Survey results prepared by
Nadia Beyzaei B.Sc. Student
Ipsiroglu Lab BCCH/UBC
Arshdeep Marwaha B.Sc. Student
Ipsiroglu Lab BCCH/UBC
Emmanuel Tse B.Sc. Student
Ipsiroglu Lab BCCH/UBC
Dr. Osman Ipsiroglu MD (FRCPC), PhD, MBA, MAS,
Clinical Associate Professor
Dr. Osman Ipsiroglu Department of Paediatrics, BCCH, UBC
Dr. Linlea Armstrong Department of Medical Genetics, UBC on behalf of the Medical Research Team
Ms. Dawn McKenna & Ms. Pat Hanbury on behalf of the Down Syndrome Research Foundation
Dr. Sylvia Stockler Department of Paediatrics, BCCH, UBC
Core Project Team
3644 Slocan Street ▪ Vancouver, BC ▪ V5M 3E8 Phone: (604) 453-8300 (ext. 8408) ▪ Fax: (**1 604) 453-8338
Robin Friedlander Department of Psychiatry, UBC
Jane Hailey Department of Pediatrics, UBC
Christine Loock Department of Pediatrics, UBC, Downtown Eastside Cluster
Susan Baer Department of Psychiatry, UBC
Nazmudin Bhanji Department of Pediatrics, UBC
Caron Byrne Department of Psychiatry, UBC
Allyson Davey MD, Pediatrician, Interior Cluster
Aven Poynter President of BC Pediatric Society, MD, Pediatrician, Lower Mainland Cluster
Stephanie Stevenson Executive Director of BC Pediatric Society
Paul Thiessen Department of Pediatrics, UBC
Grace Yu Department of Pediatrics, UBC
Susan Fawcett Down Syndrome Research Foundation
Melvin Chan B.Sc. Student, Ipsiroglu Lab BCCH/UBC
Tanjot Singh Department of Medical Genetics, UBC
Karen Derry BCCH/SHHCC/ BC Women’s Hospital
Additional Project Team Members
Advisory Board
Introduction……………………………….…………………….
Demographics, Diagnoses and Development.……
Sleep/Wake Behaviours……………………………………
App Development…………………………………………….
Discussion of Visualization Concepts…………………
Down Syndrome Learning Module……………………
Presenters
Ms. Dawn McKenna on behalf of the Down Syndrome Research Foundation
Nadia Beyzaei B.Sc. Student, Ipsiroglu Lab BCCH/UBC
Dr. Osman Ipsiroglu MD (FRCPC), PhD, MBA, MAS, Clinical Associate Professor
Arshdeep Marwaha & Emmanuel Tse B.Sc. Students, Ipsiroglu Lab BCCH/UBC
Dr. Osman Ipsiroglu MD (FRCPC), PhD, MBA, MAS, Clinical Associate Professor
Dr. Linlea Armstrong Department of Medical Genetics, UBC
Sections 1-3: Demographics, Diagnoses and Development
Of the 364 respondents, the following caregivers responded:
Demographics: Who Responded to the Survey
Mothers 305 84%
Fathers 31 9%
Other Relatives 14 4%
Service Providers 8 2%
Teachers 4 1%
Friends 2 0.5%
Caregiver since birth 1 0.25%
Demographics: Location
BC 256 AB
59 SK
1 ON 31
NF 2
Canadian: 349 Responses
American: 6 Responses
Of the 361 responses, the age range of individuals with DS is as follows:
Demographics: Age Range of Individuals with DS
Oldest (57)
Age Youngest (<1)
Median (11-12)
75 65 55 45 35 25 15 5
Of the 177 responses, the highest level of education out of those who are no longer attending school is as follows:
Secondary School Attended College
Attended University Diploma or Certificate
Home schooled Elementary School
Middle School
33% 9%
3. 3%
2% 1%
1%
1. 2.
3%
4. 5.
6. 7.
Associates Degree Bachelor’s Degree
Other
8. 9.
10.
0% 0%
48%
Too young; Not completed school; PREP Program; Segregated school for children with disabilities
Demographics: Highest Level of Education
Of the 287+ respondents, the following are the services being utilized:
Demographics: Services
Service Currently
n (%)
In the past year n (%)
Over 12 months ago
n (%)
Has never attended
n (%)
Community Health Services (e.g. Public Health Unit)
27 (9) 80 (27) 110 (37) 70 (23)
Speech Language Pathology 182 (53) 48 (14) 97 (28) 11 (3)
Occupational Therapy 98 (30) 64 (19) 117 (35) 46 (14)
Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)
Sleep Counselling 13 (5) 30 (10) 30 (11) 205 (71)
Behavioural Counselling 21 (7) 12 (4) 56 (19) 194 (67)
Psychologist 13 (5) 23 (8) 51 (18) 189 (66)
Infant Development Program 46 (14) 25 (8) 222 (69) 19 (6)
Daycare 69 (23) 11 (4) 102 (33) 118 (39)
Service Currently
n (%)
In the past year n (%)
Over 12 months ago
n (%)
Has never attended
n (%)
Community Health Services (e.g. Public Health Unit)
27 (9) 80 (27) 110 (37) 70 (23)
Speech Language Pathology 182 (53) 48 (14) 97 (28) 11 (3)
Occupational Therapy 98 (30) 64 (19) 117 (35) 46 (14)
Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)
Sleep Counselling 13 (5) 30 (10) 30 (11) 205 (71)
Behavioural Counselling 21 (7) 12 (4) 56 (19) 194 (67)
Psychologist 13 (5) 23 (8) 51 (18) 189 (66)
Infant Development Program 46 (14) 25 (8) 222 (69) 19 (6)
Daycare 69 (23) 11 (4) 102 (33) 118 (39)
Service Currently
n (%)
In the past year n (%)
Over 12 months ago
n (%)
Has never attended
n (%)
Community Health Services (e.g. Public Health Unit)
27 (9) 80 (27) 110 (37) 70 (23)
Speech Language Pathology 182 (53) 48 (14) 97 (28) 11 (3)
Occupational Therapy 98 (30) 64 (19) 117 (35) 46 (14)
Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)
Sleep Counselling 13 (5) 30 (10) 30 (11) 205 (71)
Behavioural Counselling 21 (7) 12 (4) 56 (19) 194 (67)
Psychologist 13 (5) 23 (8) 51 (18) 189 (66)
Infant Development Program 46 (14) 25 (8) 222 (69) 19 (6)
Daycare 69 (23) 11 (4) 102 (33) 118 (39)
Service Currently
n (%)
In the past year n (%)
Over 12 months ago
n (%)
Has never attended
n (%)
Community Health Services (e.g. Public Health Unit)
27 (9) 80 (27) 110 (37) 70 (23)
Speech Language Pathology 182 (53) 48 (14) 97 (28) 11 (3)
Occupational Therapy 98 (30) 64 (19) 117 (35) 46 (14)
Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)
Sleep Counselling 13 (5) 30 (10) 30 (11) 205 (71)
Behavioural Counselling 21 (7) 12 (4) 56 (19) 194 (67)
Psychologist 13 (5) 23 (8) 51 (18) 189 (66)
Infant Development Program 46 (14) 25 (8) 222 (69) 19 (6)
Daycare 69 (23) 11 (4) 102 (33) 118 (39)
Service Currently
n (%)
In the past year n (%)
Over 12 months ago
n (%)
Has never attended
n (%)
Community Health Services (e.g. Public Health Unit)
27 (9) 80 (27) 110 (37) 70 (23)
Speech Language Pathology 182 (53) 48 (14) 97 (28) 11 (3)
Occupational Therapy 98 (30) 64 (19) 117 (35) 46 (14)
Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)
Sleep Counselling 13 (5) 30 (10) 30 (11) 205 (71)
Behavioural Counselling 21 (7) 12 (4) 56 (19) 194 (67)
Psychologist 13 (5) 23 (8) 51 (18) 189 (66)
Infant Development Program 46 (14) 25 (8) 222 (69) 19 (6)
Daycare 69 (23) 11 (4) 102 (33) 118 (39)
Of the 364 responses, 97% of individuals with DS have a primary physician:
Demographics: Primary Physician
Ages 0-18 Ages 19+
Pri
mar
y P
hys
icia
n
Freq
uen
cy o
f V
isit
s
Paediatrician General Practitioner Other
67% 31%
2%
General Practitioner Paediatrician Other
83% 15%
2%
12%
40%
25%
19%
4%
Occasionally
Every 6-12 months
Every 3-6 months
Every 1-3 months
Very frequently
20%
38%
22%
17%
1%
Occasionally
Every 6-12 months
Every 3-6 months
Every 1-3 months
Very frequently
Of the 364 responses, 87% of individuals with DS see a specialized physician:
Demographics: Specialized Physician
Dentist
Cardiologist Developmental Paediatrician
26%
19%
5%
Ophthalmologist ENT
11%
20% Dentist
Cardiologist Endocrinologist
47%
13%
4%
ENT Ophthalmologist
9%
13%
Orthopaedic Surgeon
Developmental Paediatrician Gastroenterologist
29%
13%
6%
Endocrinologist Obstetrician/Gynecologist
9%
15%
Ages 0-18 Ages 19+
Seen
in t
he
Past
Yea
r Se
en 1
2+
Mo
nth
s A
go
Psychiatrist
Endocrinologist Cardiologist
19%
12%
9%
Gastroenterologist Oncologist
11%
16%
Of the 364 responses, the alternative services individuals with DS see are as follows:
Demographics: Alternative Services
Chiropractor 11%
Naturopath 8%
Homeopath 3% Biofeedback 1% Integrative Health Physician 1%
Of the 364 responses, the housing situation of individuals with DS is as follows:
At home with family Home share
In a protected group home With other relatives
With foster parents With a partner
Other
91% 3%
3. 1%
1% 0%
3%
1. 2.
2% 4.
5. 6.
7.
“Lives with: Mother 2 weeks/month; Caregiver 2 weeks/month; Father 2 weekends/month”
“Lives by herself in her own condo and spends weekends with parents” “Shares an apartment with a roommate who is not special needs”
“Living at home but beginning to transition to living in a small condo by herself.”
Demographics: Housing Situation
Of the 363 responses, 94% of caregivers of individuals with DS have a support
system:
Family members Friends
Community Professional Community volunteer
Other
85% 65%
3. 6%
18%
1. 2.
41% 4.
5. Institutional support (e.g. Family support institute, DSRF) 6% Church 2% Parent groups 2% Chid care & Day programs 2%
Demographics: Support Systems
Independent but need some help 42%
Independent (can eat by him/herself) 41%
Needs help 11% Needs to be fed 5% Tube Feeding 1%
Of the 271 responses, the eating habits of individuals diagnosed with DS are:
Development: Self Supporting Skills
Independent 38%
Needs to be helped 31%
Needs to be dressed 29% Don’t know 2%
Of the 271 responses, what are the dressing habits of individuals diagnosed with DS?
Development: Self Supporting Skills
Nighttime Daytime
Uri
ne
Sto
ol
Always: 22% Occasionally: 23%
Always: 28% Occasionally: 14%
Always: 20% Occasionally: 20%
Always: 16% Occasionally: 14%
Of the 271 responses, individuals diagnosed with DS have the following urine or stool incontinence:
Development: Toilet Training
Purpose of Communication Does this Spontaneously
Does this when prompted
Does not do this
Greet 150 (75) 53 (26) 12 (6)
Refuse 173 (86) 7 (4) 19 (3)
Request preferred object/activity 164 (82) 21 (10) 19 (10)
Request information 94 (47) 10 (5) 88 (44)
Acknowledge 101 (50) 39 (19) 54 (27)
Comment 131 (66) 15 (8) 53 (27)
Request Assistance 131 (65) 50 (25) 26 (13)
Request re-occurrence 163 (81) 24 (12) 17 (9)
Purpose of Communication Does this Spontaneously
Does this when prompted
Does not do this
Greet 150 (75) 53 (26) 12 (6)
Refuse 173 (86) 7 (4) 19 (3)
Request preferred object/activity 164 (82) 21 (10) 19 (10)
Request information 94 (47) 10 (5) 88 (44)
Acknowledge 101 (50) 39 (19) 54 (27)
Comment 131 (66) 15 (8) 53 (27)
Request Assistance 131 (65) 50 (25) 26 (13)
Request re-occurrence 163 (81) 24 (12) 17 (9)
Purpose of Communication Does this Spontaneously
Does this when prompted
Does not do this
Greet 150 (75) 53 (26) 12 (6)
Refuse 173 (86) 7 (4) 19 (3)
Request preferred object/activity 164 (82) 21 (10) 19 (10)
Request information 94 (47) 10 (5) 88 (44)
Acknowledge 101 (50) 39 (19) 54 (27)
Comment 131 (66) 15 (8) 53 (27)
Request Assistance 131 (65) 50 (25) 26 (13)
Request re-occurrence 163 (81) 24 (12) 17 (9)
Purpose of Communication Does this Spontaneously
Does this when prompted
Does not do this
Greet 150 (75) 53 (26) 12 (6)
Refuse 173 (86) 7 (4) 19 (3)
Request preferred object/activity 164 (82) 21 (10) 19 (10)
Request information 94 (47) 10 (5) 88 (44)
Acknowledge 101 (50) 39 (19) 54 (27)
Comment 131 (66) 15 (8) 53 (27)
Request Assistance 131 (65) 50 (25) 26 (13)
Request re-occurrence 163 (81) 24 (12) 17 (9)
Development: Expressive Language
Of the 192+ responses, the following are how individuals with DS communicate with their caregivers:
High pain tolerance 49% Challenges with clothing or textures 30%
Likes Leg rubs or leg massages 24%
Of the 271 responses, individuals diagnosed with DS have the following sensory :
Development: Sensory Processing
Swimming Dancing
Hiking Biking
Working out at the gym 25% Yoga 24%
Bowling 17%
Soccer 12% Basketball 12%
Walking 10% Baseball 10%
Gymnastics 7% Golf 6%
Skiing 6% Horseback riding 6%
Skating 5% Hockey 5%
Martial Arts 4%
80% 71%
39% 34%
Of the 271 responses, individuals diagnosed with DS engage in the following physical activities:
Development: Physical Activities
Watch TV 63% Reading 31%
Computer games 16%
Video Games 14%
Listening to music 9%
Watching videos/movies 5%
Solving Puzzles 2%
Painting 2%
Of the 271 responses, individuals diagnosed with DS engage in the following sedentary activities:
Development: Sedentary Activities
Of the 313 responses, 74% of individuals with DS have been hospitalized:
Respiratory Cardiovascular
ENT Gastrointestinal
Immune related Dental
Orthopaedic Urinary system
Eye
61% 2.
10% 10%
8% 6%
6%
5%
5%
1. 17%
3. 4.
5. 6.
7. 8.
9.
Skin 10. 5%
Demographics: Causes of Hospitalization
Demographics: Causes of Emergency Room Visits
Of the 312 responses, 81% of individuals with DS have been to the emergency
room:
Respiratory
Fever
General Respiratory Problems
Vomiting
Asthma Common cold
Orthopaedic issues Skin issues
Diarrhoea
42%
2.
28%
14%
17% 15%
8% 7%
6%
1.
19% 3.
4. 5.
6. Immune related issues 7. 6%
Pneumonia 40%
Demographics: Causes for Surgeries
Tongue 3% Tongue reduction
Nervous 2% C1/C2 fusion
Integumentary 5% Cysts
Other Ear-Related 3%
Ear surgery Hearing device Mastoidectomy
Urinary 2% Bladder/Vesicostomy
Cancer 2% Central line/PICC
4% Biopsy of intestines Digestive
Others Appendix removal IVAD placement Nasal cavity infection Nasolacrimal probing
Nose surgery Pulmonary sequestration
Tracheotomy Vein stripping
4%
Ear Tubes 56% Adenoids/tonsils 43%
Heart 35%
Eyes 15% Dental 11%
Bowel 10% Orthopaedic 8%
Abdominal 6% G-tube insertion 5%
Reproductive 7%
Of the 263 responses, 72% of individuals with DS have had surgery:
The following is a list of the most common conditions of individuals with DS:
Ophthalmic conditions ENT/Respiratory conditions
Cardiovascular conditions Dermatological conditions
Endocrine conditions Sleep diagnoses
Gastrointestinal conditions Orthopaedics conditions
Mental health conditions
46% 2.
35% 34%
26% 22%
21% 18%
14%
1. 39%
3. 4.
5. 6.
7. 8.
9.
Neurodevelopmental conditions 10.
Diagnoses: Top 10 Overview
5%
17%
26%
0-12 13-20 21+
Pe
rce
nta
ge o
f R
esp
on
de
nts
Age Categories
Diagnoses: Mental Health Conditions
Of the 319 responses, 14% of individuals with DS have a mental health
condition:
Of the 316+ responses, the following percentage of individuals with DS have additional neurodevelopmental conditions:
11% (8% confirmed and 3% suspected) have Autism Spectrum Disorder
4% (2% confirmed and 2% suspected) have Attention Deficit Disorder
2% (1% confirmed and 1% suspected) have Tourette’s syndrome
Diagnoses: Neurodevelopmental Conditions
Of the 217 responses, 60% of caregivers use online resources as a source of
information:
Facebook Groups 61
DSRF website 43 Alberta Association for community living 1
Canadian DS Society 35 Medical Publications 2
Google Search 27 e-magazines 2
Lower Mainland DS Society 13 YouTube 2
National DS Society 9 Wikipedia 3
General Blogs 8 Noahsdad.com 3
Edmonton DS Society 7 Fraser Valley DS Society 3
Family Support Institute 6 Simon Fraser Society
Special Olympics Canada 4 for Community living 4
Demographics: Online Resources
Section 4: Sleep/Wake Behaviours
BC 19% AB
36% ON 21%
Of the 316 responses, 22% of individuals with DS have a sleep disorder:
Sleep/Wake Behaviours: Sleep Diagnoses
n=227 n=55 n=29
Sleep/Wake Behaviours: Sleep Disordered Breathing
85% (226 individuals) with DS experience symptoms of sleep disordered breathing:
Mouth breathing Snoring during sleep
Restless sleep/a lot of movement during sleep Breathing pauses during sleep
Bedwetting during sleep Gasping during sleep
69% 64%
3. 36%
19% 18%
1. 2.
51% 4.
5. 6.
22% (71 individuals) with DS have a sleep disorder:
Vs.
Categorical diagnoses:
Descriptive Symptoms:
Confirmed sleep disordered breathing 66% Of these:
Of these:
Suspected sleep disordered breathing 20%
BC 16% AB
31% ON 17%
Categorical Diagnoses:
Sleep/Wake Behaviours: Sleep Disordered Breathing
BC 86% AB
84% ON 81%
Descriptive Symptoms:
Sleep/Wake Behaviours: Sleep Disordered Breathing
Sleep/Wake Behaviours: Insomnia
53% (141 individuals) with DS experience symptoms of insomnia:
Problems falling asleep Wakes up during the night
46% 23%
1. 2.
22% (71 individuals) with DS have a sleep disorder:
Vs.
Categorical diagnoses:
Descriptive Symptoms:
Confirmed insomnia 3% Of these:
Of these:
Suspected insomnia 13%
BC 15% AB
22% ON 7%
Categorical Diagnoses:
Sleep/Wake Behaviours: Insomnia
BC 53% AB
56% ON 41%
Descriptive Symptoms:
Sleep/Wake Behaviours: Insomnia
Sleep/Wake Behaviours: Parasomnias
46% (123 individuals) with DS experience symptoms of parasomnias:
22% (71 individuals) with DS have a sleep disorder:
Vs.
Categorical diagnoses:
Descriptive Symptoms:
Confirmed parasomnias 11% Of these:
Of these:
Suspected parasomnias 8%
Teeth Grinding Sleep Talking/Shouting
Nightmares Getting up Confused/Disoriented
Night Terrors Sleep Walking
46% 27%
3. 8%
5% 3%
1. 2.
12% 4.
5. 6.
BC 4% AB
2% ON 3%
Categorical Diagnoses:
Sleep/Wake Behaviours: Parasomnias
BC 47% AB
44% ON 44%
Descriptive Symptoms:
Sleep/Wake Behaviours: Parasomnias
“Waking up for a scheduled time is difficult, but on days when they can wake up on their own they wake up easily; even though the amount of sleep time is about the same.”
Sleep/Wake Behaviours: Mornings
Of the 267 responses, the level of difficulty, for individuals with DS, to get up in the morning is as follows:
Of the 267 responses, 29% of individuals with DS experience daytime
sleepiness.
Sleep/Wake Behaviours: Daytime Behaviours
[He] seems to get a good sleep, but when he does wake up in the night or has problems falling a sleep, he is not very good for school and regular activities. He is very tired by the end of the day & even too tired to eat dinner. Even on good days when he does gets a good sleep, by the end at school he is tired.”
“My child is used to interrupted sleep. My child does well during the day, but I suspect my child's focus and attention would increase with more restorative sleep.”
Of the 267 responses, 8% of individuals with DS experience daytime
hyperactivity.
What is the QoL of the individual with DS?
On a scale of 0 – 100, (low to high)
Would their QoL change with improved sleep?
What would their QoL change to with improved sleep? On a scale of 0 – 100, (low to high)
Sleep/Wake Behaviours: Quality of Life (QoL)
Yes 32% Average [stdv] 82 [±14]
min/max 24/100
Average [stdv] 88 [±12]
min/max 48/100
QoL of Individual with DS
“I wish we would have been able to do a sleep study years ago. Our daughter could sometimes groan for hours in the night. When she started groaning AND teeth grinding we got her a mouth guard which she loves to wear and it has helped a lot! So the quality of life values were a lot lower back then!!!”
Sleep/Wake Behaviours: Quality of Life (QoL)
What is the QoL of the primary caregiver?
On a scale of 0 – 100, (low to high)
Would their QoL change with improved sleep?
What would their QoL change to with improved sleep? On a scale of 0 – 100, (low to high)
Yes 29% Average [stdv] 80 [±16]
min/max 22/100
Average [stdv] 88 [±13]
min/max 50/100
QoL of Parent/Caregiver
“My son wakes up between 3 and 4 am most nights. Does go back to sleep. My quality of life would improve if this didn't happen as I don't always fall back to sleep.”
Section 5: Feedback & Testimonials
Survey Feedback
“Survey seemed more applicable to parents of older children with more experience, I was not sure how to answer some of the questions that didn't apply due to my child's young age - 'no' or 'I don't know’”
“You did not ask any questions regarding function of daily life such as household chores, ability to follow instructions, etc. I wonder why these were omitted.”
“You don't seem to have captured the age of the individuals to whom this survey pertains. At this point in time, my issues for my granddaughter relate to the aging of an adult with Down syndrome.
Words of Thanks from Participants
Thanks for having this survey, I think it's great and I hope I have been helpful. I
appreciate all the work put into it!! Thanks for working on this. I often
worry that research will dry up as fewer people with DS are born due to early detection testing. I
appreciate the time taken to develop this survey. I hope that it results in more and easier access to
required therapies (such as the Autism community receives), and that its not just another waste of time. thank
you. The survey seemed thorough and I appreciate the time and effort it took to
create a survey specific to Down Syndrome. Thank-you. Wonderful. Easy to do,
and the ability to save as I go is a godsend. I was interrupted countless times by my adorably curious kid. I would
not have finished it otherwise. What a good idea! Thanks for doing this survey. Thank you for putting this together and doing what you can to make life better for people with
Down syndrome and the families who care for them. Thank You, good luck. I hope you have MANY completed surveys to help show a true picture of the health issues of the DS population in BC. WE have to be the voice for them, since many cannot speak for
themselves. Great survey!!! Really excited to hear the results/compilations of what
other parents are saying - hope you send it out. Thank you very much for working toward coordinated care. I greatly appreciate your efforts for my family and many others!
62% (155 respondents) of caregivers of individuals diagnosed with DS would
use a “Down Syndrome app” which tracks symptoms and schedules for physician visits
69% (107 respondents) of caregivers were willing to participate in the
development of such an app
91% (141 respondents) of caregivers were interested in participating
in the testing of such an app once it has been developed
Feedback & Testimonials: App Development
Feedback & Testimonials: DS App Suggestions
1. Suggestions 2. Concerns 3. Future Development
Overview:
Feedback & Testimonials: DS App Suggestions
Medical History
Timeline
Personalized Calendar
Medications & Supplements
Resources
Communication
Feedback & Testimonials: DS App Suggestions
Medical History: tracking records
Medical History
Timeline
Personalized Calendar
Medications & Supplements
Resources
Communication
“Should be easy to look back and see when the child
had an appointment for something specific i.e. ENT, blood work, therapies, eye exam. This makes it easier to make future appointments & remember what has been done.”
“Keeping track of records and letting the caregiver know when specific tests are needed.”
Feedback & Testimonials: DS App Suggestions
Timeline: following development
Medical History
Timeline
Personalized Calendar
Medications & Supplements
Resources
Communication
“There are timeframes when certain ailments are likely to develop or be able to be assessed for (sleep apnea/dyslexia). A feature that alerts parents for what to look for if they are developing would be useful.”
“Common health concerns that are different, bathroom habits tracker, common contacts section, emergency health info section, adjusted growth charts specific to Down syndrome, message board option, links to services based on geography, scheduling tool.”
Feedback & Testimonials: DS App Suggestions
Personalized Calendar: keeping up with appointments
Medical History
Timeline
Personalized Calendar
Medications & Supplements
Resources
Communication
“I am overwhelmed with appointments and have had to find a balance in scheduling. Finding out how many appointments you can handle is key and making sure to not schedule beyond that. So a red flag when you've over scheduled. As well as reminders of upcoming appointments.”
“Make it customizable. My daughter has virtually no health issues, so an app that requires me to constantly bypass all scheduling possibilities to get to the select few I need would be discarded very quickly. An ability to set alarms, and/or send out email or text reminders about appointments would be appreciated.”
Feedback & Testimonials: DS App Suggestions
Medications & Supplements:
Medical History
Timeline
Personalized Calendar
Medications & Supplements
Resources
Communication
“List of all risk factors (checklist), when they should be tested, and by whom. Include a mechanism that would remind you to make appts, follow up, etc. Include an area to track medications, doses, and the chronology (e.g. ear infection in April '15 - Novamoxin 4 ml at 3 x day for 10 days).”
“Some way of tracking vitamins A,C,E,D, Zinc and Iron.”
Feedback & Testimonials: DS App Suggestions
Medical History
Timeline
Personalized Calendar
Medications & Supplements
Resources
Communication
“Common health problems, when supplements are helpful, where to access resources in your area, behaviour suggestions, that Autism is 5 times more likely.”
“Symptoms of sleep apnea, orthotics information & what to look for, reminders for eye & hearing testing and a list of referral doctors as GP may no know who to send you to. List of good referrals for all common problems in DS.”
“A resource link to things about diet, exercise and other developmental tools. Access to employment or volunteer activities for individuals with DS. Parent and teacher packages...”
Resources: links for health & wellness
Feedback & Testimonials: DS App Suggestions
Communication:
Medical History
Timeline
Personalized Calendar
Medications & Supplements
Resources
Communication
“Online doctors that can answer your questions, requisition blood work and regular tests and then get the results.”
“Access to medical/lab test results. A more open communication between all members of the team, family, health care, therapists, community supports. Links to helpful support or services. A checklist”
Feedback & Testimonials: DS App Suggestions
“I would not use an app for health management because I do not trust devices as a permanent method of information storage.”
“I don't think an app would help. Taking humans out of the picture is not my take on this. Educating the professionals on different diagnosis, and being familiar with local resources and at what capacity those resources can be of value would be the direction that in my opinion should be taken.”
DS App Concerns:
Feedback & Testimonials: Future Development
62% of caregivers of individuals diagnosed with DS would use a “Down
Syndrome app” which tracks symptoms and schedules for physician visits
69% of caregivers were willing to participate in the development of
such an app
91% of caregivers were interested in participating in the testing of
such an app once it has been developed
Feedback & Testimonials: App Development
Future Development: Life Trajectory Charts
Future Development: Medication Timeline
Future Development: Sleep Disordered Breathing Example Visualization
85% of individuals with DS experience symptoms of sleep disordered breathing:
Mouth breathing Snoring during sleep
Restless sleep/a lot of movement during sleep Breathing pauses during sleep
Bedwetting during sleep Gasping during sleep
69% 64%
3. 36%
19% 18%
1. 2.
51% 4.
5. 6.
22% of individuals with DS have a sleep disorder:
Vs.
Categorical diagnoses:
Descriptive Symptoms:
Confirmed sleep disordered breathing 66% Of these:
Of these:
Suspected sleep disordered breathing 20%
Future Development: Sleep Logs/Diaries
Future Development: Sleep Logs/Diaries
Section 5: Feedback & Testimonials
Of the 287+ respondents, the following are the services being utilized:
Demographics: Services
Service Currently
n (%)
In the past year n (%)
Over 12 months ago
n (%)
Has never attended
n (%)
Community Health Services (e.g. Public Health Unit)
27 (9) 80 (27) 110 (37) 70 (23)
Speech Language Pathology 182 (53) 48 (14) 97 (28) 11 (3)
Occupational Therapy 98 (30) 64 (19) 117 (35) 46 (14)
Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)
Sleep Counselling 13 (5) 30 (10) 30 (11) 205 (71)
Behavioural Counselling 21 (7) 12 (4) 56 (19) 194 (67)
Psychologist 13 (5) 23 (8) 51 (18) 189 (66)
Infant Development Program 46 (14) 25 (8) 222 (69) 19 (6)
Daycare 69 (23) 11 (4) 102 (33) 118 (39)
Service Currently
n (%)
In the past year n (%)
Over 12 months ago
n (%)
Has never attended
n (%)
Community Health Services (e.g. Public Health Unit)
27 (9) 80 (27) 110 (37) 70 (23)
Speech Language Pathology 182 (53) 48 (14) 97 (28) 11 (3)
Occupational Therapy 98 (30) 64 (19) 117 (35) 46 (14)
Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)
Sleep Counselling 13 (5) 30 (10) 30 (11) 205 (71)
Behavioural Counselling 21 (7) 12 (4) 56 (19) 194 (67)
Psychologist 13 (5) 23 (8) 51 (18) 189 (66)
Infant Development Program 46 (14) 25 (8) 222 (69) 19 (6)
Daycare 69 (23) 11 (4) 102 (33) 118 (39)
Service Currently
n (%)
In the past year n (%)
Over 12 months ago
n (%)
Has never attended
n (%)
Community Health Services (e.g. Public Health Unit)
27 (9) 80 (27) 110 (37) 70 (23)
Speech Language Pathology 182 (53) 48 (14) 97 (28) 11 (3)
Occupational Therapy 98 (30) 64 (19) 117 (35) 46 (14)
Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)
Sleep Counselling 13 (5) 30 (10) 30 (11) 205 (71)
Behavioural Counselling 21 (7) 12 (4) 56 (19) 194 (67)
Psychologist 13 (5) 23 (8) 51 (18) 189 (66)
Infant Development Program 46 (14) 25 (8) 222 (69) 19 (6)
Daycare 69 (23) 11 (4) 102 (33) 118 (39)
Service Currently
n (%)
In the past year n (%)
Over 12 months ago
n (%)
Has never attended
n (%)
Community Health Services (e.g. Public Health Unit)
27 (9) 80 (27) 110 (37) 70 (23)
Speech Language Pathology 182 (53) 48 (14) 97 (28) 11 (3)
Occupational Therapy 98 (30) 64 (19) 117 (35) 46 (14)
Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)
Sleep Counselling 13 (5) 30 (10) 30 (11) 205 (71)
Behavioural Counselling 21 (7) 12 (4) 56 (19) 194 (67)
Psychologist 13 (5) 23 (8) 51 (18) 189 (66)
Infant Development Program 46 (14) 25 (8) 222 (69) 19 (6)
Daycare 69 (23) 11 (4) 102 (33) 118 (39)
Service Currently
n (%)
In the past year n (%)
Over 12 months ago
n (%)
Has never attended
n (%)
Community Health Services (e.g. Public Health Unit)
27 (9) 80 (27) 110 (37) 70 (23)
Speech Language Pathology 182 (53) 48 (14) 97 (28) 11 (3)
Occupational Therapy 98 (30) 64 (19) 117 (35) 46 (14)
Physiotherapy 89 (27) 61 (19) 128 (39) 40 (12)
Sleep Counselling 13 (5) 30 (10) 30 (11) 205 (71)
Behavioural Counselling 21 (7) 12 (4) 56 (19) 194 (67)
Psychologist 13 (5) 23 (8) 51 (18) 189 (66)
Infant Development Program 46 (14) 25 (8) 222 (69) 19 (6)
Daycare 69 (23) 11 (4) 102 (33) 118 (39)
Demographics: Parent Support Groups
Of the 192 responses, 53% of caregivers of individuals with DS are part of a
parent support group:
In-person community group 83%
Facebook group 56%
Of the 217 responses, 60% of caregivers use online resources as a source of
information:
Facebook Groups 61
DSRF website 43 Alberta Association for community living 1
Canadian DS Society 35 Medical Publications 2
Google Search 27 e-magazines 2
Lower Mainland DS Society 13 YouTube 2
National DS Society 9 Wikipedia 3
General Blogs 8 Noahsdad.com 3
Edmonton DS Society 7 Fraser Valley DS Society 3
Family Support Institute 6 Simon Fraser Society
Special Olympics Canada 4 for Community living 4
Demographics: Online Resources
Sad 47
Shocked 43
Scared 36 Emotional 7
Devastated 28 Hope 7
Worried 22 Disappointed 7
Overwhelmed 18 Unsure 7
Confused 17 Grief 7
Upset 16 Acceptance 9
Concern 13 Angry 10
Surprised 11 Love 10
Support 6
Heart Broken 6
Alone 6
Initial Diagnosis: Most Commonly used Descriptors
Of the 220 responses, the following descriptor were most commonly used:
Out of 222 comments:
6% Positive E.g. I recognized the features of Down syndrome when she was handed to me shortly after birth. I was thrilled to have a daughter, not upset about the DS. As the days wore on, the implications and worries grew, but we were decided to look for the positives not the negatives.
6% Neutral E.g. Accepted reality.
76% Negative E.g. Very sad and depressed, and full of disbelief at first, wondering how this could happen to me. This is something that happens to other people, not me- that's how I felt.
12% Mixed feelings E.g. I loved her for who she was but worried about coping with a child with so many issues which would continue throughout her life; worried about how the world would accept her.
Initial Diagnosis: Examples of Emotional States
Types of support (n=133) n (%)
1 Community Support 108 (81)
Focus Groups 31 (29)
Infant Development Program (IDP) 23 (21)
Informational 21 (19)
Community Centres and Organizations 21 (19)
Testimonials/Previous Exposure 13 (12)
Counselling 3 (3)
Other Programs 2 (2)
Initial Diagnosis: Support System
These are the means through which parents/caregivers of individuals with DS receive support:
Of the 220 responses, 57% of caregivers received enough support as a source
of information.
Initial Diagnosis: Support System
Types of support (n=133) n (%)
2 Family/Friends 60 (45)
3 Health Care Professionals 49 (37)
GP/Family Doctor/Paediatrician 18 (37)
Nurse 15 (31)
Geneticist 7 (14)
Mid wife 6 (12)
Social Worker 3 (6)
4 Religion/Faith 7 (5)
5 Bonding with newborn 5 (4)
These are the means through which parents/caregivers of individuals with DS receive support:
Initial Diagnosis: What was lacking?
Of the responses, 36% of caregivers felt a lack of support:
Lack of support (n=90) n (%)
1 Emotional support (e.g. compassion, empathy) 45 (50)
From healthcare professionals 23 (51)
Unspecified 22 (49)
2 Information regarding DS 42 (47)
From healthcare professionals 15 (36)
Unspecified 27 (64)
3 Support groups (e.g. contact with other parents who had children with DS) 18 (20)
4 Family and friends 6 (7)
Initial Diagnosis: What was lacking?
Types of support (n=35) n (%)
1 Poor presentation of diagnosis 13 (37)
Negative tone 8 (62)
Other concerns (e.g. Lack of resources, support, poor timing) 5 (38)
2 Lack of detailed knowledge on DS provided 6 (17)
3 Lack of additional support (e.g. counsellors, psychiatrist) 5 (14)
4 Inappropriate advice given 4 (11)
5 Concerns of parents dismissed 3 (9)
6 Out-dated information provided 2 (6)
Of the responses, 17% of caregivers felt a lack of support from health care
professionals:
: