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Evaluation of the Canadian Paediatric Surveillance Program

APPENDIX 6 - Survey results

Participants

Response rate: 47.5% (1105/2326)

Section 1

Q1. CPSP provides program participants with study protocols, case definitions and biannual educational resource articles. How useful is this material (circle one number for each type of material)?
 
 
No Help
at all
Slightly Helpful
Fairly Helpful
Very Helpful
Study protocol n = 1043
69 (6.6%)
267 (25.6%)
444 (42.6%)
263 (25.3%)
Biannual educational resource articles n = 934
64 (6.9%)
292 (31.2%)
385 (41.1%)
193 (20.8%)
Q2. Have the study-related materials changed your clinical practice?
 
 
n = 1019
Yes
170 (16.7%)
No
858 (83.3%)
 
Comment
n (%)
Increase alertness/awareness
62 (47%)
Diagnostic criteria
17 (13%)
Specimens/testing
8 (6%)
Management/therapy
7 (5%)
Education
2 (1%)
Miscellaneous responses
36 (27%)
Q3. Level of awareness/use of CPSP information sources
 
 
Never
Some
Often
Don’t Receive or Access
CPSP Highlights in the CPS journal Paediatrics and Child Health* (n = 1075)
59 (5.5%)
227 (21.1%)
742 (69.0%)
47 (4.4%)
CPS News (CPSP article)* (n = 1044)
141 (13.5%)
354 (33.9%)
441 (42.2%)
108 (10.3%)
CPSP Annual Report (Results) (n = 1056)
160 (15.2%)
460 (43.6%)
385 (36.5%)
51 (4.8%)
Concurrent session at the CPS annual meeting* (n = 1028)
446 (43.4%)
339 (33.0%)
86 (8.4%)
157 (15.3%)
Scientific meetings, conferences and congresses (n = 1043)
295 (28.3%)
481 (46.1%)
174 (16.7%)
93 (8.9%)
CPSP Website (n = 1042)
441 (42.3%)
353 (33.9%)
103 (9.9%)
145 (13.9%)
Canada Communicable Disease Report (n = 1044)
304 (29.1%)
444 (42.5%)
149 (14.3%)
147 (14.1%)

* sent to CPS non-members
Q4. What proportion of the CPSP monthly forms that you have received have you returned?
 
 
n = 1099
All
749 (68.1%)
Most
304 (27.7%)
Some
36 (3.3%)
None
11 (1.0%)
Q5. Would you return the form if it was not postage-paid?
 
 
n = 1079
Yes
438 (40.6%)
No
641 (59.4%)
Q6. Do you think the number of conditions on the form should?
 
 
n = 1045
Increase
204 (19.5%)
Stay the same
732 (70.0%)
Decrease
109 (10.4%)
Q7. Are you aware that CPSP collects only non-nominal, non-identifiable data?
 
 
n = 1086
Yes
776 (71.3%)
No
312 (28.7%)
Q8. Have you ever known of a case but returned the form without reporting it?
 
 
n = 1101
Yes
37 (3.4%)
No
1064 (96.6%)
Q9. Have you ever known of a case and not returned the form?
 
 
n = 1100
Yes
20 (1.8%)
No
1080 (98.2%)
Q10. Have you considered conducting a study through the CPSP?
 
 
n = 1068
Yes
101 (9.5%)
No
967 (90.5%)

Study suggestions (n = 56)

  • abdominal wall defects
  • acetaminophen toxicity
  • agenesis of the corpus callosum
  • animal bites
  • apnea of prematurity
  • autism/autism spectrum disorders
  • Barth syndrome
  • Batten disease
  • bilirubin encephalopathy
  • brachial paralysis injury
  • child abuse
  • chronic idio pathic urthicaria in children
  • congenital diaphragmatic hernia
  • congenital varicella
  • coronary events on stimulants
  • cytomegalovirus (CMV)
  • death attributable to anorexia nervosa
  • fetal alcohol syndrom
  • fire arms related injuries
  • fragile X in girls
  • Friedreich ataxia/spinal amyotrophy
  • Gilles de la Tourette syndrome
  • glycogenesis type IV
  • haemolytic disease of the newborn
  • herpes zoster/varicella immunization
  • histiocytic disorders
  • HIV in-vitro exposure
  • HIV/hepatitis
  • hyponatremia
  • interstitial lung disease/emphy sema
  • iron deficiency anaemia in preschoolers/toddlers
  • Kawasaki disease
  • listeria neonatal infection
  • long QT interval/arrhythmia
  • maternal lupus & cardiac arrhythmias
  • migraine
  • myocarditis
  • Munchausen by proxy
  • neonatal diabetes
  • neurological outcome of hypernatremic dehydration
  • obesity in children
  • omphalitis
  • palliative care treatment
  • performance enhancing drugs in teens
  • portal and renal vein thrombosis
  • pyridoxine deficiency
  • rubella panencephalitis
  • Rubenstein-Taybi syndrome
  • shaken baby syndrome
  • SIDS
  • sleep apnea
  • sudden deaths in Prader Willi Syndrome
  • type 1 diabetes/hyperlipidemia
  • unexplained pain
  • white matter disease in aboriginal children
  • with drawal of life sustaining treatment in newborns
Q11. Identify the broad category that describes your clinical practice
 
 
n = 1091
General paediatrics
606 (55.5%)
Subspecialty paediatrics
485 (44.5%)
 
Sub speciality** (n = 465)
n (%)
Develop mental/behavioural
61 (13%)
Neonatology
59 (12%)
Emergency medicine
41 (9%)
Allergy/asthma
32 (7%)
Endocrinology
25 (5%)
Neurology
23 (5%)
Haematology/oncology
23 (5%)
Infectious diseases
22 (4%)
Cardiology
22 (4%)
Genetics
21 (4%)
Adolescent medicine
16 (3%)
Respiratory
13 (2%)
Miscellaneous (reported less than 10 times)
107 (23%)

** self selected
Q12. Do you report as:
 
 
n = 1089
Individual
1019 (93.6%)
Member of a group
70 (6.4%)
Q13. Would you be willing to report cases by phone/fax if an important public health reason was provided?
 
 
n = 1085
Yes
996 (91.8%)
No
89 (8.2%)
Q14. Do you have access to email?
 
 
n = 1089
Yes
980 (90.0%)
No
109 (10.0%)
Q15. Would you be willing to respond monthly by email or web-based tool?
 
 
n = 1081
Yes
727 (67.3%)
No
354 (32.7%)
Q16. Comments
  Not presented in this document
Q17. How many cases have you reported to the CPSP?
 
n = 1086
n (%)
No cases
574 (53%)
One case
269 (25%)
Two cases
151 (14%)
Three or more cases
92 (8%)

Section 2: Participants who have previously reported

Q1. Was the questionnaire easy to complete?
 
 
n = 466
Yes
372 (79.8%)
No
94 (20.2%)
 
Comments n = 105
n (%)
Questionnaire too detailed/time consuming
40 (38%)
Had to complete chart review
21 (20%)
Case already report/questionnaire completed
8 (7%)
Miscellaneous responses
36 (4%)
Q2. Was the case-specific data generally available?
 
 
n = 451
Yes
373 (82.7%)
No
78 (17.3%)

Comments - similar to those provided for Q1.
Q3. Do you have any hesitation providing clinical information to research conducted through the CPSP?
 
 
n = 471
Yes
39 (8.3%)
No
432 (91.7%)
 
Comments n = 22
n (%)
Need for consent
5 (23%)
Query about ethics approval
3 (13%)
Miscellaneous
14 (64%)

Public health professionals

Response rate: 46% (26/56)

Q1. The broad category that best describes your area of work is:
 
 
n = 26
Public health
13 (50.0%)
Infectious diseases
10 (38.5%)
Non-governmental Agency
0
Other*
3 (11.5%)

* did not specify
Q2. How much involvement in health of children and youth?
 
 
n = 26
< 25%
10 (38.5%)
25-49%
8 (30.8%)
50-74%
5 (19.2%)
75-100%
3 (11.5%)
Q3. Had you heard of the CPSP prior to receiving this questionnaire?
 
 
n = 26
Yes
23 (88.5%)
No
3 (13.0%)
Q4. Information Sources
 
 
Never
Some
Often
Don’t Receive or Access
CPS journal Paediatrics and Child Health (n = 23)
2 (8.7%)
7 (30.4%)
14 (60.9%)
 
CPS News (n = 23)
9 (39.1%)
4 (17.4%)
10 (43.5%)
 
CPSP Annual Report (Results) (n = 23)
6 (26.1%)
3 (13.0%)
14 (60.9%)
 
Concurrent session at the CPS Annual Meeting (n = 23)
16 (69.6%)
3 (13.0%)
1 (4.3%)
2 (13.0%)
Scientific meetings, conferences and congresses (n = 23)
9 (39.1%)
11 (47.8%)
2 (8.7%)
1(4.3%)
CPSP Website (n = 23)
8 (34.8%)
9 (39.1%)
6 (26.1%)
 
Canada Communicable Disease Report (n = 23)
1 (4.3%)
5 (21.7%)
17 (73.9%)
 
Q5. Are you aware of the results of CPSP studies?
 
 
n = 21
Yes
18 (85.7%)
No
3 (14.3%)

Current selection: q3 = 1

Q5 Awareness of CPSP Studies

  • all of the last 3 years
  • anaphylaxis, AFP
  • annual reports/sought out study
  • by feedback and survey
  • for AFP
  • CPS journal
  • HSV neonatal
  • IMPACT
  • through discussions with colleagues
  • vaccination guide
  • via rapports
Q6. Have you used information from research conducted through the CPSP?
 
 
Yes
No
To evaluate public policy (n = 19)
6 (31.6%)
13 (68.4%)
To provide a basis for future research (n = 19)
9 (47.4%)
10 (52.6%)
To guide the planning, implementation and evaluation of programs (n = 21)
15 (71.4%)
6 (28.6%)
For other uses, such as guiding immediate action of public health importance (n = 20)
14 (70.0%)
6 (30.0%)
For continuing professional development and maintenance of competence (n = 20)
12 (60.0%)
8 (40.0%)
Q7. Suggestions for future studies:
 
 
n = 20
Yes
2 (10.0%)
No
18 (90.0%)
Q8. Comments
  PUBLISH IN CJPH

Investigators

Response rate: 45% (24/53)

Q1.
 
n = 24
CPSP PI
9 (37.5%)
CPSP Co-Invest
15 (62.5%)
Q2. Investigators for your study were from:
 
 
n = 24
Only one centre
4 (16.7%)
Different centres
20 (83.3%)
Q3. CPSP involvement during proposal development
 
 
Yes
No
Have informal conversations and/or meetings with CPSP staff (n = 21)
18 (85.7%)
3 (14.3%)
Useful
16 (100.0%)
 
Receive written feedback from the CPSP Steering Committee (n = 19)
17 (89.5%)
2 (10.5%)
Useful
15 (100.0%)
 
Receive independent reviewers’ comments (n = 18)
12 (66.7%)
6 (33.3%)
Useful
11 (100.0%)
 
Q4. Could research have been completed with meaningful results without national case ascertainment?
 
 
n = 23
Yes
No
22 (95.7%)
Don’t know
1 (4.3%)
Q5. Could research have been undertaken nationally without the CPSP (i.e., through another mechanism)?
 
 
n = 22
Yes
7 (31.8%)
No
15 (68.2%)
Q6. Has surveillance through the CPSP resulted in a modification of your original case definition?
 
 
n = 22
Yes
4 (18.2%)
No
18 (81.8%)
Q7a. Did the questionnaire for your study provide adequate information to fulfill your study aims?
 
 
n = 23
Yes
20 (87.0%)
No
3 (13.0%)
Q7b. Could you have obtained adequate information with a shorter questionnaire?
 
 
n = 23
Yes
2 (8.7%)
No
21 (91.3%)
Q7c. The CPSP staff identifies duplicate cases and does not forward questionnaires to subsequent reporting physicians. Would you like to receive duplicate detailed reporting forms?
 
 
n = 23
Yes
9 (39.1%)
No
14 (60.9%)
Q8. Did your CPSP Study meet your stated study objectives?
 
 
n = 119
Yes
18 (94.7%)
No
1 (5.3%)
 
Specify: DATA COLLECTION NOT STARTED
  PROGRAM IN STUDY DESIGN
  PROBLEM IN STUDY DESIGN
  STILL ONGOING
Q9. CPSP study worthiness
 
 
Strongly disagree
Mildly disagree
Neither agree nor disagree
Mildly agree
Strongly agree
Your professional development (n = 21)
 
 
2 (9.5%)
6 (28.6%)
  
13 (61.9%)
Contributing to medical literature (n = 21)
 
 
 
7 (33.3%)
  
14 (66.7%)
Evaluating current medical management/policy (n = 21)
 
 
1 (4.8%)
10 (47.6%)
  
10 (47.6%)
Informing future medical management/policy (n = 21)
 
 
4 (19.0%)
5 (23.8%)
12 (57.1%)
Contributing to prevention policy (n = 21)
 
 
8 (38.1%)
4 (19.0%)
9 (42.9%)
Q10. As a researcher, how often do you review your CPSP study data?
 
 
n = 22
As questionnaires arrive
11 (50.0%)
Quarterly
8 (36.4%)
Annually
3 (13.6%)
Study completion
 
Q11. Have you published your completed study results?
 
 
n = 22*
Yes
6 (27.3%)
No
16 (72.7%)

* not reflective of individual studies as investigators and co-investigators responded from the same study
 
Comments: ABSTRACT, MANUSCRIPT ABSTRACTS/MANUSCRIPT
  DATA UNDER ANALYSIS
  DRAFT SENT IN
  IN PROGRESS
  INCOMPLETE
  NOT COMPLETED
  NOT YET COMPLETE
  ONLY CPSP ANNUAL RPT
  WILL BE SUBMITTING
Q12. Do you think the CPSP fee for doing a study was reasonable?
 
 
n = 17
Yes
13 (76.5%)
No
4 (23.5%)
Fee Comments: TOO HIGH
Q13. Did the CPSP provide information to enable possible collaboration with investigators from other INoPSU?
 
 
n = 20
Yes
13 (65.0%)
No
7 (35.0%)

Steering Committee members

Response rate: 71% (24/34)

Q1. Are you current or past member?
 
 
n = 24
Past
9 (37.5%)
Current
15 (62.5%)
Q2. Which group do you represent?
 
 
n = 24
CPS member
12 (50.0%)
Health Canada
3 (12.5%)
Provincial PH
2 (8.3%)
Academic
1 (4.2%)
Other*
6 (25.0%)

* did not specify
Q3. Are meetings twice a year adequate to decide on projects and review the previous year’s program?
 
 
n = 23
Yes
21 (91.3%)
No
2 (8.7%)
Q4. Rate the format of the meetings
 
 
Very Useful
Useful
Not Useful
Presentations of proposals (n = 23)
19 (82.6%)
3 (13.0%)
1 (4.3%)
Review of letters of intent (n = 23)
14 (60.9%)
9 (39.1%)
 
Presentation of study final results (n = 22)
16 (72.7%)
5 (22.7%)
1 (4.5%)
Q5. Are the meeting arrangements adequate?
 
 
n = 23
Yes
23 (100.0%)
No
 
Q6. How would you rank the mix of committee members in relation to providing feedback to investigators?
 
 
n = 22
Poor
 
Fair
2 (9.1%)
Good
9 (40.9%)
Excellent
11 (50.0%)
Q7. Is there an agency that is not currently represented on the committee that should have a seat?
 
 
n = 23
Yes
4 (17.4%)
No
19 (82.6%)
Q8. Do you find the meeting materials adequate and appropriate?
 
 
n = 23
Yes
23 (100.0%)
No
 
Q9. Do you review the study proposal and complete the study inclusion criteria form prior to the meeting?
 
 
n = 21
Yes
18 (85.7%)
No
3 (14.3%)
Q10. Are the criteria for study inclusion appropriate?
 
 
n = 22
Yes
20 (90.9%)
No
2 (9.1%)
Q11. How would you rank the process for study inclusion?
 
 
n = 23
Poor
 
Fair
2 (8.7%)
Good
17 (73.9%)
Excellent
4 (17.4%)
Q12. How would you rank the quality of the proposals that are submitted?
 
 
n = 23
Poor
 
Fair
3 (13.0%)
Good
17 (73.9%)
Excellent
3 (13.0%)
Q13. In your opinion, do the majority of study proposals fit the aims/objectives of the CPSP?
 
 
n = 22
Yes
22 (100.0%)
No
 
Q14. Does the committee chair allocate enough time for group discussion on each research proposals?
 
 
n = 22
Yes
22 (100.0%)
No
 
Q15. Does a live presentation by the principal investigator improve your under stand ing of the proposed study and impact on your decision to approve/disapprove?
 
 
n = 22
Yes
20 (90.9%)
No
2 (9.1%)
Q16. Does the group discussion following presentations provide you with additional insight?
 
 
n = 23
Yes
23 (100.0%)
No
 
Q18. NOTHING TO DECLARE MOVE TO TOP
  DRAWS INCENTIVES, EMAIL FORM
Q19. SEEMS TO WORK WELL
  WORKING FINE

 

Last Updated: 2005-01-14
Date Modified: 2005-01-14

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