Adherence patterns among patients receiving healthcare services in the Muhimbili Sickle Cell Cohort, Tanzania

Abstract Background: Monitoring of patient’s clinical attendance is one of the crucial means that is used to improve adherence to care and treatment among the Sickle Cell Disease (SCD) patients. Adherence to care has been shown to improve health outcomes in SCD patients. However, these benefits cannot be achieved when patients are lost to follow-up to care. Method : We analyzed data on loss to follow up to determine the patterns among sickle cell patients registered at Muhimbili Sickle Cell Cohort (MSC), in Dar es Salaam, Tanzania. Data was aggregated and analysed using R software and Microsoft Excel Spreadsheet. Survival analysis techniques, both non-parametric methods (Kaplan-Meier estimator and Log-rank test) and semi-parametric method (Cox’s proportional hazard model), were used. A p-value of 0.05 was considered significant to make a strong inference of the analysis. Results: 5476 SCD patients were registered at MSC from 2004 to 2016, 3350 (58.13%) were actively participating in clinics while, 2126 (41.87%) were inactive, out of which 35.19% were lost to follow-up. From the survival analysis results, patients who were between 5 to 17 years were more likely to be lost to follow-up than the rest with a hazard ratio of 2.65 times more than those who were above 18 years. Patients with mean cell volume above 77.73 fL and white blood cell above 15.73(10ˆ3/uL) were more likely to be loss to follow-up than those below average. Conclusion: Loss to follow-up is evident in a cohort of patients in long term comprehensive care follow-up. It is, therefore, necessary to design interventions that minimize its impacts. Suggested solutions might include training of the health care workers, more emphasis on newborn screening and advocacy to patients regarding the effect of loss to follow-up.

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Patterns and patient factors associated with loss to follow-up in the Muhimbili sickle cell cohort, Tanzania

BMC Health Services Research ◽

10.1186/s12913-020-05998-6 ◽

2020 ◽

Vol 20 (1) ◽

Author(s):

Upendo Masamu ◽

Raphael Z. Sangeda ◽

Daniel Kandonga ◽

Jesca Ondengo ◽

Flora Ndobho ◽

...

Keyword(s):

Survival Analysis ◽

Sickle Cell ◽

Retention Rate ◽

Clinical Care ◽

Parametric Method ◽

Comprehensive Care ◽

Rank Test ◽

Mean Cell Volume ◽

Loss To Follow Up

Abstract Background Monitoring patient’s clinical attendance is a crucial means of improving retention in care and treatment programmes. Sickle cell patients’ outcomes are improved by participation in comprehensive care programmes, but these benefits cannot be achieved when patients are lost from clinical care. In this study, patients are defined as loss to follow-up when they did not attend clinic for more than 9 months. Precise information on the retention rate and characteristics of those who are not following their clinic appointments is needed to enable the implementation of interventions that will be effective in increasing the retention to care. Method This was a retrospective study involving sickle cell patients registered in the Muhimbili Sickle Cohort in Tanzania. Descriptive and survival analysis techniques both non-parametric methods (Kaplan-Meier estimator and Log-rank test) and semi-parametric method (Cox’s proportional hazard model), were used. A p-value of 0.05 was considered significant to make an inference from the analysis. Results A total of 5476 patients were registered in the cohort from 2004 to 2016. Of these, 3350 (58.13%) were actively participating in clinics, while 2126 (41.87%) were inactive, of which 1927 (35.19%) were loss to follow-up. We used data from 2004 to 2014 because between 2015 and 2016, patients were referred to other government hospitals. From the survival analysis results, pediatric (HR: 14.29,95% CI: 11.0071–18.5768, p < 0.001) and children between 5 and 17 years [HR:2.61,95% CI:2.2324–3.0705, p < 0.001] patients were more likely to be loss to follow-up than the adult (18 and above years) patients. It was found that patients with above averages for hematocrit (HR: 2.38, 95% CI: 1.0076–1.0404, p = 0.0039) or mean cell volume (HR: 4.28, (95% CI: 1.0260–1.0598, p < 0.001) were more likely to be loss to follow-up than their counterparts. Conclusion Loss to follow-up is evident in the cohort of patients in long term comprehensive care. It is, therefore, necessary to design interventions that improve patients’ retention. Suggested solutions include refresher training for health care workers and those responsible for patient follow-up on techniques for retaining patients and comprehensive transition programs to prepare patients who are moving from pediatric to adult clinics.

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Patterns and patient factors associated with loss to follow-up in the Muhimbili Sickle Cell Cohort, Tanzania

10.21203/rs.3.rs-16167/v4 ◽

2020 ◽

Author(s):

Upendo Masamu ◽

Raphael Zozimus Sangeda ◽

Daniel Kandoga ◽

Jesca Ondego ◽

Florah Ndobho ◽

...

Keyword(s):

Survival Analysis ◽

Sickle Cell ◽

Retention Rate ◽

Clinical Care ◽

Comprehensive Care ◽

Rank Test ◽

P Value ◽

Mean Cell Volume ◽

Loss To Follow Up

Abstract Background: Monitoring patient's clinical attendance is a crucial means of improving retention in care and treatment programmes. Sickle cell patients' outcomes are improved by participation in comprehensive care programmes, but these benefits cannot be achieved when patients are lost from clinical care. In this study, patients are defined as loss to follow-up when they did not attend clinic for more than nine months. Precise information on the retention rate and characteristics of those who are not following their clinic appointments is needed to enable the implementation of interventions that will be effective in increasing the retention to care. Method: This was a retrospective study involving sickle cell patients registered in the Muhimbili Sickle Cohort in Tanzania. Descriptive and survival analysis techniques both non-parametric methods (Kaplan-Meier estimator and Log-rank test) and semi-parametric method (Cox’s proportional hazard model), were used. A p-value of 0.05 was considered significant to make an inference from the analysis.Results: A total of 5476 patients were registered in the cohort from 2004 to 2016. Of these, 3350 (58.13%) were actively participating in clinics, while 2126 (41.87%) were inactive, of which 1927 (35.19%) were loss to follow-up. We used data from 2004-2014 because between 2015-2016, patients were referred to other government hospitals. From the survival analysis results, pediatric (HR: 14.29,95% CI: 11.0071-18.5768, p <0.001) and children between 5-17 years [HR:2.61,95% CI:2.2324 - 3.0705, p< 0.001] patients were more likely to be loss to follow-up than the adult (18 and above years) patients. It was found that patients with above averages for hematocrit (HR: 2.38, 95% CI: 1.0076 - 1.0404, p=0.0039) or mean cell volume (HR: 4.28, (95% CI: 1.0260 - 1.0598, p<0.001) were more likely to be loss to follow-up than their counterparts. Conclusion: Loss to follow-up is evident in the cohort of patients in long term comprehensive care. It is, therefore, necessary to design interventions that improve patients’ retention. Suggested solutions include refresher training for health care workers and those responsible for patient follow-up on techniques for retaining patients and comprehensive transition programs to prepare patients who are moving from pediatric to adult clinics

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Patterns and patient factors associated with loss to follow-up in the Muhimbili Sickle Cell Cohort, Tanzania

10.21203/rs.3.rs-16167/v3 ◽

2020 ◽

Author(s):

Upendo Masamu ◽

Raphael Zozimus Sangeda ◽

Daniel Kandoga ◽

Jesca Ondego ◽

Florah Ndobho ◽

...

Keyword(s):

Survival Analysis ◽

Sickle Cell ◽

Retention Rate ◽

Clinical Care ◽

Comprehensive Care ◽

Rank Test ◽

P Value ◽

Mean Cell Volume ◽

Loss To Follow Up

Abstract Background: Monitoring patient's clinical attendance is a crucial means of improving retention in care and treatment programmes. Sickle cell patients' outcomes are improved by participation in comprehensive care programmes, but these benefits cannot be achieved when patients are lost from clinical care. In this study, patients are defined as loss to follow-up when they did not attend clinic for more than nine months. Precise information on the retention rate and characteristics of those who are not following their clinic appointments is needed to enable the implementation of interventions that will be effective in increasing the retention to care. Method: This was a retrospective study involving sickle cell patients registered in the Muhimbili Sickle Cohort in Tanzania. Descriptive and survival analysis techniques both non-parametric methods (Kaplan-Meier estimator and Log-rank test) and semi-parametric method (Cox’s proportional hazard model), were used. A p-value of 0.05 was considered significant to make an inference from the analysis. Results: A total of 5476 patients were registered in the cohort from 2004 to 2016. Of these, 3350 (58.13%) were actively participating in clinics, while 2126 (41.87%) were inactive, of which 1927 (35.19%) were loss to follow-up. We used data from 2004-2014 because between 2015-2016, patients were referred to other government hospitals. From the survival analysis results, pediatric (HR: 14.29,95% CI: 11.0071-18.5768, p <0.001) and children between 5-17 years [HR:2.61,95% CI:2.2324 - 3.0705, p< 0.001] patients were more likely to be loss to follow-up than the adult (18 and above years) patients. It was found that patients with above averages for hematocrit (HR: 2.38, 95% CI: 1.0076 - 1.0404, p=0.0039) or mean cell volume (HR: 4.28, (95% CI: 1.0260 - 1.0598, p<0.001) were more likely to be loss to follow-up than their counterparts. Conclusion: Loss to follow-up is evident in the cohort of patients in long term comprehensive care. It is, therefore, necessary to design interventions that improve patients’ retention. Suggested solutions include refresher training for health care workers and those responsible for patient follow-up on techniques for retaining patients and comprehensive transition programs to prepare patients who are moving from pediatric to adult clinics

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Patterns and patient factors associated with loss to follow-up in the Muhimbili Sickle Cell Cohort, Tanzania

10.21203/rs.3.rs-16167/v2 ◽

2020 ◽

Author(s):

Upendo Masamu ◽

Raphael Zozimus Sangeda ◽

Daniel Kandoga ◽

Jesca Ondego ◽

Florah Ndobho ◽

...

Keyword(s):

Survival Analysis ◽

Sickle Cell ◽

Retention Rate ◽

Clinical Care ◽

Comprehensive Care ◽

Rank Test ◽

P Value ◽

Mean Cell Volume ◽

Loss To Follow Up

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High Hb F level is associated with the risk of cerebral vasculopathy in a cohort of sickle cell children in Mayotte.

10.21203/rs.3.rs-16393/v1 ◽

2020 ◽

Author(s):

Narcisse Elenga ◽

Abdourahim CHAMOUINE ◽

Thoueiba SAANDI ◽

Mathias MUSZLAK ◽

Juliette LARMARAUD ◽

...

Keyword(s):

Survival Analysis ◽

Sickle Cell ◽

Pediatric Patients ◽

Significant Risk ◽

Biological Parameters ◽

Cell Disease ◽

The Mean ◽

Lost To Follow Up ◽

Genetic Modulators

Abstract Background Understanding the genetics underlying the heritable subphenotypes of sickle cell anemia, specific to each population, would be prognostically useful and could inform personalized therapeutics. Methods This study aimed to describe the genetic modulators of sickle cell disease in a cohort of pediatric patients followed in Mayotte between 2007 and 2017. Results We included 190 children with 72% SS, 16% Sβ0-thalassemia and 12% Sβ+ thalassemia. The mean age was 9.5 (1.6-23.4) years; 10% of patients were lost to follow up. The Bantu haplotype was associated with an increase in hospitalizations and transfusions. The alpha-thalassemic mutation was associated with a decrease of hemolysis biological parameters (anemia, reticulocytes), and less cerebral vasculopathy. The SNPs BCL11A rs4671393, BCL11A rs11886868, BCL11A rs1427407 and HMIP rs9399137 were associated with the group of children with HbF> 10%. The survival analysis without occurrence of cerebral vasculopathy showed that the group of patients with HbF> 10% presented a significant risk of early onset of cerebral vasculopathy. Conclusions Although the sub-phenotypes were difficult to clearly distinguish in our study, a genotype-sub-phenotype link is emerging.

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Functional Status and Incidence of Loss to Follow-up after Antiretroviral Therapy Initiation

KnE Life Sciences ◽

10.18502/kls.v0i0.8890 ◽

2021 ◽

Author(s):

Rosita Dewi Ambarwati ◽

Hartati Eko Wardani ◽

Tika Dwi Tama

Keyword(s):

Antiretroviral Therapy ◽

Functional Status ◽

General Hospital ◽

Rank Test ◽

P Value ◽

Hiv Patients ◽

Loss To Follow Up ◽

Cox Proportional Hazard ◽

The Right

Taking medication for lifetime puts Human Immunodeficiency Virus (HIV)-infected patients in challenging situations. The loss to follow-up (LTFU) is a major problem arising from their non-compliance. Information about functional status as a predictor of LTFU is limited. Therefore, this study was aimed to identify the association between the functional status and the incidence of LTFU among HIV patients at Saiful Anwar General Hospital, Indonesia. A retrospective cohort study was conducted in the tropical diseases and infections division of the Saiful Anwar General Hospital by observing 148 HIV patients who were diagnosed in 2015. Data were collected based on existing data in medical records. The log-rank test was used to compare the time of LTFU between groups. Cox proportional hazard was used to determine the effect of functional status after being controlled by other variables. This study found that 65.9% of HIV patients were able to retain on antiretroviral therapy for 39 months. Functional status had a significant association with the time LTFU occurred. Ambulatory patients had a higher risk of experiencing LTFU than working functional status (AHR = 2.289; 95% CI 1.106–4.738; p-value = 0.026). Identifying the patient’s characteristic that has a higher risk of LTFU helps to determine the right strategy to ensure treatment adherence. Keywords: antiretroviral therapy (ART), functional status, HIV, loss to follow-up (LTFU), Indonesia

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Predictors of loss to follow-up in art experienced patients in Nigeria: a 13 year review (2004–2017)

AIDS Research and Therapy ◽

10.1186/s12981-019-0241-3 ◽

2019 ◽

Vol 16 (1) ◽

Author(s):

Ahmad Aliyu ◽

Babatunde Adelekan ◽

Nifarta Andrew ◽

Eunice Ekong ◽

Stephen Dapiap ◽

...

Keyword(s):

Patient Adherence ◽

Cross Sectional Study ◽

Emergency Plan ◽

Cross Sectional ◽

Loss To Follow Up ◽

Viral Loads ◽

Review Period ◽

Lost To Follow Up ◽

Differentiated Care

Abstract Background Expanded access to antiretroviral therapy (ART) leads to improved HIV/AIDS treatment outcomes in Nigeria, however, increasing rates of loss to follow-up among those on ART is threatening optimal standard achievement. Therefore, this retrospective cross-sectional study is aimed at identifying correlates and predictors of loss to follow-up in patients commencing ART in a large HIV program in Nigeria. Methods Records of all patients from 432 US CDC Presidents Emergency Plan for AIDS Relief (PEPFAR) supported facilities across 10 States and FCT who started ART from 2004 to 2017 were used for this study. Bivariate and multivariate analysis of the demographic and clinical parameters of all patients was conducted using STATA version 14 to determine correlates and predictors of loss to follow-up. Results Within the review period, 245,257 patients were ever enrolled on anti-retroviral therapy. 150,191 (61.2%) remained on treatment, 10,960 (4.5%) were transferred out to other facilities, 6926 (2.8%) died, 2139 (0.9%) self-terminated treatment and 75,041 (30.6%) had a loss to follow-up event captured. Males (OR: 1.16), Non-pregnant female (OR: 4.55), Patients on ≥ 3-monthly ARV refills (OR: 1.32), Patients with un-suppressed viral loads on ART (OR: 4.52), patients on adult 2nd line regimen (OR: 1.23) or pediatric on 1st line regimen (OR: 1.70) were significantly more likely to be lost to follow-up. Conclusion Despite increasing access to anti-retroviral therapy, loss to follow-up is still a challenge in the HIV program in Nigeria. Differentiated care approaches that will focus on males, non-pregnant females and paediatrics is encouraged. Reducing months of Anti-retroviral drug refill to less than 3 months is advocated for increased patient adherence.

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Prospective cohort study of Kaposi sarcoma treated under real-world conditions in Malawi.

Journal of Clinical Oncology ◽

10.1200/jco.2021.39.15_suppl.11569 ◽

2021 ◽

Vol 39 (15_suppl) ◽

pp. 11569-11569

Author(s):

Edwards Kasonkanji ◽

Yolanda Gondwe ◽

Morgan Dewey ◽

Joe Gumulira ◽

Matthew Painschab ◽

...

Keyword(s):

Cohort Study ◽

Kaposi Sarcoma ◽

Median Number ◽

Sub Saharan Africa ◽

Worst Case ◽

Loss To Follow Up ◽

Presenting Symptoms ◽

Grade 3 ◽

Lost To Follow Up

11569 Background: Kaposi sarcoma (KS) is the leading cancer in Malawi (34% of cancers). Outside of clinical trials, prospective KS studies from sub-Saharan Africa (SSA) are few and limited by loss to follow up. We conducted a prospective KS cohort study of standard of care bleomycin/vincristine (BV) at Lighthouse HIV clinic, in Lilongwe, Malawi. Methods: We enrolled pathologically confirmed, newly diagnosed, HIV+ KS patients from Feb 2017 to Jun 2019. We collected clinical and treatment characteristics, toxicity, and outcomes of KS with follow-up censored Jun 2020. Patients were treated with bleomycin (25 mg/m2) and vincristine (0.4 mg/m2) every 14 days for a planned maximum of 16 cycles. STATA v13.0 was used to calculate descriptive statistics and Kaplan Meier survival analysis. Toxicity was graded using NCI CTCAE v5.0. Results: We enrolled 138 participants, median age 36 (IQR 32-44) and 110 (80%) male. By ACTG staging, 107 (78%) were T1 (tumour severity), 46 (33%) were S1 (illness severity) and 46 (33%) had Karnofsky performance status ≤70. Presenting symptoms included edema in 69 (53%), visceral disease in 9 (7%), and oral involvement in 43 (33%). Prior to KS diagnosis, 70 (51%) participants were aware of being HIV+ for median 17 months (IQR 6-60) and had been on ART for median 16 months (IQR 6-60). Median CD4 count was 197 (IQR 99-339), median HIV-viral load was 2.6 log copies/mL (IQR 1.6 – 4.8) and 57% were HIV-suppressed ( < 1000 HIV copies/ml). The median number of cycles was 16 (IQR 7-16). 62 (45%) participants missed at least one dose due to stock out. Amongst patients with missed doses, the median number was 3 (IQR 2-4) for bleomycin and 2 (IQR 1-3) for vincristine. 14 (10%) participants experienced at least one reduced dose due to toxicity. 5 (4%) participants suffered grade ≥3 anaemia, 13 (9%) grade ≥3 neutropenia, and one participant had grade 4 bleomycin-induced dermatitis. There was no reported grade ≥3 bleomycin lung toxicity or vincristine-induced neuropathy. Of 115 evaluable participants, responses at the end of therapy were: complete response in 52 (45%), partial response in 27 (23%) stable disease in 5 (4%), and progressive disease in 31 (28%). Median duration of follow-up was 20 months. At censoring, 69 (50%) were alive, 36 (26%) dead, and 33 (24%) lost to follow-up. Overall survival is shown Table as crude and worst-case scenario; worst-case assumes all participants lost to follow up died. Conclusions: Here, we present one of the most complete characterizations of KS presentation and treatment from SSA. As in other studies from the region, the majority of patients presented with advanced disease, chemotherapy stock-outs and loss to follow up were common, and mortality was high. Studies are planned to understand the virologic characteristics, improve therapies, and better implement existing therapies.[Table: see text]

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How to Find Patients Who are 'Lost to Follow-up'

Bulletin of The Royal College of Surgeons of England ◽

10.1308/147363510x487795 ◽

2010 ◽

Vol 92 (3) ◽

pp. 98-101 ◽

Cited By ~ 5

Author(s):

LC Biant ◽

VK Eswaramoorthy ◽

RE Field

Keyword(s):

Surgical Interventions ◽

Loss To Follow Up ◽

Medical Interventions ◽

Follow Up Studies ◽

Long Term Follow Up ◽

Lost To Follow Up

Long-term surveillance of patients is necessary to ascertain the outcome of medical interventions. The rate of 'loss to follow-up' is the largest controllable variable in long-term follow-up studies. Such surveillance programmes are of particular importance to surgical interventions as differences between techniques or implants may take years to become apparent.

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Strategy to track double-J stents placed during COVID-19 using smartphone-based stent tracker application to prevent forgotten double-J stent in a high-volume centre: a smart solution

African Journal of Urology ◽

10.1186/s12301-021-00212-3 ◽

2021 ◽

Vol 27 (1) ◽

Author(s):

Abhirudra Mulay ◽

Rohit Kapoor ◽

Sonu Sharma ◽

Shashikant Asabe ◽

Hareesh Belagali ◽

...

Keyword(s):

Data Storage ◽

High Volume ◽

Daily Lives ◽

Loss To Follow Up ◽

Regional Language ◽

Contagious Nature ◽

Double J Stent ◽

Paediatric Age ◽

Lost To Follow Up

Abstract Background Forgotten or retained (double-J) DJ stents may lead to several complications. Management of retained DJ stents poses a challenge for urologists not just surgically but also medicolegally and adds to the economic burden of the patient. Difficulty in follow-up for patients due to the contagious nature of COVID-19 and several restrictions posed in the form of lockdown. Smartphones today have become an integral part of our daily lives providing a convenient and reliable platform for data storage and access. Methods All patients requiring placement of DJ stents and agreeing to enrol in the study were registered on the application over the physicians smartphone. SMSs regarding dates for removal of stent and follow-up with the literature regarding stent care were sent to the patients in their regional language. Results A total of 100 patients were stented during this period of 3 months. Mean age was 42.61 years with three patients of paediatric age group. Mean duration of stent was 6 weeks. All patients received periodic messages (average 3) regarding follow-up and date for stent removal. 3%(n = 3) patients were delayed for follow-up; 2% (n = 2) patients lost to follow-up, compared to a 9% to 10% loss to follow-up in patients followed up only on paper discharges in our department previously. Conclusion It significantly reduced the number of physical visits of the patient to the hospital and provided a more streamlined tracking of the indwelling stents for the user; patient compliance was found to be almost 98%; being cloud based (android/iOS), it was easily accessible to the user; and with the option of sharing the account details, the patient record could be accessed by several residents from their individual devices, which significantly reduced loss to follow-up rates from 9 to 2%.

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