Healthcare for patients with advanced chronic kidney disease (ACKD) on conservative treatment very often poses healthcare problems that are difficult to solve. At the end of 2011, we began a program based on the care and monitoring of these patients by Primary Care Teams. ACKD patients who opted for conservative treatment were offered the chance to be cared for mainly at home by the Primary Care doctor and nurse, under the coordination of the Palliative Care Unit and the Nephrology Department. During 2012, 2013, and 2014, 76 patients received treatment in this program (mean age: 81 years; mean Charlson age-comorbidity index: 10, and mean glomerular filtration rate: 12.4 mL/min/1.73 m2). The median patient follow-up time (until death or until 31 December 2014) was 165 days. During this period, 51% of patients did not have to visit the hospital’s emergency department and 58% did not require hospitalization. Forty-eight of the 76 patients died after a median time of 135 days in the program; 24 (50%) died at home. Our experience indicates that with the support of the Palliative Care Unit and the Nephrology Department, ACKD patients who are not dialysis candidates may be monitored at home by Primary Care Teams.

Amyotrophic lateral sclerosis (ALS) is a fatal, neurodegenerative motor neuron disease. Although an early diagnosis is crucial to provide adequate care and improve survival, patients with ALS experience a significant diagnostic delay. This study aimed to use real-world data to describe the clinical profile and timing between symptom onset, diagnosis, and relevant outcomes in ALS. Retrospective and multicenter study in 5 representative hospitals and Primary Care services in the SESCAM Healthcare Network (Castilla-La Mancha, Spain). Using Natural Language Processing (NLP), the clinical information in electronic health records of all patients with ALS was extracted between January 2014 and December 2018. From a source population of all individuals attended in the participating hospitals, 250 ALS patients were identified (61.6% male, mean age 64.7 years). Of these, 64% had spinal and 36% bulbar ALS. For most defining symptoms, including dyspnea, dysarthria, dysphagia and fasciculations, the overall diagnostic delay from symptom onset was 11 (6–18) months. Prior to diagnosis, only 38.8% of patients had visited the neurologist. In a median post-diagnosis follow-up of 25 months, 52% underwent gastrostomy, 64% non-invasive ventilation, 16.4% tracheostomy, and 87.6% riluzole treatment; these were more commonly reported (all Ps < 0.05) and showed greater probability of occurrence (all Ps < 0.03) in bulbar ALS. Our results highlight the diagnostic delay in ALS and revealed differences in the clinical characteristics and occurrence of major disease-specific events across ALS subtypes. NLP holds great promise for its application in the wider context of rare neurological diseases.

Non-CDC High Risk 4316 (88.5%) 16 (0.3%) 171 (3.5%) 17 (0.4%) 243 (5.6%) TOTAL 4877 21 (0.4%) 248 (5.0%) 22 (0.5%) 309 (6.3%) *CDC High Risk was determined by screening questions only, other CDC recommended screening including physical assessment fi ndings, hemodilution etc. were not included in this analysis. ** p< .000121/4877 (0.4%) potential donors tested HIV-1/2 antibody positive. The incidence in the CDC-HR group was 5/561 (0.9%) vs.16/4316 (0.3%) in the Non-CDC HR group (p= 0.15). The incidence of HCV+ tests in the CDC-HR group was 77/561 (13.7%) as compared to 171/4316 (3.5%) in the Non-CDC-HR group (p<.0001). The incidence of HBsAg + tests in the CDC-HR was 0.9% vs. 0.4% in the Non-CDC HR group (p=.18). The incidence of HB Ab+ tests in the CDC HR group was 66/561 (12%) vs. 243/4316 (5.6%) in the Non-CDC HR group (P<.0001). Summary and Conclusions: There was a trend for higher incidence of positive serology for all tests in the CDC HR group but this was signifi cant only for HCV and HB c Ab. The majority of positive cases for each of the tests were in the non High Risk group. These data need further confi rmation and should be considered when contemplating routine prospective NAT testing for potential organ donors. Considerations of logistics, cost and potential inadvertent loss of donors and organs associated with prospective NAT testing need to be weighed against the current low incidence of disease transmission.

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