Transitional Care for Pediatric Patients with Neuromuscular Diseases: A Health Technology Assessment
Jackie Tran, MD
University of Medicine and Dentistry of New Jersey, USA
HTAi 9th Annual Meeting, Bilbao
Integrated Care for a Patient Centered System
25 June, 2012
SHARE Presentation: Palliative Care for Womenbkling
Dr. Michael Pearl discusses supportive palliative care for women with cancer, how it differs from hospice care, and the New York Palliative Care Information Act. Dr. Michael Pearl is Professor and Director of the Division of Gynecologic Oncology in the Department of Obstetrics, Gynecology and Reproductive Medicine at Stony Brook University Hospital.
How treating psychological and social needs can improve the daily lives of the chronically ill, creating a new model for outpatient care, quality of life and aging, humanization of care, streamlining responsibilities of hospital staff and news around the world.
Palliative care is about providing well-being and the highest quality of life to patients with serious, progressive, chronic life-limiting illness, including during the dying process.
SHARE Presentation: Palliative Care for Womenbkling
Dr. Michael Pearl discusses supportive palliative care for women with cancer, how it differs from hospice care, and the New York Palliative Care Information Act. Dr. Michael Pearl is Professor and Director of the Division of Gynecologic Oncology in the Department of Obstetrics, Gynecology and Reproductive Medicine at Stony Brook University Hospital.
How treating psychological and social needs can improve the daily lives of the chronically ill, creating a new model for outpatient care, quality of life and aging, humanization of care, streamlining responsibilities of hospital staff and news around the world.
Palliative care is about providing well-being and the highest quality of life to patients with serious, progressive, chronic life-limiting illness, including during the dying process.
Palliative care beyond cancer. Julia Addington-Hall. I Technical Conference about the Strategy in Palliative Care in The Nacional Health System of Spain. (Madrid, Ministry of Health and Consumer Affairs, 2008)
Adolescents and Young Adults With Cancer Treatment and Transition to An Adult...Methodist HealthcareSA
David J Friedman, MD, Phd
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The goal of this webinar was to educate healthcare professionals on interventions for cough, dyspnea, hemoptysis, and the “death rattle” in patients with end-of-life respiratory symptoms.
Palliative care beyond cancer. Julia Addington-Hall. I Technical Conference about the Strategy in Palliative Care in The Nacional Health System of Spain. (Madrid, Ministry of Health and Consumer Affairs, 2008)
Adolescents and Young Adults With Cancer Treatment and Transition to An Adult...Methodist HealthcareSA
David J Friedman, MD, Phd
Presented at the 2010 Texas Adolescent and Young Adult Oncology Conference hosted by Methodist Healthcare-San Antonio in October, 2010
Respiratory Symptoms in the Terminally Ill PatientVITAS Healthcare
The goal of this webinar was to educate healthcare professionals on interventions for cough, dyspnea, hemoptysis, and the “death rattle” in patients with end-of-life respiratory symptoms.
Getting the balance right - Adult services role in improving transition Helena Gleeson
Leicester Royal Infirmary Representing RCP YAASG
NHS Improving Quality held an event in London on 31 July 2013 to progress the children and young people transition to adult services work with a focus on turning the rhetoric into practice entitled “Working to Define a Generic Service Specification for Transition”
23 September 2010 - National Council for Palliative Care / National End of Life Care Programme / the neurological alliance 15 February 2013 - National End of Life Care Programme / Whole Systems Partnership
This document aims to set out an EoLC framework for implementation that speciï¬cally meets the needs of those with neurological conditions.
It covers:
Strategic context
End of life care tools
End of life care in neurological disease
Communication and advance care planning
Co-ordination and multidisciplinary approach to care
Management of physical symptoms
Holistic care - psychosocial and spiritual aspects
Care at the end of life
Carers
Workforce, education and training
Commissioning health and social care services
Care of Sickle Cell Disease Patients: Process Improvement & Change with NursesTosin Ola-Weissmann
Populations with SCD are at risk for disparities primarily because of the lack of knowledge on the part of the healthcare providers regarding the disease; inadequate pain management and prejudice among the staff (Tanabe & Myers, 2007).
On interviewing several nurses in the hospital, many acknowledge that they have never taken care of a patient with SCD and do not know what to assess for. The only nurse with experience of taking care of a SCD patient did not know the complications of the disease and wondered why sickle cell patients “always request pain medication when it’s obvious they are not in pain.”
This presentation is a guide providing essential information to medical professionals on dealing with patients that have sickle cell anemia. In addition, the SCD questionnaire is designed to enhance the assessment of SCD patients by medical professionals in the emergency room and serve as a platform for understanding their vulnerabilities during assessment.
Emphasis of this questionnaire is placed on identifying risk factors for depression, the patient’s socio-economic barriers, lifestyle habits, transportation issues, safe home environment, effective pain management and avenues for possible genetic counseling all of which sickle cell patients have shown vulnerability to (Dorsey & Murdaugh, 2003).
Patient Directed Care; Why it’s important and what does it really mean?Spectrum Health System
Understanding the importance of effective patient centered communication for patient engagement and improved health outcomes. Will discuss the importance of patient directed care and its relationship to the quadruple aim. Will discuss the barriers and a framework for conversations that are critical to patient directed care and cultural competency.
Risk profiling, multiple long term conditions & complex patients, integrated ...Dr Bruce Pollington
Dr Bruce Pollington web-ex presentation to LTC QIPP programme
Utilising risk profiling, and risk stratification to identify patients with multiple long term conditions requiring complex care through integrated care teams.
Palliative care is an approach to care which improves the quality of life of patients and their families facing the problem associated with life-threatening illness.
Person Centered Care through Integrating a Palliative Approach: Lessons from ...BCCPA
Aging adults are entering residential care facilities with more advanced disease than in the past and their length of stay is shorter. Most health care providers in these facilities do not receive targeted education and training in palliative care, nor are they confident to have crucial conversations about goals of care and end of life challenges with residents and their families. Due to limited capacity to manage predictable symptoms related to end of life and insufficient planning, many residents are transferred to hospital in crisis and die in the Emergency Department or acute care wards.
This presentation will showcase some of the initiatives by identifying common themes, unique features of each and strategies for success. Opportunity will be given for delegates to ask questions and brainstorm how lessons learned from these initiatives could inform the care provided at their own facility.
Presented by:
- Jane Webley, RN LLB Regional lead, End of Life, Vancouver Coastal Health (EPAIRS and the Daisy project)
- Dr Christine Jones, Island Health (SSC project: Improving end of life outcomes in residential care facilities: A palliative approach to care)
- Kathleen Yue, RN, BSN, MN, CHPCN (c) Education Coordinator, BC Center for Palliative Care
Health Technology Assessment (HTA) Report: Interventions to increase particip...HTAi Bilbao 2012
Health Technology Assessment (HTA) Report: Interventions to increase participation to organised cancer screening programs
Ministry of Health Grant for Applied Research
Giorgi Rossi P, Camilloni L, Ferroni E, Jimenez B, Furnari G, Guasticchi G, Borgia P.
Laziosanità – Agenzia di Sanità Pubblica della Regione Lazio
Social values international programme: integrating research and policy to ens...HTAi Bilbao 2012
Social values international programme: integrating research and policy to ensure fair allocation of health care resources .
HTAi Conference 2012 Panel Session
Joint chairs
Professor Peter Littlejohns and Professor Albert Weale
Challenges in commissioning research on what works in integrated careHTAi Bilbao 2012
Challenges in commissioning research on what works in integrated care.
Tara Lamont, Scientific Adviser
NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC)
www.netscc.ac.uk
EVALUATION OF PSYCHOSOCIAL FACTORS INFLUENCING HEALTHCARE PROFESSIONAL ACCEPT...HTAi Bilbao 2012
EVALUATION OF PSYCHOSOCIAL FACTORS INFLUENCING HEALTHCARE PROFESSIONAL ACCEPTANCE OF TELEMONITORING FOR CHRONIC PATIENTS
Estibalitz Orruño1, Marie-Pierre Gagnon2-3, José Asua4, Eva Reviriego1
1 Basque Office for Health Technology Assessment (Osteba), Department of Health and Consumer Affairs, Basque Government, Vitoria-Gasteiz, Spain.
2 Faculty of Nursing Sciences, Université Laval, Québec, Canada.
3 Research Centre of the Centre Hospitalier Universitaire de Québec, Québec, Canada.
4 Direction of Knowledge Management and Evaluation, Department of Health and Consumer Affairs, Basque Government, Vitoria-Gasteiz, Spain.
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dwh Simulation Services
Vienna , Austria
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How to promote the prescription of evidence-based non-pharmacological treatments in France?
HTAi 2012, Bilbao
Clémence Thébaut, Olivier Scemama, Françoise Hamers, Catherine Rumeau-Pichon
Department of economic and public health evaluation
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Flu Vaccine Alert in Bangalore Karnatakaaddon Scans
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Dr. Vidisha Kumari, a leading epidemiologist in Bangalore, emphasizes the importance of getting vaccinated. "The flu vaccine is our best defense against the influenza virus. It not only protects individuals but also helps prevent the spread of the virus in our communities," he says.
This year, the flu season is expected to coincide with a potential increase in other respiratory illnesses. The Karnataka Health Department has launched an awareness campaign highlighting the significance of flu vaccinations. They have set up multiple vaccination centers across Bangalore, making it convenient for residents to receive their shots.
To encourage widespread vaccination, the government is also collaborating with local schools, workplaces, and community centers to facilitate vaccination drives. Special attention is being given to ensuring that the vaccine is accessible to all, including marginalized communities who may have limited access to healthcare.
Residents are reminded that the flu vaccine is safe and effective. Common side effects are mild and may include soreness at the injection site, mild fever, or muscle aches. These side effects are generally short-lived and far less severe than the flu itself.
Healthcare providers are also stressing the importance of continuing COVID-19 precautions. Wearing masks, practicing good hand hygiene, and maintaining social distancing are still crucial, especially in crowded places.
Protect yourself and your loved ones by getting vaccinated. Together, we can help keep Bangalore healthy and safe this flu season. For more information on vaccination centers and schedules, residents can visit the Karnataka Health Department’s official website or follow their social media pages.
Stay informed, stay safe, and get your flu shot today!
Ethanol (CH3CH2OH), or beverage alcohol, is a two-carbon alcohol
that is rapidly distributed in the body and brain. Ethanol alters many
neurochemical systems and has rewarding and addictive properties. It
is the oldest recreational drug and likely contributes to more morbidity,
mortality, and public health costs than all illicit drugs combined. The
5th edition of the Diagnostic and Statistical Manual of Mental Disorders
(DSM-5) integrates alcohol abuse and alcohol dependence into a single
disorder called alcohol use disorder (AUD), with mild, moderate,
and severe subclassifications (American Psychiatric Association, 2013).
In the DSM-5, all types of substance abuse and dependence have been
combined into a single substance use disorder (SUD) on a continuum
from mild to severe. A diagnosis of AUD requires that at least two of
the 11 DSM-5 behaviors be present within a 12-month period (mild
AUD: 2–3 criteria; moderate AUD: 4–5 criteria; severe AUD: 6–11 criteria).
The four main behavioral effects of AUD are impaired control over
drinking, negative social consequences, risky use, and altered physiological
effects (tolerance, withdrawal). This chapter presents an overview
of the prevalence and harmful consequences of AUD in the U.S.,
the systemic nature of the disease, neurocircuitry and stages of AUD,
comorbidities, fetal alcohol spectrum disorders, genetic risk factors, and
pharmacotherapies for AUD.
Ozempic: Preoperative Management of Patients on GLP-1 Receptor Agonists Saeid Safari
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ASA GUIDELINE
NYSORA Guideline
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Couples presenting to the infertility clinic- Do they really have infertility...Sujoy Dasgupta
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Pulmonary Thromboembolism - etilogy, types, medical- Surgical and nursing man...VarunMahajani
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Explore natural remedies for syphilis treatment in Singapore. Discover alternative therapies, herbal remedies, and lifestyle changes that may complement conventional treatments. Learn about holistic approaches to managing syphilis symptoms and supporting overall health.
Title: Sense of Taste
Presenter: Dr. Faiza, Assistant Professor of Physiology
Qualifications:
MBBS (Best Graduate, AIMC Lahore)
FCPS Physiology
ICMT, CHPE, DHPE (STMU)
MPH (GC University, Faisalabad)
MBA (Virtual University of Pakistan)
Learning Objectives:
Describe the structure and function of taste buds.
Describe the relationship between the taste threshold and taste index of common substances.
Explain the chemical basis and signal transduction of taste perception for each type of primary taste sensation.
Recognize different abnormalities of taste perception and their causes.
Key Topics:
Significance of Taste Sensation:
Differentiation between pleasant and harmful food
Influence on behavior
Selection of food based on metabolic needs
Receptors of Taste:
Taste buds on the tongue
Influence of sense of smell, texture of food, and pain stimulation (e.g., by pepper)
Primary and Secondary Taste Sensations:
Primary taste sensations: Sweet, Sour, Salty, Bitter, Umami
Chemical basis and signal transduction mechanisms for each taste
Taste Threshold and Index:
Taste threshold values for Sweet (sucrose), Salty (NaCl), Sour (HCl), and Bitter (Quinine)
Taste index relationship: Inversely proportional to taste threshold
Taste Blindness:
Inability to taste certain substances, particularly thiourea compounds
Example: Phenylthiocarbamide
Structure and Function of Taste Buds:
Composition: Epithelial cells, Sustentacular/Supporting cells, Taste cells, Basal cells
Features: Taste pores, Taste hairs/microvilli, and Taste nerve fibers
Location of Taste Buds:
Found in papillae of the tongue (Fungiform, Circumvallate, Foliate)
Also present on the palate, tonsillar pillars, epiglottis, and proximal esophagus
Mechanism of Taste Stimulation:
Interaction of taste substances with receptors on microvilli
Signal transduction pathways for Umami, Sweet, Bitter, Sour, and Salty tastes
Taste Sensitivity and Adaptation:
Decrease in sensitivity with age
Rapid adaptation of taste sensation
Role of Saliva in Taste:
Dissolution of tastants to reach receptors
Washing away the stimulus
Taste Preferences and Aversions:
Mechanisms behind taste preference and aversion
Influence of receptors and neural pathways
Impact of Sensory Nerve Damage:
Degeneration of taste buds if the sensory nerve fiber is cut
Abnormalities of Taste Detection:
Conditions: Ageusia, Hypogeusia, Dysgeusia (parageusia)
Causes: Nerve damage, neurological disorders, infections, poor oral hygiene, adverse drug effects, deficiencies, aging, tobacco use, altered neurotransmitter levels
Neurotransmitters and Taste Threshold:
Effects of serotonin (5-HT) and norepinephrine (NE) on taste sensitivity
Supertasters:
25% of the population with heightened sensitivity to taste, especially bitterness
Increased number of fungiform papillae
Ocular injury ppt Upendra pal optometrist upums saifai etawah
Transitional Care for Pediatric Patients with Neuromuscular Diseases: A Health Technology Assessment
1. Transitional Care for Pediatric
Patients with Neuromuscular Diseases:
A Health Technology Assessment
Jackie Tran, MD
University of Medicine and Dentistry of New Jersey, USA
HTAi 9th Annual Meeting, Bilbao
Integrated Care for a Patient Centered System
25 June, 2012
6. Reality: Unmet Needs
Non-adherence to medications over a lifetime in
renal transplant patients
Decrease clinic attendance and an average of 1.47
health provider changes in diabetes type 1 patients
Decrease mobility in spina bifida patients during
transitional years
Increase long-term morbidity and mortality in cystic
fibrosis patients
9. Epidemiology
Worldwide prevalence of disabling, inherited
neuromuscular diseases: 1 in 3,500
Increased survival rate to adulthood
Some Survival Statistics in the Literature
60% of males born with Duchenne between 1983 – 1987 survived past age 24
More than 33% of Charcot-Marie-Tooth Type 2 patients live past the third
decade of life
A patient with Type 2 SMA have survival rate of 68.5% at age 25
11. Equally Poor Transitional Care
A glaring 60% of 850 people living with muscle
disease rate transition from child to adult
services as “poor” or “very poor”
Muscular Dystrophy Campaign 2008 survey
13. Objectives
Identify systematic and unique barriers to a
successful transition of care for adolescents
with neuromuscular diseases (NMDs).
Recommend comprehensive strategies to
improve the experience for patients, family
members, and health providers alike.
16. General Observations
Notable publication increase on transitional care
over the past 5 years
Emphasis on the following diagnoses:
diabetes, cancer, renal transplant, inflammatory bowel dz
cerebral palsy and spina bifida
Most prolific countries: USA, Canada and UK
Honorable mentions: Australia, France, Japan, Switzerland
17. All Transitional Care NMD-Relevant
Publications Publications
Number of
60+ 14
Publications
• generic: “chronic illnesses” & “special health care needs” &
“congenital disabilities” & “developmental disabilities”
Population • inter-mix with spina bifida &
description • multiple diagnoses-specific cerebral palsy & “chronic
publications neurological disorders”
• Duchenne dystrophy
18. All Transitional Care NMD-Relevant
Publications Publications
• highlight need for transitional care
• clinician & patient survey/commentaries
Publication • anecdote / case reports
Content • single-institution experience
• review of medical topics on
• general critiques of current
transitional ages
transition processes & models
• subjective reports of wellness & satisfaction
Outcome • individual programs: • health expenditure at
measures transitional age as a secondary
admissions & biomarkers
(retrospective & limited to 1 year after transition) outcome
19. Models of Transitional Care
Diagnosis-focused (most common)
pediatric and adult provider collaboration
Medical home-based (least common)
primary care practitioner as coordinator
Adolescent-focused
physical, physiological, social issues focused
Transition-based
outreach representatives from one facility
20. General Barriers
Afterthought process
Provider availability (absolute & time)
Coordinator responsibility
Decision-making capacity
Advisors resourcefulness
Insurance coverage
Transportation / Architectural
Medical records
Ventilator, dialysis
21. Emotional Barriers
Patient & Family
neglect
abandonment
Fear
Anxiety
Distrust
Uncertainty Peds team
Adult team
burden attachment
unfamiliarity over-confidence
22. Unique Barriers & Opportunities
Barriers
Even more limited provider availability
Institutionalized patients
Aging care providers
Uncertain future
Opportunities
Assistive technology
Malpractice insurance
Insurance / resources for the very ill
Association with spina bifida and/or cerebral palsy
23. Recommendations
Early notification
Individualized plan
flexible but definitive date of transition
assess cognitive/emotional and functional status
gradual promote of independence
Comprehensive approach
patient’s and family members’ input
interdisciplinary team
26. Conclusions
All children with neuromuscular diseases need
a transition plan before entering adulthood
Successful transition requires coordination of
services across all providers
Especially for individuals affected by NMDs,
the transition plan should incorporate
patient’s and family’s long-term goals
27. Primary References
Abbott, D. Transition to adulthood for young men with Duchenne Muscular Dystrophy. International Journal of Integrated Care, 31
December 2009 - ISSN 1568-415
Centers for Disease Control and Prevention (CDC). Prevalence of Duchenne/Becker muscular dystrophy among males aged 5-24
years - four states, 2007. MMWR Morb Mortal Wkly Rep. 2009 Oct 16;58(40):1119-22.
Strehle EM. Long-term management of children with neuromuscular disorders. J Pediatr (Rio J). 2009 Sep-Oct;85(5):379-84.
Tiffreau V, et al. Ann Readapt Med Phys. 2006 Dec;49(9):652-8. Epub 2006 Jun 27. [Transition in health care from youth to
adulthood for disabled people].
Ouyang L, et al. Health care utilization and expenditures for childrenand young adults with muscular dystrophy in a privately insured
population. J Child Neurol. 2008 Aug;23(8):883-8. Epub 2008 Apr 10.
Manzur AY, Muntoni F. Diagnosis and new treatments in musculardystrophies. J Neurol Neurosurg Psychiatry. 2009 Jul;80(7):706-14.
Hill ME, Phillips MF. Service provision for adults with long-term disability: a review of services for adults with chronic
neuromuscular conditions in the United Kingdom. Neuromuscul Disord. 2006 Feb;16(2):107-12. Epub 2006 Jan 19.
Nomura Y. [Care continuity for patients with myasthenia gravis during transition from childhood to adulthood]. Nihon Rinsho. 2010
Jan;68(1):39-44.
Yoshioka M, et al. [Care continuity for patients with myopathy during transition of childhood to adulthood]. Nihon Rinsho. 2010
Jan;68(1):53-6.
Minicozzi A. Transition to adult care: another view. Pediatr Nurs. 2000 Jul-Aug;26(4):411-2.
Katz JD, et al. Parents' perception of self-advocacy of children with myositis: an anonymous online survey. Pediatr Rheumatol Online
J. 2011 Jun 7;9(1):10.
Goodman DM, et al. Adults with chronic health conditions originating in childhood: inpatient experience in children's hospitals.
Pediatrics. 2011 Jul;128(1):5-13. Epub 2011 Jun 27.
Rearick E. Enhancing success in transition service coordinators: use of transformational leadership. Prof Case Manag. 2007 Sep-
Oct;12(5):283-7.
Parker AE, et al. Analysis of an adult Duchenne muscular dystrophy population. QJM. 2005 Oct;98(10):729-36. Epub 2005 Aug 31.