Learning Primary Health Learning Primary Health Care Care to Serve Adults to Serve Adults with with Developmental Developmental DisabilitiesDisabilities

CPHA 2008 Annual ConferenceCPHA 2008 Annual Conference

Halifax, N.S.Halifax, N.S.

Brian Hennen, MD MA CCFP FCFP FRCGPBrian Hennen, MD MA CCFP FCFP FRCGP

Professor of Family Medicine, Dalhousie University Professor of Family Medicine, Dalhousie University

BackgroundBackground

• Ontario committed to closing last three large Ontario committed to closing last three large remaining institutions serving as residences remaining institutions serving as residences for persons with Developmental Disabilitiesfor persons with Developmental Disabilities

• Significant advocate support but also Significant advocate support but also pushback from many present residents & pushback from many present residents & their families as well as stafftheir families as well as staff

• Ministries of Community and Social Services Ministries of Community and Social Services and Health and Long Term Planning wish to and Health and Long Term Planning wish to ensure smooth deinstitutionalization processensure smooth deinstitutionalization process

Background (cont’d)Background (cont’d)

• Concerned practitioners, administrators Concerned practitioners, administrators and academics aware of the need to and academics aware of the need to support primary care providers to whom support primary care providers to whom the residents will be transferredthe residents will be transferred

• See opportunity to improve primary care See opportunity to improve primary care to all persons with Developmental to all persons with Developmental DisabilitiesDisabilities

• See opportunity to strengthen health See opportunity to strengthen health professional education programs in professional education programs in Developmental DisabilitiesDevelopmental Disabilities

Steering CommitteeSteering Committee

William Sullivan (chair), Elspeth William Sullivan (chair), Elspeth Bradley, Tom Cheetham, Richard Bradley, Tom Cheetham, Richard Denton, Greg Gillis, Maria Gitta, John Denton, Greg Gillis, Maria Gitta, John Heng, Brian Hennen, Barry Isaacs, Jo-Heng, Brian Hennen, Barry Isaacs, Jo-Anne Jackson-Thorne, Marika Anne Jackson-Thorne, Marika Korossy, Yona Lunsky, Shirley Korossy, Yona Lunsky, Shirley McMillan, Leeping Tao.McMillan, Leeping Tao.

Steps ForwardSteps Forward

• Acquire financial support for programAcquire financial support for program

• Plan Colloquium of Involved Disciplinary Plan Colloquium of Involved Disciplinary Experts to Develop Clinical Practice Guidelines Experts to Develop Clinical Practice Guidelines (CPG’s) and Practice Tools (lit searches, (CPG’s) and Practice Tools (lit searches, position papers, discussion, consensus)position papers, discussion, consensus)

• Consult Experts on Guideline DevelopmentConsult Experts on Guideline Development

• Publish CPG’s in Peer-reviewed JournalPublish CPG’s in Peer-reviewed Journal

Steps Forward (cont’d)Steps Forward (cont’d)

• Develop Training Program ProposalDevelop Training Program Proposal

• CFPC (Mainpro-C), RCPSC study creditsCFPC (Mainpro-C), RCPSC study credits

• Fund and implement Training ProgramFund and implement Training Program

• Evaluate Training ProgramEvaluate Training Program

Goal & ObjectivesGoal & Objectives

• To teach primary health care providers To teach primary health care providers the Clinical Practice Guidelines:the Clinical Practice Guidelines:

– 1. promote facility in the use of the CPG’s1. promote facility in the use of the CPG’s

– 2. identify/address barriers to using them2. identify/address barriers to using them

– 3. foster inter-professional learning3. foster inter-professional learning

Learning ObjectivesLearning Objectives

(i)(i) apply new learning in caring for Adults apply new learning in caring for Adults with DD:with DD:

. general issues in primary care (1-7). general issues in primary care (1-7) . physical health (8-17). physical health (8-17) .behavioral/mental health (18-24).behavioral/mental health (18-24)

.specific syndromes.specific syndromes .assess family/community resources.assess family/community resources .institute comprehensive .institute comprehensive

managementmanagement

Learning Objectives Learning Objectives

(ii) Enhance skills:(ii) Enhance skills:

•Apply CPG’s and practice tools to Apply CPG’s and practice tools to individual casesindividual cases

•Communication & rapportCommunication & rapport

•Acquiring informed consentAcquiring informed consent

•Assess/monitor challenging behavioursAssess/monitor challenging behaviours•ScreeningScreening

Learning ObjectivesLearning Objectives

(iii) Assessing attitudes & ethical (iii) Assessing attitudes & ethical approach approach

- Self assessment- Self assessment- Societal assessment- Societal assessment

- Service Systems assessment- Service Systems assessment

- Focus on gaps (resources, transitions, - Focus on gaps (resources, transitions, silos)silos)

Learning Program & Learning Program & MethodsMethods• Reading/discussing CPG’s in workshop in Reading/discussing CPG’s in workshop in

inter-professional small groups (all)inter-professional small groups (all)

• Case presentations (4) staged on websiteCase presentations (4) staged on website

• Regional group, web case discussion (chat Regional group, web case discussion (chat rooms) by individuals, home-based inputrooms) by individuals, home-based input

Learning Methods (cont’d)Learning Methods (cont’d)

• Regional teleconference, home-Regional teleconference, home-based, facilitated discussion, ending based, facilitated discussion, ending in group-developed management in group-developed management plan for each caseplan for each case

• Final workshop (all) Final workshop (all) comparing/discussing management comparing/discussing management plans and evaluating programplans and evaluating program

Four Cases (modules)Four Cases (modules)

• 55 yr f with severe DD, cerebral palsy, and no 55 yr f with severe DD, cerebral palsy, and no genetic diagnosisgenetic diagnosis

• 46 yr m with moderate DD and Down Syndrome46 yr m with moderate DD and Down Syndrome

• 18 mo f suspected of DD, returns at 19 yrs with 18 mo f suspected of DD, returns at 19 yrs with mild DD, sleep disturbance & behaviour problemmild DD, sleep disturbance & behaviour problem

• 18 yr f with mild DD, severe behaviour problems 18 yr f with mild DD, severe behaviour problems and no genetic diagnosisand no genetic diagnosis

Module ParticipantModule Participant

• ““This videoconference is helping me This videoconference is helping me bring things together in my practice. bring things together in my practice. It is helping me to know where to It is helping me to know where to focus my attention. The tools focus my attention. The tools presented have been especially presented have been especially helpful. It has also been able to give helpful. It has also been able to give me information and knowledge that I me information and knowledge that I was not necessarily aware of.” was not necessarily aware of.”

Program EvaluationProgram Evaluation

(1-5 rating (1-5 rating scale)scale)

• Overall:Overall:– 29 % above average29 % above average– 71% excellent 71% excellent

Relevance:Relevance:-- 33% above average-- 33% above average-- 67% very relevant -- 67% very relevant

Program Evaluation (cont’d)Program Evaluation (cont’d)

1-5 rating scale (Disagree/Strongly Agree)1-5 rating scale (Disagree/Strongly Agree)

• Objectives clearly stated 4.35Objectives clearly stated 4.35

• Adequate time/moduleAdequate time/module 3.74 3.74

• Video/conf format enhanced learning 4.34 Video/conf format enhanced learning 4.34

• Format was interactive 4.48Format was interactive 4.48

Program Evaluation (cont’d)Program Evaluation (cont’d)

• Peer feedback helpful 4.61Peer feedback helpful 4.61

• Cases useful in applying CPG’s 4.61Cases useful in applying CPG’s 4.61

• Available resources useful 4.57Available resources useful 4.57

• More confident caring for patients 4.52More confident caring for patients 4.52

Program Evaluation (cont’d)Program Evaluation (cont’d)

• Would like to have spent MORE time on:Would like to have spent MORE time on:

– Each module (n=4)Each module (n=4)– Consent issues (n=3)Consent issues (n=3)– Crisis plans, discussion of tools, assessing Crisis plans, discussion of tools, assessing

autism, cerebral palsy mobility, fetal alcohol, autism, cerebral palsy mobility, fetal alcohol, advanced directives, medications, genetics, advanced directives, medications, genetics, psychological testing, oral care (feeding, psychological testing, oral care (feeding, swallowing), psychiatric management, role of swallowing), psychiatric management, role of nursing specific syndromenursing specific syndrome

Program Evaluation (cont’d)Program Evaluation (cont’d)

Remaining Problematic Issues:Remaining Problematic Issues:

Increasing knowledge, networking with Increasing knowledge, networking with other disciplines, definition discrepancies, other disciplines, definition discrepancies, access to services (Dual Diagnosis, access to services (Dual Diagnosis, Psychological Assessment, Genetics), Psychological Assessment, Genetics), insufficient time and material resources, insufficient time and material resources, support for caregivers in crisis situations, support for caregivers in crisis situations, legal issues of education/care from legal issues of education/care from adolescence to adulthoodadolescence to adulthood

Program Evaluation (cont’d)Program Evaluation (cont’d)

• Recommendations for Improving Recommendations for Improving Program:Program:

– Allow more than 2 wks per module (7)Allow more than 2 wks per module (7)– Send all modules at beginning (2)Send all modules at beginning (2)– Direct guidelines more to OHP’sDirect guidelines more to OHP’s– Periodic updating of CPG’sPeriodic updating of CPG’s– More interactive (I order test & get results)More interactive (I order test & get results)– Raise visibility of programRaise visibility of program

Program Evaluation (cont’d)Program Evaluation (cont’d)

• What tools will be most helpful in practice?What tools will be most helpful in practice?

Comprehensive Health Assessment Program Comprehensive Health Assessment Program (CHAP) (4)(CHAP) (4)

Crisis plan (4)Crisis plan (4)

Periodic Health Assessments (3)Periodic Health Assessments (3)

Checklist for Autism in Toddlers (CHAT) (2)Checklist for Autism in Toddlers (CHAT) (2)

Office Visit Background (2)Office Visit Background (2)

All (2)All (2)

Program Evaluation (cont’d)Program Evaluation (cont’d)

• Suggested Future topics:Suggested Future topics:

Genetic Testing (3)Genetic Testing (3)

Psychological testing (2)Psychological testing (2)

The Aging DD population (2)The Aging DD population (2)

Program Evaluation (cont’d)Program Evaluation (cont’d)

• Other Suggested Topics:Other Suggested Topics:

• advance directives/consent/SDM’sadvance directives/consent/SDM’s

• current cases/dual diagnosis/special dietscurrent cases/dual diagnosis/special diets

• multidisciplinary collaboration/pharmaRxmultidisciplinary collaboration/pharmaRx

• health assessments/health promotionhealth assessments/health promotion

• highly complex cases/crisis planshighly complex cases/crisis plans

• decline in cognitive functiondecline in cognitive function

• staff training/staff assignmentsstaff training/staff assignments

Program Evaluation (cont’d)Program Evaluation (cont’d)

• What attracted your participation?What attracted your participation?

To improve my care to persons with DD To improve my care to persons with DD (6)(6)

To increase my knowledge about DD (6)To increase my knowledge about DD (6)

An interest and wish to be supportive (2)An interest and wish to be supportive (2)

Program Attraction (cont’d)Program Attraction (cont’d)

“ “It was pertinent to my job and brought together the It was pertinent to my job and brought together the health care needs of people with DD without health care needs of people with DD without having to do extensive research on my own”, having to do extensive research on my own”, …….“boss encouraged me”, …….“boss encouraged me”,

an opportunity for well-researched clinical an opportunity for well-researched clinical approaches andapproaches and to meet other professionals in the to meet other professionals in the field,field,

increased deinstitutionalization, aging population, increased deinstitutionalization, aging population,

Program Evaluation (cont’d)Program Evaluation (cont’d)

• 96 % of 22 would be interested in 96 % of 22 would be interested in similar courses in the futuresimilar courses in the future

• 96% of 22 would be interested in 96% of 22 would be interested in participating in a provincial network participating in a provincial network

Case DevelopmentCase Development

• Real cases, modifiedReal cases, modified

• Purposefully selected cases:Purposefully selected cases:– Wide range of topicsWide range of topics– Mixed age, sex, diagnosisMixed age, sex, diagnosis– Overall use of guidelines and toolsOverall use of guidelines and tools

• Suitable for range of primary care Suitable for range of primary care providersproviders

A Case Module Consisted of:A Case Module Consisted of:

• Case description (sequenced sections)Case description (sequenced sections)

• Information re: CPG’s & tools appliedInformation re: CPG’s & tools applied

• Question sets (5) posted at decision pointsQuestion sets (5) posted at decision points

• Group discussion board (up to 15 pages)Group discussion board (up to 15 pages)

• 2-weekly on-line grp discussion (1 hr)2-weekly on-line grp discussion (1 hr)

• Last group discussion mgt. planLast group discussion mgt. plan

• Final all groups mtg. Final all groups mtg. share/discuss/evaluate mgt plans & course share/discuss/evaluate mgt plans & course

Module Evaluations (Example Module Evaluations (Example Module for case 1)Module for case 1)

• Content:Content:– Met stated objectives 4.33Met stated objectives 4.33– Relevant to my practice 4.42Relevant to my practice 4.42– Tools were useful 4.50Tools were useful 4.50

– Overall 4.55Overall 4.55

Module Evaluation (Example Module Evaluation (Example Module for Case 1)Module for Case 1)

Process of DiscussionProcess of Discussion– Time adequate Time adequate 3.82 3.82– Clear presentation, well–timed 3.64Clear presentation, well–timed 3.64– Discussion Board Interactions helped 4.27Discussion Board Interactions helped 4.27– Moderator kept discussion moving andModerator kept discussion moving and timed questions well 4.27timed questions well 4.27– Participants shared in the discussion 4.27Participants shared in the discussion 4.27

– Overall Discussion rating 4.22Overall Discussion rating 4.22

Module Evaluation (Example Module Evaluation (Example module for case 1)module for case 1)

• Website and Videoconferencing:Website and Videoconferencing:– Easy to access website 4.08Easy to access website 4.08– Tech instructions/supports helpful 4.36Tech instructions/supports helpful 4.36– Able to access areas of website 4.25Able to access areas of website 4.25– Able to post comments on website 4.17Able to post comments on website 4.17– Video/conf mtg helped in mgt plan 4.45Video/conf mtg helped in mgt plan 4.45

– Overall web/videoconference rating Overall web/videoconference rating 4.40 4.40

Module Evaluation (Example Module Evaluation (Example Using module with case 1)Using module with case 1)

• Most important thing learned:Most important thing learned:– Getting relationship with patient and caregiverGetting relationship with patient and caregiver– CHAP, periodic health exam, preventive check CHAP, periodic health exam, preventive check

list, management planlist, management plan– GERD managementGERD management– Using the internet for a courseUsing the internet for a course– Specific guidelinesSpecific guidelines– I’ll look more closely at the physical aspectsI’ll look more closely at the physical aspects– Issues of consent Issues of consent

Module Evaluation (Example of Module Evaluation (Example of module for case 1)module for case 1)

One change in learning process to improve it for One change in learning process to improve it for you:you:

-more info at beginning re: web medium-more info at beginning re: web medium

-more time for 1-more time for 1stst case, getting used to web case, getting used to web

-one question not clear -one question not clear

-more interaction on the discussion -more interaction on the discussion

-need to make the time (spent 20 mins/day) -need to make the time (spent 20 mins/day)

-more on Dual Diagnosis-more on Dual Diagnosis

-loosen up timelines -loosen up timelines