Evidence-based care of children with complex medical needs

2022 ◽  
pp. 326-348
Author(s):  
Nicola Brown ◽  
Donna Waters ◽  
Helen Stasa
BMJ Open ◽  
2021 ◽  
Vol 11 (11) ◽  
pp. e050880
Author(s):  
Matthew P Smeltzer ◽  
Kristen E Howell ◽  
Marsha Treadwell ◽  
Liliana Preiss ◽  
Allison A King ◽  
...  

ObjectivesSickle cell disease (SCD) leads to chronic and acute complications that require specialised care to manage symptoms and optimise clinical results. The National Heart Lung and Blood Institute (NHLBI) evidence-based guidelines assist providers in caring for individuals with SCD, but adoption of these guidelines by providers has not been optimal. The objective of this study was to identify barriers to treating individuals with SCD.MethodsThe SCD Implementation Consortium aimed to investigate the perception and level of comfort of providers regarding evidence-based care by surveying providers in the regions of six clinical centres across the USA, focusing on non-emergency care from the providers’ perspective.ResultsRespondents included 105 providers delivering clinical care for individuals with SCD. Areas of practice were most frequently paediatrics (24%) or haematology/SCD specialist (24%). The majority (77%) reported that they were comfortable managing acute pain episodes while 63% expressed comfort with managing chronic pain. Haematologists and SCD specialists showed higher comfort levels prescribing opioids (100% vs 67%, p=0.004) and managing care with hydroxyurea (90% vs 51%, p=0.005) compared with non-haematology providers. Approximately 33% of providers were unaware of the 2014 NHLBI guidelines. Nearly 63% of providers felt patients’ medical needs were addressed while only 22% felt their mental health needs were met.ConclusionsA substantial number of providers did not know about NHLBI’s SCD care guidelines. Barriers to providing care for patients with SCD were influenced by providers’ specialty, training and practice setting. Increasing provider knowledge could improve hydroxyurea utilisation, pain management and mental health support.


2010 ◽  
Author(s):  
Lauren Brookman-Frazee ◽  
Rachel A. Haine ◽  
Mary J. Baker-Ericzen ◽  
Ann F. Garland

2021 ◽  
Vol 12 ◽  
pp. 215013272199363
Author(s):  
Gabriela D.M. Ruiz Colón ◽  
Bianca Mulaney ◽  
Ruby E. Reed ◽  
Sierra K. Ha ◽  
Victoria Yuan ◽  
...  

The onset of the COVID-19 pandemic and subsequent county shelter-in-place order forced the Cardinal Free Clinics (CFCs), Stanford University’s 2 student-run free clinics, to close in March 2020. As student-run free clinics adhering to university-guided COVID policies, we have not been able to see patients in person since March of 2020. However, the closure of our in-person operations provided our student management team with an opportunity to innovate. In consultation with Stanford’s Telehealth team and educators, we rapidly developed a telehealth clinic model for our patients. We adapted available telehealth guidelines to meet our patient care needs and educational objectives, which manifested in 3 key innovations: reconfigured clinic operations, an evidence-based social needs screen to more effectively assess and address social needs alongside medical needs, and a new telehealth training module for student volunteers. After 6 months of piloting our telehealth services, we believe that these changes have made our services and operations more robust and provided benefit to both our patients and volunteers. Despite an uncertain and evolving public health landscape, we are confident that these developments will strengthen the future operations of the CFCs.


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