ArticleBMC health services research2020
Patterns and patient factors associated with loss to follow-up in the Muhimbili sickle cell cohort, Tanzania.
Article in BMC health services research, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Genetic Polymorphisms Associated with Fetal Hemoglobin (HbF) Levels and F-Cell Numbers: A Systematic Review of Genome-Wide Association Studies.International journal of molecular sciences · 2024Pooled it
- Evaluation of Implementation of Newborn Screening for Sickle Cell Disease Program in Selected Hospitals in Dar es Salaam, Tanzania.International journal of neonatal screening · 2026Article
- Loss to Follow-Up Rates Among Pediatric Sickle Cell Disease Patients in an Ophthalmology Clinic.Journal of vitreoretinal diseases · 2026Article
- Improved Biorepository to Support Sickle Cell Disease Genomics and Clinical Research: A Practical Approach to Link Patient Data and Biospecimens from Muhimbili Sickle Cell Program, Tanzania.Biopreservation and biobanking · 2024Article
- Article
- Development of the sickle Pan-African research consortium registry in Tanzania: opportunity to harness data science for sickle cell disease.Frontiers in hematology · 2023Article
- Prevalence of Hemoglobin-S and Baseline Level of Knowledge on Sickle Cell Disease Among Pregnant Women Attending Antenatal Clinics in Dar-Es-Salaam, Tanzania.Frontiers in genetics · 2022Article
- Promoting access of hydroxyurea to sickle cell disease individuals: Time to make it an essential medicine.F1000Research · 2022Article
Corrections and comments
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Authors and funding
9 authors.
Funding
Abstract
backgroundMonitoring 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.
methodThis 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.
resultsA 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.
conclusionLoss 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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