So You Want to Start a Down Syndrome Clinic?

Transcription

1 So You Want to Start a Down Syndrome Clinic? Lessons Learned and Pitfalls to Avoid: Our 20 year Experience running a Down Syndrome Clinic in Ottawa, Canada Dr Mary Pothos, Dr Asha Nair, Dr Rob Laberge

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4 Children s Hospital of Eastern Ontario CHEO is a tertiary pediatric hospital in Ottawa, serving a regional population of 1.5 million CHEO s catchment includes Western Quebec as well as Eastern Ontario The vast majority of children with DS in CHEO s catchment area are followed in the DS clinic at CHEO

5 Ottawa, Ontario, Canada

6 Down Syndrome Clinic Have followed 455 patients in total since inception in females -249 males Currently there are 350 active patients 157 females -193 males Of our 105 inactive files (>2 years of inactivity) 93/105 are over age (>18-20 years old/transitioned) 6/105 have relocated 4/105 are deceased 2/105 lost to follow up Very few patients stop coming to their regular DS clinic appointments

7 DS Clinic Process Frequency of medical assessments (60-90 min) 1 st year: every 4 months 2 to 4 years: every 6-9 months > 4 years: yearly if medically stable, more frequently if active medical needs All patients are followed by community family doctor s or pediatricians for primary care Therapy support obtained from OCTC Social worker Psychology Infant Development PT, OT, SLP Behavior Management

8 OCTC Therapy Visits Social worker meets parents for initial counseling re diagnosis and assesses need and eligibility for special services and funding agencies Infant development worker sees within 3 months and then every 2-4 weeks Starting at 3 4 months of age and depending on need Physiotherapy every 4-8 weeks until ambulating Occupational therapy every 4-8 weeks until school age Earlier if there are feeding issues SLP starting age months until school age

9 Our Clinic Staff 3 part-time pediatricians 1 developmental pediatrician 2 general pediatricians Provide 4-6 half day clinics/week each visit min 2 part-time nurse case managers Half/day per week dietician support Developmental support from Ottawa Treatment Centre (OCTC): Social worker Infant Developmental Services Physiotherapist Occupational Therapist Speech and Language Pathologist Behavioral Services Psychologist Augmentative Communication Services Volunteer Self Advocate

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11 Our Clinic Staff Pediatricians Nurse Case Managers Dietician Receptionist Volunteer Self Advocate Dr Laberge, Dr Nair, Dr Pothos Lyne Tremblay, Lynn Rastelli Rafael Caron-Marquis Joanne Matton Ken Pearson Jeremy Abramson

12 How We Got Started Clinic initiated in 1992 in order to meet the complex needs of children with DS in our region Goals: to provide standard of care as per health preventative guidelines (this wasn t being done systematically in our region) to provide multidisciplinary care with one main point of contact for these families who had multiple providers

13 How We Got Started We received support from the chair of pediatrics and nursing CHEO Started with 1 part-time pediatrician 0.5 allocated nurse case manager 0.1 dietician Made contact with all relevant subspecialists (Neonatal nurseries, ENT, Opthalmology, Cardiology, Respirology, Radiology, GI, Sleep lab) To ensure everyone was aware and on board with following the preventative guidelines for standard of care for DS population Everyone interested and keen re enhanced clinical care some collaborative research opportunities identified at this time

14 How We Got Started Initially clinic space shared with developmental services therefore easily able to liaise with SW, PT, OT, SLP, Psychology This provided enhanced communication around patients and understanding of patient/family priorities and needs Therapy visits and Medical assessments not done at same time as this was felt to be too lengthy for the younger patients Team meetings were held weekly with therapists to review progress on individual patients The numbers are such that this is no longer feasible so team conferences are held for problematic patients or with individual therapists as needed

15 Down Syndrome Clinic The vast majority of children in CHEO s catchment area with Down syndrome are followed in our clinic throughout their childhood and adolescence and families see us regularly Reasons for this: Most referrals are sent in the newborn period Clinic well known by region s nurseries and genetics Good visibility within the hospital due to initial contacts If a patient sees a subspecialist and hasn t been seen in DS Clinic the patients are referred to DS Clinic Word of Mouth: Clinic well known in the larger community of Eastern Ontario Invited speaker to parent conferences local, provincial and national Although the vast majority of clinic patients are from the CHEO catchment, many families travel annually from far distances to get our input Not many comprehensive DS clinics in Canada Pediatricians and family doctors value our input Parents value the one point of care contact get answers to their questions and issues streamlined often with one phone call to our nurses

16 Patient Numbers Active patients 0-2 years---41 patients 2-5 years---53 patients 5-13 years patients 13-adult---94 patients Number of patients fairly stable over last several years Ages Ages Ages Ages Ages Ages Ages Ages Ages

17 Nursing Role New Referrals Pre Clinic Chart Review Medical Encounter Post Clinic Wrap Up Primary point of contact phone service

18 Nursing Role New Referrals Initial telephone contact Welcome and congratulate families Ensure families have appropriate resource information (Neonatal DS package, contact info for local DSA and national CDSS) Explain referral process and submit referrals to subspecialties based on DS preventative health guidelines (Cardiology, ENT, Opthalmology) Our nurses have medical directives to do this Refer to appropriate developmental services Explain that they are the primary point of care (contact person) for parent queries re DS issues

19 Nursing Role Pre Clinic Chart Review Review medical chart Highlight recent appointments by subspecialists Highlight most recent bloodwork results and other test results (eg sleep studies) Ensure follow ups have been kept as per DS preventative guidelines

20 Nursing Role Pre Clinic Chart Review This is how we ensure the multidisciplinary appointments are up to date Difficult for physician to ensure all this is up to date at the time of appointment (time consuming) Parents have multiple appointments and often don t remember when the last follow ups happened

21 Nursing Role Clinic Medical Encounter Obtain weight, height, HC, vitals Obtain medication profile Record current parental concerns Perform systematic review of systems (see sheets)

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25 Medical Encounter Form Questions are based on preventative medical guidelines Questions are systematic and probe parents re relevant issues Helps obtain important information in a systematic consistent fashion Serves as an educational point for parents re important symptoms in each system category Eg; patient with unrecognized OSA symptoms

26 Nursing Role Post Clinic Wrap Up Ensure f/u DS Clinic appointment made Ensure necessary consultations are sent Ensure that parents contact the necessary services needed for follow up Liase with necessary services to ensure timely follow up when needed

27 Nursing Role Other important roles Timely response to parental telephone queries (within hours of contact this is key) Our nurses have developed quite an expertise in dealing with common parent queries for this population and can answer most queries with minimal support from us Completion of standard forms and letters, ie disability tax credit, disability pension forms, completion of school and camp forms, completion of school letters requesting support

28 Physician Role Review information obtained by nurses Concentrate on concerns raised by parents or nurses Perform developmental assessment Perform physical exam Have more time to counsel parents around medical, developmental and behavioral issues as nurses have completed systematic review Also provide counseling re anticipatory guidance Developmental milestones, behavioral issues Medical issues to anticipate at different ages Initiation of school, Preparing for adolescence Transitioning to high school Transitioning to adult services

29 Useful Tips Hire dedicated, highly motivated and qualified staff that are committed and enjoy working with this population We have had little staff turnover which means we have staff who have developed a high level of expertise about Down syndrome and translate this to families Motivated staff will go the extra mile for the families

30 Useful Tips Develop parent handouts that reinforce recommendations for common topics Eg; constipation, appropriate diet for age, behavioral issues, nutritional deficiencies, pubertal issues, etc. Make contact and develop relationship with your local DS Association They provide parent groups and support for families They will send parent representative to meet new families Provided special equipment for clinic eg: clinic desk/chair, cabinet and toys Provide Down Syndrome books for resource library Provide quarterly newsletters to share with parents in clinic Provide announcements re activites of interest for children with DS in our region

31 Useful Tips Develop relationships with regional newborn nurseries We have given presentations on a positive and balanced disclosure of Down Syndrome to our newborn nurseries (for staff, residents and nurses) Over the years we have subsequently noticed parents are much more satisfied with early disclosure Ensure they have up to date resources on Down Syndrome Newborn DS packages from our local DS Association are distributed with useful handouts and local DSA and national (CDSS) contact information

32 Useful Tips Make contact and develop/maintain relationships with subspecialists and therapists in your region/hospital Give in-services to keep them up to date on new guidelines or updates re DS This will ensure they have common goals for care of your patients

33 Useful Tips Have volunteers help with clerical work We are fortunate to have an extraordinary volunteer Mr Ken Pearson He was instrumental in the development and ongoing maintenance of our patient database Does all our medical filing and data entry for patient database Instrumental in organizing handouts and parent packages Have self advocates help with patients in clinic and clerical work Bring patients to rooms, assist with needs Help with filing, photocopy handouts, collate parent packages Have medical students who need research experience help with chart reviews, data retrieval, research projects

34 Pitfalls Lack of allied health resources If we were to start over again we would ask for social work, psychology and education liaison support directly to work with us in the DS clinic Large catchment area Variable pediatric therapy expertise and input in different areas that we serve Different catchment area for CHEO and OCTC Makes provision of therapy input difficult and not standard frustrating for parents who have a common network through DSA-NCR

35 Pitfalls We are able to deliver medical care at a high standard but have not been as successful in providing the educational, behavioral, psychosocial and vocational support our patients need Need more multidisciplinary support from various areas to make this work

36 Pitfalls Transition to adult services and care not seamless Not the same level of care available for adults We are quite lucky to have one of the few Adult DS Clinics worldwide Parents may have become too dependent on our timely service and probably can resolve some of their issues without our input This is a problem now when our nursing and administrative resources are stretched due to financial constraints

37 Conclusions Overall we feel we have enhanced the medical care for children with Down Syndrome in our region This has been a very rewarding and satisfying experience

38 Acknowledgments Many thanks to our staff who couldn t be here today: Nurse Case Managers: Lyne Tremblay, Lynn Rastelli Dietician: Rafael Caron-Marquis Receptionist: Joanne Matton Volunteer: Ken Pearson Administrative Assistants: Joanne Blagdon, Patti Graziano

39 Contact Information Address: 401 Smyth Rd, Ottawa, Nurses Ontario, Canada, K1H 8L1 Telephone: ext 2825/ 3980 Pediatricians Telephone: ext

40 Thank you for your attention Any questions?