. NAMWEZA is based on a novel program using "appreciative inquiry", positive psychology approaches to empower, promote positive attitudes and foster hope. Methods: PLH participating in the NAMWEZA intervention in HIV care clinics in Dares Salaam Tanzania were compared with non-exposed PLH obtained from facilities that routinely collect clinical information and both followed longitudinally for 24 months. Baseline sociodemographic, clinical measures (CD4 cell count, hemoglobin (HGB), weight), and LTFU measures were collected. Chi square, Fisher's exact tests, and t-tests were used to compare the frequencies for categorical variables and the means of continuous variables from the intervention and the comparison groups to identify variables that were significantly different across the two groups. Random effects models were performed to examine the bivariate associations between the intervention status and clinical outcomes. Results: At the end of 24 months of follow-up mean CD4 count and HGB levels increased significantly in both intervention and comparison groups (p = 0.009 and p < 0.0001, respectively). Weight increased significantly only in the intervention group (p = 0.003). Cumulative LTFU was three times higher in the comparison compared to the intervention (p < 0.001) group. Having a low CD4 count, extremes of weight, low HGB, younger age, and male gender were significantly associated with LTFU among the unexposed group, while being on ART for duration of 12 months or more was protective against LTFU in those intervened. Conclusion: Among PLH on ART, exposed or not exposed to NAMWEZA intervention, clinical care outcomes improved over time. LTFU was much higher in the comparison group with factors commonly known to predict LTFU only apparent in the comparison group. NAMWEZA could be a promising peer-facilitated model to reduce LTFU among PLH in care that can be integrated in ART services; however, more research is needed to evaluate its longer term effects. [ABSTRACT FROM AUTHOR]

Background. Older age at initiation of combination antiretroviral therapy (cART) has been associated with poorer clinical outcomes. Our objectives were to compare outcomes between older and younger patients in our clinical cohort in Jos, Nigeria. Methods. This retrospective cohort study evaluated patients enrolled on cART at the Jos University Teaching Hospital, Nigeria between 2004 and 2012. We compared baseline and treatment differences between older (≥50 years) and younger (15-49 years) patients. Kaplan-Meier analysis and Cox proportional hazard models estimated survival and loss to follow-up (LTFU) and determined factors associated with these outcomes at 24 months. Results. Of 8352 patients, 643 (7.7%) were aged ≥50 years. The median change in CD4 count from baseline was 151 vs 132 (P = .0005) at 12 months and 185 vs 151 cells/mm3 (P = .03) at 24 months for younger and older patients, respectively. A total of 68.9% vs 71.6% (P = .13) and 69.6% vs 74.8% (P = .005) of younger and older patients achieved viral suppression at 12 and 24 months, with similar incidence of mortality and LTFU. In adjusted hazard models, factors associated with increased risk of mortality were male sex, World Health Organization (WHO) stage III/IV, and having a gap in care, whereas being fully suppressed was protective. The risk of being LTFU was lower for older patients, those fully suppressed virologically and with adherence rates >95%. Male sex, lack of education, WHO stage III/IV, body mass index <18.5 kg/m2, and having a gap in care independently predicted LTFU. Conclusions. Older patients achieved better viral suppression, and older age was not associated with increased mortality or LTFU in this study. [ABSTRACT FROM AUTHOR]

The expansion of Prevention of Mother to Child Transmission (PMTCT) services globally has been accompanied by significant rates of loss to follow-up (LTFU). This study explored barriers and facilitators to participation in PMTCT programmes for pregnant and post-partum women living with HIV who had been LTFU at public sector antenatal care facilities in the Vallée du Bandama region of Côte d'Ivoire, West Africa. Three types of interviews were conducted at seven health sites: (1) individual or small group interviews with health staff; (2) one focus group with women actively enrolled in PMTCT services; and (3) individual interviews with women who had been LTFU from PMTCT services. Ten main themes emerged and were classified within a modified social ecological model. The individual level barriers included discouragement and internalised stigma, while hope for self/child's health was a facilitator. The family/community level barriers were fear of stigma and gender inequities. The health system level barriers were unclear information and poor post-test counselling, while staff advice and support groups were facilitators. The structural level barrier was associated costs. Factors on all four levels of the social ecological model must be addressed in order to maximise adherence to PMTCT services. [ABSTRACT FROM PUBLISHER]

Setting: Sao Tomé and Principe (STP) is a lower middle-income country in the Gulf of Guinea that has a persistent high loss of TB patients on treatment., Objective: To investigate factors associated with patient loss to follow-up (LTFU) and to assess health worker perceptions on non-adherence., Design: A retrospective cohort study was conducted using data from the national database. Factors associated with LTFU were investigated using univariable and multivariable logistic regression. In-depth interviews were conducted with TB health workers to identify perceived barriers for treatment completion., Results: A total of 822 registered patients with drug-susceptible TB were included, of whom 82 (10.0%) were lost to follow-up. Male sex (adjusted OR [aOR] 1.7, 95% CI 1.0-3.0; P = 0.048), as well as living in the Mé-Zóchi and Caué Districts (aOR 2.60, 95% CI 1.58-4.26; P < 0.001) were associated with an increased odds of LTFU. The main barriers to treatment completion were related to lack of food, stigma, and lack of patient information and personal support., Conclusion: The study indicates the need to address multiple issues related to LTFU during TB treatment. Enhanced efforts to personalise care, especially for information, nutrition and encouragement will better support patients in STP., Competing Interests: Conflicts of interest: none declared., (© 2022 The Union.)

Purpose: Human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS) remains a global public health challenge and epidemic disease in sub-Saharan African (SSA) countries. Retention in HIV care should be emphasized to reach", 95-95-95" the Joint United Nations Program on HIV/AIDS (UNAIDS) target by 2030. In Tanzania, in spite of existing strategies to ensure retention, loss to follow-up (LTFU) among HIV-infected men is still a common challenge. With limited studies focusing on men's population, little is known on their perspectives on factors contributing to LTFU. This study aimed to explore factors contributing to LTFU among men living with HIV/AIDS in the Kibaha district and to try to formulate strategies that work for men., Methods: The qualitative study using a phenomenological approach was conducted among 16 men with experience in LTFU from three HIV care and treatment clinics located in the Kibaha district. Purposive sampling was used to select informants for semi-structured in-depth interviews from August to December, 2021. The collected data was analyzed thematically., Results: The findings were grouped into three themes which highlightedthe contribution of individual factors, socio-economic factors and health system factors. These factors include anticipated HIV-related stigma, lack of disclosure of their HIV status to their partners, poor knowledge on HIV care, unbearable antiretroviral (ART) medication side effects, sharing of ART medications with their partners, perceived good health status, financial difficulties, work-related travels, demanding employment schedules, spiritual belief in faith healing, poor conduct among healthcare workers and loss of Care and Treatment Clinic (CTC) cards hindered their use of ART services at clinics., Conclusion: The findings from this study revealed linked multi-level factors that influence LTFU from HIV care among HIV-infected men. In order to retain men in HIV care, tailored intervention approaches should be formulated., Competing Interests: The authors declare that there is no competing interests in this work. No funding was provided by any financial or academic institution for this study., (© 2022 Mandawa and Mahiti.)

Background: Follow up of Human Immunodeficiency Virus (HIV)-exposed infants is an important component of Prevention of Mother-to-Child Transmission (PMTCT) programmes in order to ascertain infant outcomes post delivery. We determined HIV transmission, mortality and loss to follow-up (LTFU) of HIV-exposed infants attending a postnatal clinic in an urban hospital in Durban, South Africa.Methods: We conducted a retrospective cohort study of infants born to women in the PMTCT programme at McCord Hospital, where mothers paid a fee for service. Data were abstracted from patient records for live-born infants delivered between 1 May 2008 and 31 May 2009. The infants' LTFU status and age was based on the date of the last visit. HIV transmission was calculated as a proportion of infants followed and tested at six weeks. Mortality rates were analyzed using Kaplan-Meier (K-M), with censoring on 15 January 2010, LTFU or death. Results: Of 260 infants, 155 (59.6%) remained in care at McCord beyond 28 weeks: one died at < 28 days, three died between one to six months; 34 were LTFU within seven days, 60 were LTFU by six months. K-M mortality rate: 1.7% at six months (95% confidence interval (CI): 0.6% to 4.3%). Of 220 (83%) infants tested for HIV at six weeks, six (2.7%, 95% CI: 1.1% to 5.8%) were HIV-infected. In Cox regression analysis, late antenatal attendance (≥ 28 weeks gestation) relative to attending in the first trimester was a predictor for infant LTFU (adjusted hazards ratio = 2.3; 95% CI: 1.0 to 5.1; p = 0.044). Conclusion: This urban PMTCT programme achieved low transmission rates at six weeks, but LTFU in the first six months limited our ability to examine HIV transmission up to 18 months and determinants of mortality. The LTFU of infants born to women who attended antenatal care at 28 weeks gestation or later emphasizes the need to identify late antenatal attendees for follow up care to educate and support them regarding the importance of follow up care for themselves and their infants. [ABSTRACT FROM AUTHOR]

Background: TB is one of the top 10 causes of death worldwide. The WHO adopted the End TB Strategy with ambitious goal of ending the global TB epidemic by 2030. The targets for this were 95% reduction in number of TB deaths, 90% reduction in TB incidence rate between 2015 and 2035 and to ensure that no family is burdened with catastrophic expenditure due to TB. Enhanced case detection is one of the components of End TB strategy adopted by WHO and within this Active Case Finding has an important place. However, its role in the Indian context needs to be assessed., Aims and Objectives: To study the impact of Active Case Finding (ACF) in National Tuberculosis Elimination Program (NTEP) implementing area of National Institute of TB and Respiratory Diseases New Delhi in terms of case detection and treatment outcome., Materials and Methods: The TB patients detected during ACF through house to house survey in vulnerable population were identified, evaluated and followed up. Data from ACF records and TB treatment cards were filled in a pretested proforma and compared with passive case detection in the previous month from same area., Results: In December 2017 a total 8600 vulnerable population (living in slums, camps and night shelters) were screened over two weeks of whom 85 were found to have symptoms suggestive of TB of whom 19 were PTB that gives a case detection rate of 220 per lakh population. PTB case detection rate by passive case finding (PCF) in November 2017 from the same area of our study was found to be 63 per lakh population. This difference between the detection rate in ACF and passive case findings was statistically significant with Z proportion test and p value <0.00001. Treatment success rate was 75% and lost to follow up rate was 25% patients among the PTB patients detected in ACF. In passive case detection from the same area in November 2017 treatment success rate was 81.8% and lost to follow up rate (LTFU) was 18% in PTB patients. Even though LTFU rate was slightly higher but was not statistically significant., Conclusion: ACF is an effective way to find additional cases of TB. ACF is more labour intensive than PCF but if judiciously used under national programme to target specific vulnerable population of society it can produce additional number of TB cases which otherwise would have gone undiagnosed. However, treatment outcome for these patients is below the target and hence to get the maximum impact of ACF there is a need to enhance the adherence to treatment through different methodologies. Poor treatment adherence will lead to increase transmission risk in communities and greater chance of developing drug resistance. Further studies with larger representative population should be undertaken in order to get more conclusive., Competing Interests: Conflicts of interest All authors have none to declare., (Copyright © 2020 Tuberculosis Association of India. Published by Elsevier B.V. All rights reserved.)

Background: Providing medical care for non-communicable diseases (NCDs) in rural sub-Saharan Africa has proved to be difficult because of poor treatment adherence and frequent loss to follow-up (LTFU). The reasons for this are poorly understood., Objective: To investigate LTFU among patients with two different but common NCDs who attended rural Ethiopian health centres., Method: The study was based in five health centres in southern Ethiopia with established NCD clinics run by nurses and health officers. Patients with epilepsy or hypertension who were lost to follow-up and non-LTFU comparison patients were identified and traced; a questionnaire was administered enquiring about the reasons for LTFU., Results: Of the 147 LTFU patients successfully located, 62 had died, moved away or were attending other medical facilities. The remaining 85 patients were compared with 211 non-LFTU patients. The major factors associated with LTFU were distance from the clinic, associated costs and a preference for traditional treatments, together with a misunderstanding of the nature of NCD management., Conclusions: The delivery of affordable care closer to the patients' homes has the greatest potential to address the problem of LTFU. Also needed are increased levels of patient education and interaction with traditional healers to explain the nature of NCDs and the need for life-long management., Competing Interests: Conflicts of interest: none declared., (© 2019 The Union.)

Retaining adolescents (aged 10-19 years), living with HIV (ALHIV) on antiretroviral therapy (ART) is challenging. In Myanmar, 1269 ALHIV were under an Integrated HIV Care (IHC) Programme by June 2017 and their attrition (death and lost to follow-up) rates were not assessed before. We undertook a cohort study using routinely collected data of ALHIV enrolled into HIV care from July 2005 to June 2017 and assessed their attrition rates in June 2018 by time-to-event analysis. Of 1269 enrolled, 197(16%) and of 1054 initiated ART, 224 (21%) had an attrition defining event. The pre-ART and ART attrition rates were 21.8 (95% CI 19.0-25.1) and 6.4 (95% CI 5.6-7.3) per 100 person-years follow-up, respectively. The factors 'at enrolment' that were associated with higher hazards of attrition were: (1) WHO stage 3 or 4; (2) haemoglobin <10 gm/dl; (3) no documented CD4 cell counts, hepatitis B and C test results; and (4) injection drug use. Baseline hazards were high during the initial 1-2 years and after 5-6 years. The pre-ART and ART attrition rates in ALHIV were lower than those in Africa but higher than the children under IHC. This warrants designing and implementing additional care tailored to the needs of ALHIV under IHC. [ABSTRACT FROM AUTHOR]

Background: Lifelong antiretroviral therapy for HIV infected pregnant and lactating women (Option B+) has been rapidly scaled up but there are concerns about poor retention of women initiating treatment. However, facility-based data could underestimate retention in the absence of measures to account for self-transfers to other facilities. We assessed retention-in-care among women on Option B+ in Uganda, using facility data and follow-up to ascertain transfers to other facilities.Methods: In a 25-month retrospective cohort analysis of routine program data, women who initiated Option B+ between March 2013 and March 2015 were tracked and interviewed quantitatively and qualitatively (in-depth interviews). Kaplan Meier survival analysis was used to estimate time to loss-to-follow-up (LTFU) while multivariable Cox proportional hazards regression was applied to estimate the adjusted predictors of LTFU, based on facility data. Thematic analysis was done for qualitative data, using MAXQDA 12. Quantitative data were analyzed with STATA® 13.Results: A total of 518 records were reviewed. The mean (SD) age was 26.4 (5.5) years, 289 women (55.6%) attended primary school, and 53% (276/518) had not disclosed their HIV status to their partners. At 25 months post-ART initiation, 278 (53.7%) were LTFU based on routine facility data, with mean time to LTFU of 15.6 months. Retention was 60.2 per 1000 months of observation (pmo) (95% CI: 55.9-64.3) at 12, and 46.3/1000pmo (95% CI: 42.0-50.5) at 25 months. Overall, 237 (55%) women were successfully tracked and interviewed and 43/118 (36.4%) of those who were classified as LTFU at facility level had self-transferred to another facility. The true 25 months post-ART initiation retention after tracking was 71.3% (169/237). Women < 25 years, aHR = 1.71 (95% CI: 1.28-2.30); those with no education, aHR = 5.55 (95% CI: 3.11-9.92), and those who had not disclosed their status to their partners, aHR = 1.59 (95% CI: 1.16-2.19) were more likely to be LTFU. Facilitators for Option B+ retention based on qualitative findings were adequate counselling, disclosure, and the desire to stay alive and raise HIV-free children. Drug side effects, inadequate counselling, stigma, and unsupportive spouses, were barriers to retention in care.Conclusions: Retention under Option B+ is suboptimal and is under-estimated at health facility level. There is need to institute mechanisms for tracking of women across facilities. Retention could be enhanced through strategies to enhance disclosure to partners, targeting the uneducated, and those < 25 years. [ABSTRACT FROM AUTHOR]

Background: Venous insufficiency is a common medical condition affecting up to 50.5% of women and 30.1% of men. Endovenous laser ablation is a minimally invasive procedure that safely and effectively treats reflux involving the great and short saphenous veins., Objective: We sought to present safety and efficacy data of 1171 endovenous laser ablations using the Scripps Clinic endovenous laser therapy (EVLT) protocol., Methods: We conducted an institutional review board-approved, retrospective chart analysis of 1171 endovenous laser ablations performed from March 2007 until February 2011 treated at Scripps Clinic with the 1320-nm neodymium:yttrium-aluminum-garnet laser with 1-month, 6-month, 1-year, and 2-year follow-up data., Results: Our current overall experience is greater than 2000 EVLT procedures. The mean follow-up for this case series of 1171 EVLT procedures (1066 great saphenous veins and 105 short saphenous veins) is 11.4 months with an overall closure success rate of 99.9% for patients not lost to follow-up. There has been no incidence of deep vein thrombosis, permanent nerve damage, or pulmonary embolism related to laser ablation., Limitations: Retrospective chart analysis, investigator bias, patients lost to follow-up, and lack of quality-of-life assessment are limitations., Conclusion: EVLT using a 1320-nm neodymium:yttrium-aluminum-garnet laser appears to be a viable option for venous insufficiency and venous ulceration unresponsive to conservative treatment., (Copyright © 2013 American Academy of Dermatology, Inc. Published by Mosby, Inc. All rights reserved.)

Objective: The objective of this analysis was to develop a survival aggregate score (SAS), including objective and subjective patient-based parameters, and assess its prognostic role after major anatomic resection for non-small cell lung cancer., Methods: A total of 245 patients underwent major lung resections for non-small cell lung cancer with preoperative evaluation of quality of life (Short-Form 36v2 survey) and complete follow-up. The Cox multivariable regression and bootstrap analyses were used to identify prognostic factors of overall servival, which were weighted to construct the scoring system and summed to generate the SAS., Results: Cox regression analysis showed that the factors negatively associated with overall survival and used to construct the score were 36-item short-form health survey physical component summary score less than 50 (hazard ratio [HR], 1.7; P = .008), aged older than 70 years (HR, 1.9; P = .002), and carbon monoxide lung diffusion capacity less than 70% (HR, 1.7; P = .01). Patients were grouped into 4 risk classes according to their SAS. The 5-year overall survival was 78% in class SAS0, 59% in class SAS1, 42% in class SAS2, and 14% in class SAS3 (log-rank test, P < .0001). SAS maintained its association with overall survival in patients with stages pT1 (log-rank test, P = .01), pT2 (log-rank test, P = .02), or pT3-4 (log-rank test, P = .001), and in those with stages pN0 (log-rank test, P = .0005) or pN1-2 (log-rank test, P = .02). The 5-year cancer-specific survival was 83% in class SAS0, 71% in class SAS1, 63% in class SAS2, and 17% in class SAS3 (log-rank test, P < .0001)., Conclusions: This system may be used to refine stratification of prognosis for clinical and research purposes., (Copyright © 2013 The American Association for Thoracic Surgery. Published by Mosby, Inc. All rights reserved.)

A trans-National Institutes of Health initiative, Nutrition and Dietary Supplement Interventions for Inborn Errors of Metabolism (NDSI-IEM), was launched in 2010 to identify gaps in knowledge regarding the safety and utility of nutritional interventions for the management of inborn errors of metabolism (IEM) that need to be filled with evidence-based research. IEM include inherited biochemical disorders in which specific enzyme defects interfere with the normal metabolism of exogenous (dietary) or endogenous protein, carbohydrate, or fat. For some of these IEM, effective management depends primarily on nutritional interventions. Further research is needed to demonstrate the impact of nutritional interventions on individual health outcomes and on the psychosocial issues identified by patients and their families. A series of meetings and discussions were convened to explore the current United States' funding and regulatory infrastructure and the challenges to the conduct of research for nutritional interventions for the management of IEM. Although the research and regulatory infrastructure are well-established, a collaborative pathway that includes the professional and advocacy rare disease community and federal regulatory and research agencies will be needed to overcome current barriers., (Copyright © 2013. Published by Elsevier Inc. All rights reserved.)