practice notes from the aaaai
TRANSCRIPT
Practice Notes from the AAAAI
Lay Organization Spotlight:American Partnership forEosinophilic Disorders
The American Partnership for Eosinophilic Disorders (APFED),a nonprofit membership organization, was founded in 2001 toimprove the lives of those with eosinophilic associated diseases(EADs).
Patients with EADs often go years before being accuratelydiagnosed, struggle to find answers and lean on each other forsupport. APFED is a credible source of information and providesa place for patients and caregivers to connect with one another,raise public awareness and work together to support researchfunding.
APFED is the go-to source to assist healthcare providers withEAD patients. Our website offers patient education material,peer-reviewed research, consensus statements and recommenda-tions for diagnosis and treatment, links to resources, and infor-mation about research funding opportunities. Professionalmembership includes patient education materials and a listing inour Doc Locator database, a service that connects patients withproviders who specialize in EADs.
APFED complements medical care, helping patients thrive.We recognize that successful treatment involves patient engage-ment and insight, at any age. Our website, www.apfed.org, offersa wide variety of free resources, including web-based interactivechildren’s programming to help young patients understandrestricted diets and medical care, and an online educationmodule consisting of webinars, slide shows and interactivecomponents that was developed in collaboration with TheCenter for Managing Chronic Disease at the University OfMichigan School Of Public Health. Our annual conferenceprovides patients and families the opportunity to learn fromexperts and from one another. To further connect patients andfamilies, APFED maintains an online community on Inspire,and an active presence on Facebook, Twitter and Pinterest.
APFED is a leader in patient advocacy. Our efforts have led tothe passage of National Eosinophil Awareness Week in 2007, andfor the development of ICD-9-CM coding for four eosinophilicgastrointestinal disorders, which took effect in 2008. APFED wasawarded the Abbey S. Myer Leadership Award in 2011 by theNational Organization for Rare Disorders for outstanding advo-cacy achievements on behalf of patients with rare diseases.
To chart the course for unmet research needs for EADs, APFEDparticipated in a working group with the National Institutes ofHealth and a committee of internationally known experts todevelop a workshop report on unmet needs in eosinophil diseaseresearch, guiding funding agencies in directing research dollars forgreatest impact [Workshop Report from the National Institutes ofHealth Taskforce on the Research Needs of Eosinophil-Associated
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Diseases (TREAD). Bochner BS, Book W, Busse WW, et al.J Allergy Clin Immunol, 2012; 130(3): 587-596].
Supported 100% by donations, APFED’s Hope on theHorizon Research Fund allows investigators from a variety ofdisciplines to submit grant proposals for a peer-review process forfunding consideration. Many projects focus on the developmentof new ideas that are likely to lead to future external funding tofurther development of less invasive testing, new treatments andultimately a cure. Since the program’s inception in 2006,APFED has granted more than $1.1 million to research, and hasfunded approximately $60,000 in support of research meetingsand research programs at host institutions. We recently partneredwith the Allergy, Asthma & Immunology Education andResearch Organization, Inc. (ARTrust�) to offer the co-fundedHope APFED/ARTrust� Pilot Grant Award. The recipient ofthis year’s award, Dr. Seema Aceves from the University ofCalifornia in San Diego, will receive $140,000 over a two-yearperiod for her research proposal, “Novel epithelial markers fortissue fibrosis in pediatric eosinophilic esophagitis.”
APFED works with multiple academic centers and profes-sional societies, including the AAAAI and the American Collegeof Allergy, Asthma and Immunology (ACAAI). APFED alsoholds a seat on the AAAAI Eosinophilic Gastrointestinal Disor-ders Task Force.
To learn more about APFED, or to request an informationalpacket, visit www.apfed.org.
Lay Organization Spotlight:Campaign Urging Research forEosinophilic Disease
Over the past decade, much has been learned about eosinophilicgastrointestinal disorders (EGIDs). As with other types of allergicdiseases, the number of patients being diagnosed is on the rise.With this increase comes an even more urgent need to address thechallenges of diagnosis, evaluation and treatment of these patients.
Ten years ago, Ellyn and FredKodroff’s daughter was diagnosedwith EGID. Together, they founded CURED, the CampaignUrging Research for Eosinophilic Disease. It is their hope, and themission of this non-profit foundation, to increase awareness aboutEGIDs and to raise funding for eosinophilic disease research.
What are EGIDs?
Despite becoming more commonly diagnosed, EGIDs are stilloften misunderstood as they can manifest symptoms shared withother allergic and/or gastrointestinal conditions. As described in anarticle about Cincinnati Children’s Hospital Medical Center’sresearch into eosinophilic disorders andCURED’s generous funding
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Practice Notes from the AAAAI
support (http://www.cincinnatichildrens.org/about/corporate/annual-reports/2012/eosinophilic-disorders/), EGIDs are:
“.newly recognized conditions in which the body’simmune system treats food as a harmful entity, a foreigninvader.
In response to food, the body rapidly produces too manyimmune cells called eosinophils. The cells attach to thepathway that food takeseesophagus, stomach, intestines,and other organs.
The eosinophils trigger chronic inflammation, pain andtissue damage. Individuals with EGID suffer from growthproblems, stomach cramps, vomiting and diarrhea, andhave trouble swallowing.
Some patients do well if they eliminate specific foods fromtheir diet. Others are forced to stop eating all food and liveon a liquid formula diet. The social, emotional andpsychological effects can be staggering.”
The Cincinnati Center for Eosinophilic Disorders (CCED) atCincinnati Children’s, directed by Dr. Marc Rothenberg,Professor of Pediatrics and Director of the Division of Allergyand Immunology, is one of only a handful of places across thenation that specialize in EGID treatment and research.
“There is still a lot to learn about this condition, includingwhat causes this disease,” states Dr. Nirmala Gonsalves, AssistantProfessor of Medicine, Division of Gastroenterology, withNorthwestern University’s Feinberg School of Medicine. “Severalfactors appear to be contributing, including genetic background,food allergies and environmental triggers. Research is necessary tohelp better understand this important disease. Organizationssuch as CURED are essential in helping to increase awarenessabout this condition and help provide much needed researchfunding for this disease. Through research funding provided byCURED, significant strides have been made by researchers tobetter understand this disease and hopefully provide bettertreatments for patients with this condition.”
CURED is unwavering in its commitment to improve the livesand care of patients with EGIDs by funding the research neededfor improved diagnostic and treatment methods. Through itsever-growing number of CURED chapters, dedicated volunteers,and fundraising events across the nation, this patient advocacygroup has donated over $3 million in study grants.
Second Annual EGID Research Symposium
In collaboration with Cincinnati Children’s, CURED is proudlysponsoring its Second Annual EGID Research Symposium onNovember 22-23, 2013. This conference is for physicians,scientists, nurses, social workers, medical care team members,patients and families. Conference topics will include informationon diagnosis, therapy, psycho/social aspects of the disease andmore. CME credit will be available.
For more information about CURED and/or the upcomingsymposium, look for updates on the CURED website atwww.curedfoundation.org.
J Allergy Clin Immunol: In Practice
Lay Organization Spotlight:International Association for FoodProtein Enterocolitis
The International Association for Food Protein Enterocolitis(IAFFPE) is a recognized 501(c)3 nonprofit organization whosemission is to improve the quality of life for those affected byFood Protein-Induced Enterocolitis Syndrome (FPIES). Webridge the gap between patients, families and physicians, whilealso bringing non-IgE allergies to the forefront of medical intereston par with IgE allergies. IAFFPE is the leading internationalfoundation for the FPIES community with resources and advo-cates worldwide. We are supported by a highly-esteemed MedicalAdvisory Board (MAB) specializing in FPIES.
What Is FPIES?
FPIES is a non-IgE gastrointestinal food hypersensitivity thatmanifests as delayed, profuse vomiting, often with diarrhea, acutedehydration and lethargy. The most common triggers are milkand soy, but any food, even those thought to be hypoallergenic(e.g., rice and oat), can cause an FPIES reaction. FPIES typicallystarts within the first year of life.
Unlike most food allergies that produce immediate reactionssuch as swelling and hives, FPIES reactions are delayed andusually begin two hours after ingestion of the trigger food. Inabout 20% of cases, the child will have such an extreme reactionthat they go into shock and need to be admitted to the ER forimmediate treatment with intravenous fluids, and sometimes, IVsteroids to reverse the effects of shock.
At this time, little is known about FPIES, and few doctors areable to recognize and diagnose the syndrome. There is currentlyno cure or standardized treatment for FPIES. Unlike commonfood allergies, standard skin testing and blood testing for specificIgE allergies are routinely negative in FPIES patients.
In 60-90% of affected children, FPIES is outgrown in the firstthree years of life. However, there are individual children thathave FPIES continued into adulthood.
IAFFPE Initiatives
Our agenda is strong, broad in scope and growing to meet theneeds of FPIES patients globally. Here are a few of our currentinitiatives:
� Our MAB is partnering with leading FPIES researchers todevelop consensus guidelines for FPIES, offering a courseof action for diagnostic and treatment protocols, researchneeds and daily management of the condition.
� Soon every pediatrician in the U.S. will receive an FPIESFact Sheet developed by our MAB and distributed by theAmerican Academy of Pediatrics Section on Allergy andImmunology.
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Practice Notes from the AAAAI
� IAFFPE initiated the request for a specific ICD-10-CMdiagnosis code for FPIES. We are awaiting approval of thiscode by the CDC, which will have broad implications forthe FPIES community.
Your Partner in Patient Care
IAFFPE seeks to bring hope, support and answers to patientswith FPIES. Health professionals are key partners in this process,and we provide the resources they need to help them care forpatients with FPIES.
Pediatricians, allergists, gastroenterologists, nutritionists andother health professionals will find our materials on FPIESmanagement helpful. These materials offer practical guidance inunderstanding, diagnosing and treating FPIES, and are availableto download and share at www.iaffpe.org. We’re also your link tothe latest medical research and medical conferences highlightingFPIES.
IAFFPE also provides physicians with tools to use in theirclinical practice, including guidelines for the nutritionalmanagement of FPIES and a variety of food journals. Ourresources for patients and families include letters and handouts toprovide to emergency rooms, caregivers and schools. In addition,we offer helpful advice for daily life with an FPIES child,including articles written by experts and peer families.
For more information about IAFFPE resources and programsfor health professionals, patients and families, get in touch withus at [email protected].
Lay Organization Spotlight: TheMastocytosis Society
The Mastocytosis Society, Inc. is a 501(c)3 nonprofit organiza-tion dedicated to patients affected by mastocytosis and mast cellactivation disorders, their families, caregivers and physiciansthrough research, education and advocacy. TMS offers myriadopportunities to support the specialist in practice. The societyworks closely with a Medical Advisory Board (MAB) ofrenowned experts in guiding the treatment of patients with allforms of adult and pediatric mastocytosis and mast cell activationsyndrome. Many of these experts are involved in writing andrevising diagnostic criteria, and are available to consult withspecialists in practice concerning diagnostic and treatment issues.
Mast cell disease patients often see allergist/immunologists,gastroenterologists, dermatologists, hematologists/oncologists andendocrinologists for diagnosis and treatment. Mast cell diseasesymptoms include, but are not limited to, flushing, itching, urti-caria pigmentosa, TMEP, GERD, abdominal bloating and pain,nausea, vomiting, diarrhea, musculoskeletal pain, bone pain andloss, headaches, brain fog, blood pressure changes and anaphylaxis.Sometimes gastrointestinal complaints are the most prominentsymptoms a patient has, and may exist for years before diagnosis,necessitating visits to many specialists before a practitionerrecognizes a mast cell disorder. Treatment with anti-mediator
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therapy and avoidance of triggers can go far in helping to controlmast cell symptoms, including those of the gastrointestinal tract.
You have access to the following support for patients withmast cell disorders:
� The TMS Patient Care Coordination Nurses work withour MAB, with specialty practices, and with patients andfamilies. Contact Patient Care Coordinator and TMSChair Valerie M. Slee, RN, BSN, at [email protected].
� Educational literature is available from our website,www.tmsforacure.org, or mailed free upon request toanyone in the United States or abroad. Literature includesa DVD on Mast Cell Activation Symptomatologyproduced with a generous grant from the AAAAI, a varietyof patient information cards, and Mast Cell Disorders andEmergency Care for Mast Cell Disease Patients brochures. Anew brochure on aggressive disease is coming soon. [email protected] regarding the patient infor-mation cards. For more information about the brochures,contact Education Chair Mishele Cunningham, RN, BSN,PHN, at [email protected].
� Membership in TMS is $35.00 and includes our news-letter, The Chronicles. The Angel Fund program is availablefor patients unable to afford the cost.
� We write letters of support explaining the chronic disablingeffects of mast cell disorders for patients seeking disability.
� Support groups are available throughout the United States,and Rita Barlow, Vice Chair, Patient Support and Advo-cacy, can help to set up new groups. Contact her [email protected].
� TMS has an online Yahoo support discussion group. Visitwww.yahoogroups.com and select The MastocytosisSociety as the group.
� TMS has a moderated Facebook page. Visit us atwww.facebook.com/groups/155824303735/.
� TMS has a phone number for patient emergencies. Call(909) 206-2786.
� Our Research Committee works closely with physicianresearchers and implemented its own patient survey in 2010in conjunction with physician specialists. Data from thissoon to be published survey will greatly add to our under-standing of patients’ perceptions of their degree of impair-ment while suffering from mast cell disorders. TMS offersannual research grants in collaboration with the AAAAI andothers, either independently, or with Mastokids. ContactResearch Committee Co-Chairs, Susan Jennings, PhD, andNancy Russell, DrPh, at [email protected].
� The TMS Annual Conference is September 26-29, 2013,at the Greenville Hyatt, Greenville, SC. Mast cell specialists
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Practice Notes from the AAAAI
will be speaking, there will be panel discussions and supportgroup sessions. Contact [email protected] formore information.
TMS looks forward to the opportunity to partner with relatedspecialty practices to provide holistic care for patients andfamilies with mast cell disorders and support the physicians andhealthcare professionals who care for them.
Lay Organizations
The AAAAI places a high value on its relationships with patientadvocacy organizations in support of our mutual concern forthe needs of people with allergy, asthma and immunologicdisease and their families. In particular, the AAAAI has anongoing relationship with a group of organizations with whomwe partner on various projects as needs and opportunities arise.We encourage you to visit these organizations’ websites formore information on their initiatives and missions.
Allergy & Asthma Network/Mothers of Asthmatics(AANMA)www.aanma.orgwww.breatherville.orgAmerican Latex Allergy Associationwww.latexallergyresources.orgAmerican Partnership for Eosinophilic Disorders(APFED)www.apfed.orgAsthma & Allergy Foundation of America (AAFA)www.aafa.orgAlaska Chapter: www.aafaalaska.comCalifornia Chapter: www.aafa-ca.comGreater Kansas City Chapter: www.aafakc.orgMaryland/Washington DC Chapter: www.aafa-md.orgMichigan Chapter: www.aafamich.orgNew England Chapter: www.asthmaandallergies.orgTexas Chapter: www.aafatexas.orgSt. Louis Chapter: www.aafastl.orgCampaign Urging Research for Eosinophilic Disease(CURED)www.curedfoundation.orgFood Allergy Research & Education (FARE)The Food Allergy & Anaphylaxis Network (FAAN) and theFood Allergy Initiative (FAI) merged to form FARE.www.foodallergy.orgImmune Deficiency Foundation (IDF)www.primaryimmune.orgThe International Association for Food Protein Entero-colitis (IAFFPE)www.iaffpe.orgThe Mastocytosis Society (TMS)www.tmsforacure.orgUS Hereditary Angioedema Association (HAEA)www.haea.org
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AAAAI Launches New P.I. Pro Serieswith Food Allergy PIM
To offer innovative mechanisms to meet the educational needs ofAAAAI members, the AAAAI has launched P.I. Pro. P.I. Pro isa new series of continuing education activities that meet certainMaintenance of Certification (MOC) requirements. The firstrelease in this series is P.I. Pro: Food Allergy, a food allergyperformance improvement module that stemmed from theinitiatives of Immediate Past-President A. Wesley Burks, MD,FAAAAI.
“I am pleased to announce the availability of P.I. Pro: FoodAllergy. This module allows AAAAI members to apply evidence-based recommendations from the Guidelines for the Diagnosisand Management of Food Allergy in the United States toenhance the quality of care delivered in their practices,” saidDr. Burks. “One of the most significant tasks when creatinga practice improvement module is developing the measures.I would like to recognize Stacie M. Jones, MD, and Scott H.Sicherer, MD, FAAAAI, for their hard work on the food allergymeasures for P.I. Pro: Food Allergy.”
P.I. Pro: Food Allergy, which is available free from the onlineAAAAI Continuing Education Center, leads you througha three-stage quality improvement process. To earn continuingeducation credit and satisfy Part IV MOC requirements, youmust successfully complete all three stages of the module.
The steps include:
1. Baseline Assessment: You will need to enter data froma minimum of 10 charts for patients with food allergy andcompare your performance to the standards of care definedby the food allergy measures. Based on your baselineassessment, you will identify areas for improved compli-ance with at least one measure. You will then select andimplement interventions to help you achieve improve-ment. These interventions can include a variety of actions,such as completing additional education, changing theprocess of providing care in your practice or using newpatient communication tools.
2. Action: During the Action Phase, you will take 30 days toimplement the interventions you identified, either on yourown or in collaboration with your clinic staff.
3. Reassessment: After completing the Action Phase, you willenter data from another set of 10 or more charts forpatients with food allergy. Next you will compare yourreassessment and baseline assessment results to identifywhat, if any changes, you have achieved and the impact ofthose changes on your practice and your patients.
Access P.I. Pro: Food Allergy at education.aaaai.org/pipro toquantify quality and work towards enhancing patient care whileyou earn continuing education credit and meet MOCrequirements.
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