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Current state of neurodevelopmental and psychosocial care practices for paediatric patients with ventricular assist devices: an Advanced Cardiac Therapies Improving Outcomes Network and Cardiac Neurodevelopmental Outcome Collaborative collaborative survey
No full textPURPOSE: Paediatric patients with heart failure requiring ventricular assist devices are at heightened risk of neurologic injury and psychosocial adjustment challenges, resulting in a need for neurodevelopmental and psychosocial support following device placement. Through a descriptive survey developed in collaboration by the Advanced Cardiac Therapies Improving Outcomes Network and the Cardiac Neurodevelopmental Outcome Collaborative, the present study aimed to characterise current neurodevelopmental and psychosocial care practices for paediatric patients with ventricular assist devices. METHOD: Members of both learning networks developed a 25-item electronic survey assessing neurodevelopmental and psychosocial care practices specific to paediatric ventricular assist device patients. The survey was sent to Advanced Cardiac Therapies Improving Outcomes Network site primary investigators and co-primary investigators via email. RESULTS: Of the 63 eligible sites contacted, responses were received from 24 unique North and South American cardiology centres. Access to neurodevelopmental providers, referral practices, and family neurodevelopmental education varied across sites. Inpatient neurodevelopmental care consults were available at many centres, as were inpatient family support services. Over half of heart centres had outpatient neurodevelopmental testing and individual psychotherapy services available to patients with ventricular assist devices, though few centres had outpatient group psychotherapy (12.5%) or parent support groups (16.7%) available. Barriers to inpatient and outpatient neurodevelopmental care included limited access to neurodevelopmental providers and parent/provider focus on the child\u27s medical status. CONCLUSIONS: Paediatric patients with ventricular assist devices often have access to neurodevelopmental providers in the inpatient setting, though supports vary by centre. Strengthening family neurodevelopmental education, referral processes, and family-centred psychosocial services may improve current neurodevelopmental/psychosocial care for paediatric ventricular assist device patients
Phenylalanine hydroxylase deficiency diagnosis and management: A 2023 evidence-based clinical guideline of the American College of Medical Genetics and Genomics (ACMG)
No full textPURPOSE: To replace an existing clinical practice guideline for the diagnosis and management of phenylalanine hydroxylase (PAH) deficiency. METHODS: The PAH Deficiency Guideline Workgroup used the Grading of Recommendations Assessment, Development, and Evaluation evidence-to-decision framework to develop evidence summaries and practice recommendations based on the recent American College of Medical Genetics and Genomics systematic review. RESULTS: Many recommendations from the 2014 PAH practice guideline are recognized as standard of care in this evidence-based guideline. Key recommendations from the previous guideline that were not supported by strong evidence are now strongly supported; (1) treatment for PAH deficiency should be lifelong for individuals with untreated phenylalanine (Phe) levels \u3e360 μmol/L, (2) individuals with lifelong Phe levels ≤360 μmol/L have better intellectual outcomes than those who do not, (3) achieving Phe levels ≤360 μmol/L before conception is strongly recommended to prevent pregnancy complications and negative outcomes for the offspring, and (4) genetic testing for PAH variants is recommended at birth to confirm diagnosis and guide therapy. CONCLUSION: We strongly recommend lifelong maintenance of Phe ≤360 μmol/L (using plasma or whole blood) for optimal intellectual outcomes and for reduced teratogenicity, utilizing all available and necessary dietary, pharmaceutical, and patient-educational modalities
Summary of: Feasibility of Continuous Home Monitoring of Particulate Matter and Lung Function in Patients with Chronic Obstructive Lung Disease Who are Exposed to Wood Smoke
Get PDFParticulate matter (PM) contains microscopic solids or liquids that are so small they can be inhaled and cause serious health problems. Examples include smoke, dust, soot, and fumes.
There is increasing evidence that small particles have harmful effects on people’s breathing. Wood stoves are a source of indoor PM.https://knowledgeconnection.mainehealth.org/nnectr/1000/thumbnail.jp
The impact of climate change induced natural disasters on healthcare: Rethinking intravenous fluids
No full textNet Promoter Score as a Reflection of Patients\u27 Opinions About Telemedical Visits: A Mixed Methods Analysis
No full textIn order to assess patient experiences of telemedicine, researchers and administrators use the net promoter score (NPS), based on a likelihood to recommend (LTR) question. However, there is reason to doubt validity of this metric for this purpose. We assessed the degree to which the LTR question reflects actual patient preferences about telemedicine. Using data from a patient experience survey collected in Spring 2020, we compared LTR responses to open comments. Through content analysis, we transformed comments into categorical variables and used those variables in a multiple logistic regression model to predict LTR responses. We also thematically analyzed comments to further elucidate our results. Only about half the comments mentioned telemedicine at all. Around 6% of comments were wholly incongruent with LTR responses. In many comments, ideas about telemedicine were semantically entangled with ideas about providers. Our logistic regression found strong associations between sentiments expressed in comments and LTR responses. However, comments about telemedicine were relatively poor predictors for LTR compared to comments about the provider. NPS, which is included on many patient experience surveys used by health systems across the United States, has limitations for use as a measure of the acceptability of telemedicine for patients. Patients have more than telemedicine in mind when responding to the LTR question, and ratings conflate attitudes about providers, office policies, and staff with the telemedicine modality. More direct measures are necessary for meaningful research on the acceptability and usability of telemedicine for patients
How Can We Improve How Delirium is Managed in Acute Care?
Get PDFIn the acute care population, does assessing the patient\u27s risk factors for delirium upon admission and daily, as well as implementing evidence based preventative measures based upon risk factors, reduce the incidence and duration of delirium compared to the patient that is not screened for risk factors and does not have preventative measures implemented?https://knowledgeconnection.mainehealth.org/nurseresidency/1083/thumbnail.jp
No Longer NPO at Midnight for Heart Catheterizations
Get PDFDoes keeping cardiac catheterization patients NPO at midnight significantly reduce their adverse outcomes compared to those who are able to have clear liquids four hours pre procedure?https://knowledgeconnection.mainehealth.org/nurseresidency/1080/thumbnail.jp
Fall Risk and Patient Safety
Get PDFIn patients with increased fall risk how does using the TIPS tool compared to The Johns Hopkins Fall Risk Assessment Tool (JHFRAT) affect patient falls within an acute care setting?https://knowledgeconnection.mainehealth.org/nurseresidency/1102/thumbnail.jp
Bringing the Heat, When Babies are Too Hot
No full textAn Overview of the AAP CPG on Evaluation and Management of the Well-Appearing Febrile Infant 8-60 Days Old and QI Efforts at Maine Medical Center
Presented by Gabriela DeOliveira, MD PGY-3 Pediatric Resident, The Barbara Bush Children\u27s Hospital at Maine Medical Center
Date of Presentation: January 25th, 2024
CME available for 1 year after presentation
CME Text Code 90159https://knowledgeconnection.mainehealth.org/pediatrics_gr/1037/thumbnail.jp