mYourDownSyndrome

The Project • Purpose• Theconcept– PossibleDStopics– Content/material– Organizationandpresentation

• Understandingtheknowledgegap– Feedbackfromsurveys

Purpose

• Creationofane-Learningtool• Delivery– onlineandeasilyaccessible• Contents- basedonliteraturereviewsandresearch• Includesresources,guidelinesandcommunitysupport• Targetusers- physiciansandresidents• Addressesknowledgegapidentifiedbytargetgroup

The Concept: Topics in DS

• Clinicalpractices,guidelines,andresources• Reviewofbodysystemsandmedicalconditions

– Physiology/pathologyofDS– MentalHealth

• Lifehistory– Demographicsandepidemiology– Interactionswithhealthcare– ThechildwithDS– TheadolescentwithDS– TheadultwithDS/transitionintoadulthood– Long-termoutcomes– Qualityoflife

The Concept: Content OtherIssueso Educationandprogramsoflearningo Behaviouralmanagemento Transitionintoadultcareo Late-onsetmanifestationso Socialintegrationandqualityoflifeo Topicsonsexualityandfamilyraisingo Agingo Healthcareneedsandprofessional

support(i.e.dietician,speechtherapist,occupationaltherapist)

MedicalconditionsinDSo Cardiovascularabnormalitieso ENTo Respiratoryissueso Thyroiddisorderso Infertilityandsexualdysfunctiono Oncologyo GIdisorderso Nutritionandobesityo VisionandHearingo Commoninfections/diseaseso Immunodeficiencyordysfunctiono Osteoporosisandotherstructuralissueso DentalCarieso SleepandDSo Epilepsyandotherneurologicalissueso Neuro-cognitivedeclineo PsychiatricIssueso Alzheimer'sdiseaseinDS

The Concept: Organization and Look

• Format– Timeline,highlightingcommonconditionsormedicalissuesoccurringataspecificage– ProvidesanoverviewoftheLifeHistoryofDStopics

• Delivery- interactivewebsiteplatform– Dropdownmenusformajortopics/objectives– Organizedandstreamlinedpresentationofinformation– Linkstomediamaterials:resources,literature,videosetc.– Timelinehostedonwebsite

• Exampleofaninteractivewebsite:http://www.kidsnewtocanada.ca/health-promotion

Understanding the Knowledge Gap

TheProblem

• WhatknowledgeaboutDSismissinginHealthcare?• Whatisthebestwaytopresentthisinformation?

OurSolution

• Askthetargetaudiencedirectlyandcollectandanalyzetheirresponses

• Askphysicians,residents,andfellows

TheSurvey

• Onlinesurveylinkwasdistributedtotargetgroup• DatacollectionandanalysisthroughaREDCapplatform

The Surveys

• Thesurveyresultsprovideinformationon:– Physiciansandhealthcareprofessionals’background– NumberofpatientswithDownSyndromeseen,anddegreeof

experiencewithDS– Suggestionsregardingtheknowledgegap– DStopics,resources,andmedicalconditionsofinteresttophysicians– PhysiciancommentsaboutDS,familyconcerns,andlife-timecare

challenges

Feedback: Physicians and Residents

TopicsAddressed SurveyResults

Participants’Background

Physicians - 78%pediatricians,11%GPs,and11%other(oneregisteredmidwifeandonenaturopathicdoctor);56%workinthecityResidents - specializations:30%neurology,30%generalpeds,10%eachindevelopmentalpeds,cardiology,nephrologyandneonatology;80%saidtheywantedtoworkinthecity

Level ofexperiencewithDS

Physicians - most(94%)havesomeexperiencewithDS; 71% see1-5patientsResidents - ALLactivelyinvolvedinpatientcare;60%attendedlectures/talksaboutDSand30%arefamilymembers/friends;50%seemorethan10patients

VerifyingKnowledgeGap

Physicians - 50%ofpediatriciansandGPs agreeand50%ofGPsstronglyagreethattheyneedmoreinfoaboutDSResidents - 60%agreetheyneedmoreinfoaboutDS;10%disagreed

Physicians:n=18 outof63responded;Residents: n=10outof59responded

Feedback: Physicians and Residents

Topics Addressed SurveyResults

Topicsofinterest Physicians - top threewere:clinicalguidelines(82%),mentalhealth(77%),andadolescentwithDS(77%)Residents - topthreewere:transitionintoadulthood(70%),qualityoflife(50%),andtheadolescentwithDS(50%)

MedicalConditions Physicians - topthreewere:sleepandDS(78%),psychiatricissues(78%),andnutritionandobesity(78%)Residents - topthreewere:epilepsy(70%),neuro-cognitiveissues/decline(50%),andcardiovascularabnormalities(50%)

PhysicianComments QuestionsaboutDS:puberty/adolescence,hypothyroidism,transitions andcommunitysupport,behaviouralmanagement,follow-ups/guidelines/screenings;Familyconcerns:sleepingproblems,nutrition/obesity,adulthoodandbehaviouralissues,longtermcareandindependence,resources/advising,communitysupport

Physicians: n=18 outof63responded;Residents: n=10outof59responded

Feedback: Parents and Families

TopicsDiscussed Parent’sConcernsGuidelines, protocolsandhealthcarechecklists

Waystokeeptrackoflong-termfollow-ups;appointmentsetupforappropriatemedicalscreenings;providemorecommonguidelinesforailmentsandconditions;pushforincreasedvarietyofstandardizedtoolsandpeerreviewedprotocols,supportedbyresearch;includemoreelectronicfilesandnotificationsystems

Medicalconditions Acute care,issuessuchassleepapnea, thyroid,metabolicsyndromes,cardiacfollow-upsaftersurgery,nutritionandaddressingobesity;mostcommonconcerns:Mentalhealth,Dementiaanddieting/nutrition

Approachtocare Keep familiesinformedaboutDSresearchresults;focusonpreventativecareinadultpopulationofDS;helpphysiciansbecomeknowledgeableabouthealthprograms/supportsand understandhowtocommunicatewellwithpatientswithDS;establishrapportandtrustwithpatient

Feedback: Parents and Families

TopicsDiscussed Parent’sConcerns

Resources needed Infantdevelopment andotherhealthcareprograms;resourcesandknowledgefromthecommunity;informationaboutsexuality;informationaboutadultcare/independence

Transitions Whathappensbetweenmajormilestones (pre-school,inschool,outofschooletc.);waystokeepupwithage-appropriateresources(medicalandcommunity);continuecareinelderlyDS;transitiontoGPfromPeds

LearningaboutDS Families learnedmostfromotherfamiliesandcommunitysupportgroups;foundthatknowledgeaboutDSmaybelackingfromphysicians,especiallyfromGPs

Conclusion

mYourDownSyndrome.org was formed to address theknowledge gap for Down syndrome in health care, andto provide a streamlined method of informationgathering for physicians, patients, and parents.