The Olander Family
In the Olander Family Cystic Fibrosis Project, various family members are depicted facing challenges related to CF, such as lung infections, genetic screenings, respiratory failure, pancreas issues, and lung transplant referrals. The project also explores educational topics, phase-1 visits, and proposed future visits for learning and development. Medical professionals and faculty play a crucial role in guiding the family members through their CF journey, addressing issues like patient safety, medication errors, ethics, and communication. The project sheds light on the complexities of CF treatment and care, emphasizing the importance of holistic healthcare approaches and lifelong learning in managing this genetic disorder.
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Presentation Transcript
The Olander Family Cystic Fibrosis
CF-family project faculty Anu Chawla, MD. Pediatric gastroenterology Patricia Galvin-Parton, MD. Pediatric genetics Cathy Kier, MD. Pediatric pulmonary Jonathan Mintzer, MD. Pediatrics, neonatal Deborah Richman, MBChB. Anesthesiology Paul Richman, MD. Medicine, pulmonary/critical care Sandy Simon, MD. Biochemistry
CF family members Tara: Child with Pseudomonas airway colonization/infection. She has the burden of chronic lung infection and respiratory therapy. Later as a teenager she has an unplanned pregnancy and suffers a medication error during an acute respiratory exacerbation. A later episode of respiratory failure raises issues about DNR and consent by a minor Chloe: Younger sib. As a neonate, she has meconium ileus; raises issues of genetic screening and the pathophysiology of CFTR defects. There is family stress related to a sick newborn. Later in childhood she copes with pancreatic insufficiency. As an adolescent she has delayed growth and maturation with adjustment problems at school. At a later stage, she is referred for lung transplantation. Mother: Asymptomatic disease carrier Father; Paternal grandfather Asymptomatic disease carrier
Educational topics related to CF Molecular and cellular medicine Polymorphisms, genetic expression Modulators of enzyme function Physiology and pathophysiology of CF and its treatment Respiratory: bacteriology, structural change, airflow obstruction, gas exchange. Gastrointestinal: mucosal and exocrine dysfunction, malabsorption, diagnostic methods. Patient care Patient safety, medication error and disclosure Transplantation medicine Respiratory failure Lifelong learning Evidence-based medicine: statistics, study design and outcome evaluation Social and professional issues Advance directives, End-of-life ethics Adolescent medicine and women s health Interprofessional care Family-centered care; grief
Phase-1 visits in 2014-15 : Tara Olander Pulm pathophysiology: April 2015 T.I.M.E. week #3: May 2015 Tara age 15. Learning topics: Patient safety Medication error: disclosure Advance directives; ethics Human sexuality Communication Tara age 8. Learning topics: CF gene defects, epidemiology Mucosal function Airway bacterial flora Multi-organ disorder Pedagogical method self-study lecture on CF Interactive case study in class Pedagogical methods Video of a deep dive Interactive discussion Faculty Planning: Iris Granek, Mary Kritzer, Paul RIchman Video: Caroline Santora. Doctors C. Kier, M. Parker and S. Kunkov. Faculty Catherine Kier Paul Richman Time: 2 hrs, Time: 2 hrs. New course
Additional Proposed Phase-1 visits: 2015-16 Chloe Olander in the Electronic Health Record TTMS course MFM Course GI Pathophysiology MCS course Chloe, age 13 Learning topics Pancreatic enzymes Nutrition/maturation EMR skills Chloe, age 19. Learning topics Intra-family stress Organ Transplant Allocation of medical resources Chloe, newborn. Learning topics Obstructed bowel. Genetic screening Electronic med record Chloe, infant Learning topics: Gene polymorphism Genetic modifiers CFTR function Host vs. microbe Pedagogical methods Case-based seminar, write progress note Pedagogical methods Small Groups work Critique of EMR note Pedagogical methods OSCE using EMR Pedagogical methods Background reading, CF Introduction to EMR Faculty: Rafaat ElMaghrabi Paul Richman Sandy Simon Faculty Faculty Faculty Michael Vetrano, Cathy Kier Cathy Kier Anu Chawla Jonathan Mintzer Patricia Galvin-Parton Time: 2 hours New case in existing course Time: 2 hours min Adapt an existing case Time: 1 hours New case in existing course Time: 2 hrs New session
Other proposed Olander visits: Phase 2 and Phase 3 in the learn curriculum
Curricular phase 2 Peds/OB clerkship, Mar 2016 Translational pillar: Genetics ** Chloe, newborn to age 2. Learning topics Obstructed bowel, peritonitis. Infant feeding Volume resuscitation Pancr enzyme replacement Chloe newborn, mom age 36 Learning topics: Genetic polymorphisms Genetic modifiers Chloride channel function Host-microbe interaction Pedagogical methods Case-based interactive seminar Pedagogical methods To be determined Faculty: Sidonie Morrison Patricia Galvin-Parton Sandy Simon Faculty Jonathan Mintzer Maribeth Chitkara Time: 2 hours New case in an existing series Time: ~3 hrs Part of a new pillar ** possible curricular visit
Curricular phase 3 Anesthesia rotation TTR course, 2016 Selective in Medicine ACE Tara age 14, and Grandfather Learning topics: Pre-op assessment (IV port) Informed consent for a minor Tara age 16. Learning topics Arterial blood gas analysis Monitoring gas exchange Treating hypoxia, hypercarbia Tara age 17 Respiratory failure Mechanical ventilation Inter-professional care Pedagogical methods Simulation Small-group problem Pedagogical methods Case-based plenary session Pedagogical methods Small group discussion Faculty Paul Richman Andrew Wackett Rahul Panesar Faculty Faculty Deborah Richman Paul Richman Time: 30 minutes Adapt an existing case Time: 30 min Adapt an existing case Time: 3 hrs New ILP offering
