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

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

10.21203/rs.3.rs-16167/v1 ◽

2020 ◽

Author(s):

Upendo Masamu ◽

Raphael Zozimus Sangeda ◽

Daniel Kandoga ◽

Jesca Ondego ◽

Florah Ndobho ◽

...

Keyword(s):

Survival Analysis ◽

Sickle Cell ◽

Parametric Method ◽

Healthcare Services ◽

Rank Test ◽

P Value ◽

Mean Cell Volume ◽

Loss To Follow Up ◽

Lost To Follow Up

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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Impact of a child -friendly clinic on retention of HIV-infected children in care: an intervention study

Nigerian Journal of Paediatrics ◽

10.4314/njp.v44i4.1 ◽

1970 ◽

Vol 44 (4) ◽

pp. 175-179

Author(s):

OR Ugwu

Keyword(s):

Highly Active Antiretroviral Therapy ◽

Retention Rate ◽

Retention In Care ◽

Hiv Care ◽

Satisfaction Survey ◽

Loss To Follow Up ◽

Child Friendly ◽

Children In Care ◽

The Impact

Background: Certain researchers have reported that a child-friendly clinic may improve patient/caregiver satisfaction at clinic attendance. This could serve as an innovation for reducing loss-to-follow up and increasing retention in care.Aim: To assess the impact of making the clinic more child-friendly on clinic experience, retention in care and loss-to-follow up of HIV -infected children.Method: The study was carried out in three phases. Phase one was a satisfaction survey to find out the patient/caregivers’ satisfaction of the clinic environment and services provided using a selfadministered questionnaire. Phase two was the creation of the childfriendly environment and phase three was a post-provision of child-friendly clinic satisfaction survey. The loss-to-follow up rate (failure to return to clinic ≥3months after the last scheduled clinic appointment in a child not known to be dead or transferred out of the facility) and retention rate (remaining alive and receiving highly active antiretroviral therapy) were also determined before and after setting up the childfriendly clinic.Results: There were 146 respondents before the study and 206 respondents after the intervention. The retention rate increased from 62.5% to 82% (p=0.02), while the loss-to-follow up rate dropped from 27.7% to 7.0% (p=0.00).Conclusion: Making the clinic area child-friendly can impact greatly on HIV care by improving patient satisfaction and retention of HIVinfected children in care and reducing loss-to-follow up.Key words: HIV, child-friendly environment, retention in care, loss to follow-up.

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A North American Experience Of Hemoglobin SC Disease, Its Complications, and Management

Blood ◽

10.1182/blood.v122.21.2221.2221 ◽

2013 ◽

Vol 122 (21) ◽

pp. 2221-2221 ◽

Cited By ~ 1

Author(s):

Veronique Naessens ◽

Richard Ward ◽

Kevin H.M. Kuo

Keyword(s):

Sickle Cell Disease ◽

Avascular Necrosis ◽

Sickle Cell ◽

Care Center ◽

Comprehensive Care ◽

Acute Chest Syndrome ◽

Cell Disease ◽

Baseline Hemoglobin ◽

Hemoglobin Sc Disease

Background The phenotype of hemoglobin SC (HbSC) disease is distinct from sickle cell anemia (SCA) (HbSS and S/b0) but management of adults is mostly derived from studies of the latter group. Longitudinal observational studies on the complications and outcomes of hemoglobin SC disease are largely confined to centers outside North America. The unique ethnic composition of our cohort, consisting of mostly Western Africans and West Indians, permits further characterization of the HbSC phenotype. Objective to describe the baseline characteristics and long-term complications of a cohort of adult HbSC patients followed in a Canadian sickle cell comprehensive care center. Methods A retrospective observational cohort study was conducted on all adult patients with HbSC disease attending a sickle cell comprehensive care center in Toronto, Canada from 1994 to 2013. Baseline demographics, acute and chronic complications attributable to sickle cell disease, and laboratory data were collected. Medians were used to describe continuous variables, while percentages or ratios for categorical variables. Logistic regression was used to examine factors influencing the main clinical complications. Results 104 patients were included in the analysis, comprising of 38.5% males and 61.5% females. Median length of follow-up was 3.5 years (1 - 19) and median age at last recorded visit was 35 years (18 - 68). Median baseline hemoglobin was 119 g/L (82 - 153 g/L), hematocrit 0.340 (0.250 - 0.440), and fetal hemoglobin (HbF) fraction 1% (0 - 7.7%). Most frequent complications encountered were retinopathy (55.8%) and symptomatic avascular necrosis (27.9%), followed by painful vaso-occlusive crises requiring emergency room visit (23.1%). Presence of retinopathy was associated with higher baseline hemoglobin (OR 2.72 for every 10 g/L of hemoglobin, p = 0.037) and older age (OR 2.72 for every decade, p < 0.001). Acute chest syndrome (7.7%), priapism (7.5% of men), and renal involvement (8.2%), were less common than reported in the literature, while the rates of venous thromboembolism (8.7%), symptomatic infarctive or hemorrhagic stroke (2.9%) were slightly more common. Median right ventricular systolic pressure on 2D-transthoracic echocardiogram was 29 mmHg (17 – 43 mmHg). No patient underwent a right heart catheterization. Two patients died from septic shock, both at the age of 29. Disease-modifying therapy most often consisted of hydroxyurea (28.8%), followed by exchange transfusion (6.7%) and phlebotomies (5.8%). Hydroxyurea significantly increased the median HbF fraction (from 1% to 2.75%, p = 0.004 by related-samples Wilcoxon signed rank test). Conclusion In this large North American cohort of adult patients, we have again shown that HbSC disease is not as benign as traditionally thought. As such, patients with HbSC disease warrant similar follow-up to that provided to SCA. Retinopathy, avascular necrosis and painful vaso-occlusive crises were the most common complications in our study, albeit lower than in other reported cohorts. The frequent use of hydroxyurea in this cohort is quite unique compared to other sickle cell comprehensive care centers reported in the literature. However, therapeutic phlebotomy is less often used compared to the European experience. We also observed a lower frequency of retinopathy, avascular necrosis, painful vaso-occlusive crises, priapism and acute chest syndrome. Whether this observation is due to hydroxyurea use or to other genetic or environmental factors remains to be determined. Further studies are also required to develop a more evidence-based therapeutic strategy for this genotype of Sickle Cell Disease. Disclosures: No relevant conflicts of interest to declare.

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Sorafenib in hepatocellular carcinoma (HCC): Is there a role for starting patients on a total daily dose of 400mg daily?

Journal of Clinical Oncology ◽

10.1200/jco.2014.32.3_suppl.364 ◽

2014 ◽

Vol 32 (3_suppl) ◽

pp. 364-364

Author(s):

Olugbenga Olanrele Olowokure ◽

Brian Singeltary ◽

Abhimanyu Ghose, ◽

Michelle Lynn Mierzwa ◽

Tahir Latif ◽

...

Keyword(s):

Asia Pacific ◽

Locoregional Therapy ◽

Total Daily Dose ◽

Rank Test ◽

Loss To Follow Up ◽

Kaplan Meier ◽

Daily Dose ◽

Ecog Ps ◽

The Impact

364 Background: S at a starting daily dose of 400mg twice daily (800mg) is considered the standard systemic therapy for HCC, in pts with well preserved liver function and advanced stage HCC, based largely on data reported by the SHARP and Asia-pacific trials. Due to complaints regarding SE and reluctance to start at full dose, we decide to retrospectively look at our HCC data base. This single institution retrospective review, evaluated the impact of starting S at a 400mg daily (200mg twice daily). Methods: From 06/01/09-09/01/13, using ICD code 155, newly registered advanced HCC pts, ECOG PS 2, Childs Pugh (CP) class A or B who were started on S 400mg daily were identified : CT scans and AFP levels were followed. PFS was estimated from the date of commencing therapy to date of progression or death if this occurred first and OS was estimated from date of commencing therapy until date of death or loss to follow up. Kaplan Meier survival estimates were obtained with 95% (CI). Log rank test was used to compare the PFS according to CP class. Results: 33 pts (M:F, 21:12), mean age of 59.8y (SD: 12.40) met inclusion criteria, the median duration (MD) of follow up was 8.7 m ( 1.07-27.43). 23(69.7%) pts were CP-A. 70% had abnormal AFP and this decreased > 50% from baseline in 8 (35%). 96% of the pts received prior locoregional therapy in CP-A and 50% in CP-B. Initial dose tolerance was observed in 23 (69.7%) pts. 16 pts (48.5%) needed dose reduction (CP-A: 56.5%, CP-B: 30%) while 19 (57.6%) pts were able to escalate their dose at some point (CP-A: 60.9%, CP-B: 50%). MD of (400mg/d) was 3m prior to any adjustment (CP-A: 3, CP-B: 2). Mean duration of S use was 8.88m (A-10.04, B-6.2). During follow up, 26 pts had POD and 24 pts died. There was no difference in PFS between CP-A and B and following POD 10/19 evaluable pts continued S. OS was 79 % (95%CI: 61-89%) at 3m, 67% (95%CI: 48-80%) at 6m, 50% (95%CI: 32-66%) at 9m, and 40% (95%CI: 23-57%) at 12m. The most common reported toxicities were fatigue 87.5%, diarrhea 53.1% and HFS/rash 43.8% Conclusions: In this cohort of pts S started at 400mg/d did not seem to result in worse outcomes compared to historic controls possibly due to the ability to tolerate therapy for a longer period of time.

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Impact of Patient-Held Record on Knowledge at 1-Year Follow-Up for Glaucoma Patients: Single-Center Randomized Controlled Trial

European Journal of Ophthalmology ◽

10.5301/ejo.5000939 ◽

2017 ◽

Vol 27 (5) ◽

pp. 542-547 ◽

Cited By ~ 1

Author(s):

Marina Forbes ◽

Helen Fairlamb ◽

Leon Jonker

Keyword(s):

Randomized Controlled Trial ◽

Regression Analysis ◽

Retention Rate ◽

Controlled Trial ◽

Clinical Care ◽

Linear Regression Analysis ◽

Educational Background ◽

Randomized Controlled ◽

Validated Questionnaire

Purpose To assess whether provision of a personalized patient-held eye health summary (glaucoma personal record) improves patients’ knowledge of glaucoma at 1-year follow-up. The National Institute for Clinical Excellence has recommended such an approach to ascertain if this may ultimately help slow disease progression. Methods Recruited patients, newly diagnosed with glaucoma conditions, were randomly allocated to receive standard clinical care or an additional glaucoma personal record, detailing the current state of each individual's eye condition. Mann-Whitney U test was applied for comparison of knowledge scores between groups at 1-year follow-up, using a validated questionnaire. Multiple linear regression analysis was applied to detect any factors significantly associated with a difference in glaucoma knowledge. Results A total of 122 patients were recruited; 57 controls and 44 intervention patients were tested for their glaucoma knowledge, equating to 83% retention rate. Out of a maximum available 100% converted score, the median scores were 58% and 53% for the control and intervention arm, respectively (p = 0.85). Regression analysis showed that age (p = 0.015) had a negative association and level of education (p = 0.002) had a positive association with glaucoma knowledge. Conclusions The glaucoma personal record does not impact on a patient's knowledge of glaucoma in either a positive or negative way. Other approaches to improve health literacy among glaucoma patients, particularly for patients who are elderly or have a limited educational background, must be considered to improve patients’ awareness and knowledge of their own condition. Trial registration International Standard Randomized Controlled Trial Number Registry: ISRCTN41306818.

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Loss to follow-up of cancer patients in the poorest district of the United States.

Journal of Clinical Oncology ◽

10.1200/jco.2012.30.15_suppl.6123 ◽

2012 ◽

Vol 30 (15_suppl) ◽

pp. 6123-6123 ◽

Cited By ~ 1

Author(s):

Antranik Mangardich ◽

Aleksandra Mamorska-Dyga ◽

Doru Paul ◽

Ghulam Khan ◽

Svetlana Vassel ◽

...

Keyword(s):

Cancer Patients ◽

Retention Rate ◽

Mental Health Center ◽

The United States ◽

Stage At Diagnosis ◽

South Bronx ◽

Loss To Follow Up ◽

Significant Difference ◽

Cancer Types

6123 Background: Loss to follow-up (LFU) of cancer patients is a serious dilemma, and has only been narrowly studied. Lincoln Medical and Mental Health Center (LMMHC) serves South Bronx (SB), the poorest district in the nation. The purpose of this study was to assess rates of LFU and correlate it with age, sex, ethnicity, race, cancer types, and stage at diagnosis. Methods: We collected data from 1,552 patients diagnosed with invasive cancer in LMMHC between 2006-2010. The data collected were age, sex, ethnicity, race, type of cancer, stage, LFU, treatment, and vital status. Results: From the 1,552 patients, roughly 25 % were LFU, with 50% receiving some initial form of treatment. The remaining percentages are shown below (Table). A higher rate of LFU was with patients younger than 65 (OR: 1.38, 95% CI: 1.08-1.76). There was no correlation between sex and LFU. Non-Hispanics were more likely to be LFU compared to Hispanics (OR: 1.39, 95% CI: 1.07 – 1.8). Blacks were more likely to be LFU compared to non-Blacks (OR: 1.43, 95% CI: 1.12–1.82). There was no significance between LFU and stage at diagnosis. Looking at cancer specific data, colon cancer (C) and head and neck cancers (HN) had the highest percentage of LFU (30% each). There was higher LFU rate for C compared to breast cancer (B) (OR: 1.7, 95% CI: 1.03-2.8), prostate cancer (P) (OR: 1.88, 95% CI: 1.18-3.02), and lung cancer (L) (OR: 1.64 95% CI: 0.94- 2.8). HN patients were more likely LFU compared to B (OR: 2.4, 95% CI: 1.13-5.2), P (OR: 2.69, 95 % CI: 1.28-5.68), and L (OR: 2.3, 95% CI: 1.05-5.19) patients. There was no significant difference between C and HN patients in respect to LFU. Conclusions: In the SB, LFU rates are related to age, ethnicity, race, and type of cancer. Younger patients, blacks, non-Hispanics, and those with C and HN cancers were most likely to be LFU, the latter likely due to the lack of a HN surgeon at LMMHC. We hope that with focus on race, ethnicity, and cancer-specific disparities in LFU rates, we will improve the retention rate of our cancer patients in the future. [Table: see text]

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OP0093 RETENTION RATE OF IL-1 INHIBITORS IN PATIENTS WITH SCHNITZLER’S SYNDROME

Annals of the Rheumatic Diseases ◽

10.1136/annrheumdis-2021-eular.3071 ◽

2021 ◽

Vol 80 (Suppl 1) ◽

pp. 51-52

Author(s):

F. Crisafulli ◽

A. Vitale ◽

C. Gaggiano ◽

L. Dagna ◽

G. Cavalli ◽

...

Keyword(s):

Median Duration ◽

Biological Treatment ◽

Retention Rate ◽

Rank Test ◽

Severe Allergic Reaction ◽

Optimal Dosage ◽

Line Treatment ◽

Significant Difference ◽

Schnitzler’S Syndrome

Background:Schnitzler’s syndrome is an autoinflammatory disease characterized by monoclonal gammopathy and recurrent episodes of urticaria accompanied by clinical and laboratory signs of acute inflammation. Interleukin (IL)-1 inhibitors proved to be useful in the treatment, but data on long-term safety and efficacy of these agents are sparse.Objectives:To evaluate the retention rate of IL-1 inhibitors in patients with Schnitzler’s Syndrome.Methods:Retrospective analysis of an Italian multicenter cohort (9 Centers). All patients fulfilled Strasbourg diagnostic criteria. Data are expressed as median [IQR].Results:We identified 15 patients (8 females, 7 males) who received a total of 24 treatment courses with IL-1 inhibitor treatment (16 anakinra and 8 canakinumab) between January 2001 and December 2019, with a median treatment duration of 19 months [8.5-51.3]. Median age at diagnosis was 64.0 years [56.0-72.5] and median follow up was 5.0 years [2.0-8.0]. Before the biological treatment, all patients were treated with corticosteroids and 11 with at least one conventional synthetic disease-modifying antirheumatic drug (csDMARD): methotrexate (5), colchicine (5), cyclosporine (3), azathioprine (1), mycophenolate mofetil (1), cyclophosphamide (1).Fifteen patients received 16 courses of Anakinra, which was the 1st line biological treatment in 14 patients. Seven patients continued it with benefit, while 7 patients discontinued it: 3 for secondary inefficacy; 3 for adverse events (2 injection site reactions, 1 severe allergic reaction); 1 for secondary inefficacy and leukopenia. Anakinra was used as 2nd line treatment in 1 case (after tocilizumab failure); in 1 patient anakinra was resumed after temporary discontinuation and an attempt with infliximab. One patient died for multiple myeloma progression while on treatment with anakinra. The median duration of the courses with anakinra was 20.0 months [6.0-58.3].Seven patients received 8 courses of canakinumab (150 mg/8weeks in 5 cases and 150 mg/4weeks in 3). In 5 cases the drug was administered as 2nd line biological treatment (after anakinra failure) and in 2 cases as 3rd line treatment (1 after tocilizumab and anakinra failures and 1 after anakinra and adalimumab failure). In 1 patient, it was resumed after temporary discontinuation and an attempt with etanercept. One patient died while on treatment with canakinumab due to a presumably unrelated adverse event. The median duration of canakinumab treatment courses was 19.0 months [13.5-31.0].At last follow-up visit, all patients were on treatment with an IL-1 inhibitor: 8 with anakinra (7 at the dosage of 100 mg/day, 1 at the dosage of 200 mg/day) and 7 with canakinumab (2 at the dosage of 150 mg/8 weeks, 4 at the dosage of 150 mg/4 weeks and 1 at the dosage of 300 mg/4 weeks). Notably, in 3 patients the dosage of canakinumab was increased since the start of the treatment.Among 9 patients who were on treatment with prednisone at the start of the last IL-1 inhibitor, the prednisone median dose was 12.5 mg/day [10.0-18.8] while at the last follow-up visit it was 5.0 mg/day [0-7.5] (p= 0.02).The retention rate of IL-1 inhibitors was 73.4% [SE 9.4] at 1 year and 63.6% [SE 10.4] at 2 years (Figure 1a). There was no significant difference between the retention rate of anakinra (at 1 year: 67.0% [12.2]; at 2 years: 59.6% [12.9]) and canakinumab (at 1 year: 85.7% [13.2]; at 2 years 71.4% [17.1]) (log-rank test: p=0.41) (Figure 1b).Figure 1.a) Retention rate of IL-1 inhibitors (24 courses); b) Retention rate of canakinumab (8 courses) and anakinra (16 courses).Conclusion:In this multicentric cohort of patients affected by Schnitzler’s syndrome, the treatment with IL-1 inhibitors as 1st, 2nd or 3rd line biological treatment permitted a good disease control and corticosteroid reduction in patients who did not respond to csDMARDs and/or to prior other biological DMARDs. The optimal dosage of these drugs needs to be tailored for every patient.Acknowledgements:AIDA NetworkDisclosure of Interests:Francesca Crisafulli: None declared, Antonio Vitale: None declared, Carla Gaggiano: None declared, Lorenzo Dagna: None declared, Giulio Cavalli Speakers bureau: SOBI, Novartis, Paid instructor for: SOBI, Novartis, Consultant of: SOBI, Novartis, Rolando Cimaz: None declared, Ombretta Viapiana: None declared, Florenzo Iannone: None declared, Giuseppe Lopalco: None declared, Roberto Bortolotti: None declared, Masen Abdel Jaber: None declared, Carlomaurizio Montecucco: None declared, Sara Monti: None declared, Silvia Balduzzi: None declared, Giacomo Emmi: None declared, Paolo Airò: None declared, Franco Franceschini: None declared, Luca Cantarini Speakers bureau: SOBI, Novartis, Paid instructor for: SOBI, Grant/research support from: SOBI, Novartis, Micol Frassi: None declared

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