Lysosomal Storage Disorders: Optimizing the Transition From Child to Adult Care.

Slides:



Advertisements
Similar presentations
ROBIN STEED, PHD, LOTR CHRISTINE WRIGHT, PHD, LOTR (CO-CONSPIRATORS) Evidence-Based Practice.
Advertisements

30 Our belief 30 Our approach 30 Choose your support 30.
Caregiver Reported Missed Doses of Antiretroviral Therapy in HIV-Infected Children in Western Kenya Michael L. Scanlon 1,2 ; Winstone M. Nyandiko 2,3 ;
CHILD HEALTH NURSING. Specialists of this field are known as pediatric nurse. In comparison to other fields of nursing practice pediatric nursing is very.
© The Critical Thinking Consortium Children’s Rights – Caring adults # 1.
Implementation considerations Key tasks Operational responsibilities Primary care responsibilities Secondary care responsibilities.
7 Grief and Grieving of Children Objectives Children’s Understanding And Response To Death.
Power R Game Managing Stuttering By Gordon Blood Stuttering Foundation of America.
Current Approaches to Management of DAS Michelle D. White.
Notice the Children Project Project Workers: Veli-Matti Saarinen and Hilkka Räisänen.
Integration, Access, and Parity A Provider Perspective.
Looked After Children. Priorities for the VSH In the short term, and as far as possible, support further improvements in the outcomes of all Looked.
Ready, Set, Goal! Sruthi Veeravalli, MSW Social Work Clinician February 27, 2015.
Introduction. Adult ADHD in the Real World: From Clinical Trials to Clinical Practice.
Managing Adult Children
The Nurse’s Role in Inflammatory Bowel Disease
The Allied Health Professional Clinician who researches
Knowledge and Understanding
Primary Care Challenges in Depression - To Treat or Refer?
Duration of Dual Antiplatelet Therapy Post-ACS: Lessons From Clinical Trials.
The Clinical Enigma of Cardiogenic Shock
Heart Failure and Hospital Readmissions
Emerging Data on ACS Management From ACC
Optimizing Quality of Life and Mental Health in Patients With Psoriasis.
Differentiating Drug-Seeking Behavior From Poorly Controlled Pain
Duration of Dual Antiplatelet Therapy Post-ACS: Lessons from Clinical Trials.
Medication Nonadherence in Gout
ريكاوري (بازگشت به حالت اوليه)
Jessica P. Hollenbach, PhD, Michelle M. Cloutier, MD 
Patient-Centered Care in Cystic Fibrosis
How to Achieve Aggressive BP Goals in Difficult-to-Treat Patients
PrEP in Women: Unique Considerations and Strategies
Helping Children Express Their Wants and Needs
Managing IBD in Children
Aligning Patients and Clinicians: Optimizing Outcomes in Metastatic NSCLC.
Talking to Patients About Diabetes Management
Case Study. Managing Medication and Adherence in SIHD: Partnering With the Patient to Improve Care.
Introduction. A Reality Check on BP Goals and Optimizing Patient Adherence to Treatment.
PrEP.
From Start to Finish: Initial and Ongoing Care for Men Receiving PrEP
ADDITIONAL RESOURCES General Child Care Child Care for
Exploring Statin Intolerance
Innovations in Home Care
Duration of Dual Antiplatelet Therapy Post-ACS: Lessons from Clinical Trials.
After the Baby Comes.
Program. Basal Insulin in the Modern Era The CDE's Role in Improving Utilization and Outcomes.
Optimizing Insulin Therapy in Primary Care: Basal Plus Incretin Combinations.
Addressing Pneumococcal Disease in Latino Communities
LALD Introduction Patient Case Presentation.
Current Challenges in Managing Hemophilia
The Adherence Challenge in Schizophrenia Roles of Current and Emerging Therapies.
A Nursing Perspective on Improving Outcomes for Patients With Hemophilia.
Etiology and Incidence Pathophysiology Hemophilia is due to a defect in thrombin generation on the platelet surface.
Communicating With Your Patients About Major Depressive Disorder
Fabry Disease.
Improving Adherence to Antiplatelet Therapy After an ACS Event
Inhaled Antibiotics for Patients With CF in the Era of CFTR Modulators
Clinical Challenges and Updates in Managing Seizure Clusters
New Lipid-Lowering Guidelines
When is one kidney not enough?
Incorporating New PAH Treatments Into Clinical Practice
Lysosomal Storage Disorders: Optimizing the Transition From Child to Adult Care.
The Changing Goals of CML Therapy

Tuesday 09 February PAEDIATRIC REFRESHER COURSE 2010
Importance of Early Diagnosis and Management in SMA
Where Does Anticholinergic Therapy Fit in Moderate to Severe Asthma?
CACFP Meal Pattern Implementation Library
Navigating the Journey
Shared-Decision Making in Dyslipidemia
Presentation transcript:

Lysosomal Storage Disorders: Optimizing the Transition From Child to Adult Care

Educational Objectives

What Is Nephropathic Cystinosis?

Clinical Manifestations of Nephropathic Cystinosis

Transition vs Transfer

Critical Components of the Transition Process

Critical Components of the Transition Process (cont)

Critical Components of the Transition Process (cont)

Few Clinicians Are Trained to Care for Children and Adults With Cystinosis

Cysteamine Therapy

Cysteamine Therapy (cont)

Patterns of Posttransplant Adherence

Risk Factors for Posttransplant Nonadherence

Strategies for Dealing with Nonadherence

Conclusions

References

References (cont)

References (cont)