Investigating Pediatricians’ Practice, Knowledge, and Barriers in Diagnosing Cerebral Palsy
Abstract
Highlights
- Not all pediatricians routinely encounter or diagnose children with cerebral palsy (CP) in their practice.
- Less than two-thirds of pediatricians reported diagnosing children with CP despite believing that early diagnosis is important.
- Pediatricians have identified gaps in knowledge, skills, and confidence in diagnosing CP in their practice.
- General pediatricians expressed a desire for a multidisciplinary or collaborative approach to support early diagnosis of CP.
Abstract
1. Introduction
2. Materials and Methods
3. Results
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Demographic Data (Survey 1, n = 76; Survey 2, n = 59) | Survey 1 (No., %) | Survey 2 (No., %) |
---|---|---|
Specialty * | ||
General Pediatrics | 42 (55.3) | 35 (59.3) |
Neonatology | 6 (7.9) | 12 (20.3) |
Developmental Pediatrics | 4 (5.3) | 10 (17.0) |
Emergency Medicine | 5 (6.5) | 1 (1.7) |
Hematology, Oncology, and BMT | 5 (6.6) | 0 |
Rheumatology | 4 (5.3) | 0 |
Critical Care | 3 (3.9) | 6 (10.2) |
Complex Care | 3 (3.9) | 14 (23.7) |
Neurology | 0 | 6 (10.2) |
Genetics | 0 | 2 (3.4) |
Other | 9 (11.8) | 5 (8.5) |
Year pediatric or pediatric subspecialty training completed | ||
Prior to 1980 | 3 (3.9) | 1 (1.7) |
1980–1989 | 7 (9.2) | 2 (3.4) |
1990–1999 | 23 (30.3) | 13 (22.4) |
2000–2009 | 18 (23.7) | 15 (25.9) |
2010 to present | 24 (31.6) | 27 (46.6) |
Unknown | 1 (1.3) | 1 (1.7) |
Practice Setting | ||
Metro (>190,000) | 47 (61.8) | 36 (61.0) |
Urban/Rural (40,001–190,000) | 22 (28.9) | 21 (35.6) |
Rural (10,001–40,000) | 6 (7.9) | 1 (1.7) |
Remote (<10,000) | 1 (1.3) | 1 (1.7) |
Survey 1 (No., %) | Survey 2 (No., %) | |
---|---|---|
Estimated percentage of children in your practice who have CP (survey 1, n = 62) | ||
0% | 14 (18.4) | n/a |
1–10% | 48 (63.2) | n/a |
11–20% | 7 (9.2) | n/a |
21–50% | 5 (6.6) | n/a |
51–100% | 2 (2.6) | n/a |
Estimated number of children with CP seen in avg month (survey 1, n = 62; survey 2, n = 60) | ||
0 | 6 (9.7) | 1 (1.7) |
0–1 | 20 (32.3) | 21 (35.0) |
2–6 | 25 (40.3) | 26 (43.3) |
6–10 | 7 (11.3) | 3 (5.0) |
10+ | 4 (6.5) | 9 (15.0) |
Are you currently diagnosing CP? | ||
Yes (all respondents) (survey 1, n = 57; survey 2, n = 59) | 32 (56.1) | 38 (64.4) |
Yes, (general pediatricians (survey 1, n = 46; survey 2, n = 31) | 27 (58.7) | 18 (58.0) |
At what age do you typically diagnose CP (survey 2, n = 32) | ||
0–2 years | n/a | 23 (71.9) |
3–5 years | n/a | 12 (37.5) |
6–9 years | n/a | 0 |
10+ years | n/a | 0 |
What type of clinician can (survey 1)/should (survey 2) be responsible for making a diagnosis of CP? (select all) (survey 1 n = 57, survey 2, n = 55) | ||
Pediatrician | 51 (89.5) | 28 (50.9) |
Pediatrician, with support from developmental pediatrician or neurologist as needed | n/a | 48 (87.3) |
Pediatrician, with input from PT or OT | n/a | 38 (69.1) |
Neurologist | 56 (98.2) | 40 (72.3) |
Developmental Pediatrician | 53 (93.0) | 39 (70.9) |
Orthopedic surgeon | 26 (45.6) | 11 (20.0) |
General Practitioner | 18 (31.6) | 2 (3.6) |
General practitioner, with support from pediatrician, developmental pediatrician, neurologist as needed | n/a | 9 (16.4) |
Other | 4 (7.0) | 1 (1.8) |
Number Correctly Answered (n, %) | ||
---|---|---|
Survey 1 (n = 58) | Survey 2 (n = 50) | |
Knowledge Questions: True/False | ||
Abnormal brain imaging is required for a diagnosis of CP (F) | 54 (93.1) | 45 (90.0) |
CP is an umbrella term that is not defined by etiology (T) | 52 (91.4) | 43 (86.0) |
Of all children with CP, 40% are born prematurely and 60% are born at term (T) | 39 (67.2) | 17 (34.0) |
Predicting severity of CP is most accurate after age 2 years (T) | 50 (86.2) | 27 (54.0) |
A diagnosis of CP can only be made when the cause of the child’s motor impairment is known (F) | 57 (98.3) | 44 (88.0) |
Evidence supports the early diagnosis of CP (T) | 49 (84.5) | 45 (90.0) |
Clinical exam findings are poor indicator of hip displacement (T) | 42 (72.4) | n/a |
Risk of hip displacement increases from GMFCS level I to V (T) | 55 (94.8) | n/a |
Detection of hip displacement is completed through clinical and radiographical exams (T) | 53 (96.6) | n/a |
Pain always accompanies hip displacement (F) | 57 (98.3) | n/a |
A diagnosis of CP cannot be made before the age of 12 months (F) | n/a | 35 (70.0) |
A diagnosis of CP should be delayed since it increases the mental and emotional stress for caregivers (F) | n/a | 45 (90.0) |
Knowledge Questions: Yes/No | ||
Which underlying causes of motor impairment can result in CP? | ||
Genetic causes (Y) | 42 (72.4) | 37 (74.0) |
Periventricular leukomalacia (Y) | 56 (96.6) | 47 (94.0) |
Spinal nerve injury/spinal cord injury (N) | 19 (67.2) | 41 (82.0) |
Acquired brain injury during the first 2–3 years of life (Y) | 48 (82.8) | 40 (80.0) |
Chromosomal abnormality (Y) | 41 (70.7) | 36 (72.0) |
Metabolic condition (Y) | 43 (74.1) | 36 (72.0) |
Muscular origin (N) | 15 (74.1) | 44 (88.0) |
Congenital cerebral malformation (Y) | 50 (86.2) | 45 (90.0) |
Infection (meningitis/encephalitis) (Y) | 51 (87.9) | 43 (86.0) |
Maternal thyroid deficiency (Y) | 17 (70.7) | 16 (32.0) |
Unknown etiology (Y) | 51 (87.9) | 41 (82.0) |
Perinatal brain injury (Y) | n/a | 49 (98.0) |
Intrauterine infection (Y) | n/a | 45 (90.0) |
Knowledge Questions: Are you familiar with or trained to use | ||
Hammersmith Infant Neurological Examination (HINE) | n/a | 17 (34.7) |
General Movements Assessment (GMA) | n/a | 11 (22.5) |
Test of Infant Motor Performance (TIMP) | n/a | 7 (14.3) |
I am not familiar or trained to use any assessments | n/a | 30 (61.22) |
Responses (n, %) | ||||||
---|---|---|---|---|---|---|
1 (Not at All) | 2 | 3 | 4 | 5 (Very Much) | ||
Survey 1: Rate your level of agreement with the following statement (n = 57) | ||||||
It is more important to know the cause of a child’s motor impairment than to diagnose CP. | 6 (10.5) | 23 (40.4) | 19 (33.3) | 8 (14.0) | 1 (1.8) | |
I prefer not to label children with a diagnosis of CP. | 24 (42.1) | 25 (43.9) | 5 (8.8) | 2 (3.5) | 1 (1.8) | |
I do not think it is my role to diagnose children with CP. | 24 (42.1) | 14 (24.6) | 8 (14.0) | 7 (12.3) | 4 (7.0) | |
Early diagnosis of CP is important for families so that diagnosis-specific treatments can be provided. | 0 (0) | 3 (5.3) | 1 (1.8) | 20 (35.1) | 33 (57.9) | |
Survey 2: Rate your confidence making a diagnosis in the following situations (n = 48) | ||||||
Born premature, delayed development, spasticity | 4 (8.3) | 2 (4.2) | 9 (18.8) | 16 (33.3) | 17 (35.4) | |
Born premature, delayed development, spasticity, PVL on imaging | 2 (4.2) | 4 (8.3) | 4 (8.3) | 12 (25.0) | 26 (54.2) | |
Born premature, delayed development, low tone | 4 (8.3) | 20 (41.7) | 12 (25.0) | 9 (18.8) | 3 (6.3) | |
Born term, delayed development, increased tone | 3 (6.3) | 13 (27.1) | 13 (27.1) | 13 (27.1) | 6 (12.5) | |
Born term, delayed development, low tone | 17 (35.4) | 12 (25.0) | 10 (20.8) | 7 (14.6) | 2 (4.2) | |
Survey 1 (n = 57) and 2 (n = 54): Rate your level of agreement with the following statement | ||||||
Providing a diagnosis of CP is important. | Survey 1 | 0 (0) | 0 (0) | 2 (3.5) | 10 (17.5) | 45 (78.9) |
Survey 2 | 0 (0) | 0 (0) | 5 (9.3) | 10 (18.5) | 39 (72.2) |
Grouped TDF Domains and Behaviour Determinants Impacting Pediatricians in Providing an Early CP Diagnosis (n = 50) | Responses (n, %) |
---|---|
Knowledge, skills, or confidence | |
I am uncertain if the motor delay is due to other diagnoses | 24 (48.0) |
I feel uncertain making a diagnosis for children at a young age (e.g., under 2 years) | 24 (48.0) |
I am concerned about making a false positive diagnosis | 18 (36.0) |
I have difficulty recognizing early motor type, topography, and severity of CP | 16 (32.0) |
I do not have enough knowledge to make a diagnosis of CP | 15 (30.0) |
I do not know what supports are available for the child and family | 13 (26.0) |
I am not sure of the next steps after making a diagnosis | 13 (26.0) |
I prefer to monitor whether the motor delay will improve over time | 11 (22.0) |
I do not feel comfortable diagnosing when I am unable to classify a GMFCS level | 6 (12.0) |
I do not feel comfortable communicating this diagnosis to a family | 5 (10.0) |
Other | 7 (14.0) |
Not applicable | 9 (18.0) |
Environment or systems | |
Access to education/training on CP diagnosis | 21 (42.0) |
Access to therapists (OT or PT) in my community to help inform the diagnosis | 21 (42.0) |
Time required or lack of time to learn about diagnosing CP | 14 (28.0) |
Length of appointment time | 14 (28.0) |
Delayed referrals to specialists due to child not having a family doctor | 13 (26.0) |
No colleagues with expertise/experience to review cases/consult | 10 (20.0) |
Lack of imaging services to support the diagnosis | 9 (18.0) |
My peers and colleagues currently are not providing CP diagnoses | 8 (16.0) |
Patient waitlist length | 6 (12.0) |
No systems in place to triage cases | 5 (10.0) |
Other | 4 (8.0) |
Not applicable | 7 (14.0) |
Other | |
I feel the family wants a diagnosis from a neurologist, developmental pediatrician or other specialist | 21 (42.0) |
I prefer to refer to a specific specialist for diagnosis; I do not think it is my role to provide the diagnosis | 9 (18.0) |
It is not important to have a CP diagnosis in order to treat functionally | 7 (14.0) |
I do not think families are ready for the diagnosis and the burden it will place on them | 4 (8.0) |
I do not think it is important to provide a diagnosis of CP since it will not change the child’s outcome | 4 (8.0) |
I prefer not to use labels like CP | 4 (8.0) |
Other | 7 (14.0) |
Not applicable | 14 (28.0) |
Topic Area (by Domain) | Responses n (%) |
---|---|
Diagnosis | |
Criteria for diagnosing a child with CP using a care pathway | 30 (63) |
Completing the required assessments related to tone and CP | 24 (50) |
Testing to determine the etiological cause of CP | 16 (33) |
Determining a child’s classification levels | 11 (23) |
The different types of CP | 9 (19) |
How to communicate a diagnosis of CP | 9 (19) |
Assessing other areas of development in the context of motor impairment | 6 (13) |
Treatment | |
Assessing and managing tone | 24 (50) |
Next steps after making a diagnosis of CP | 17 (35) |
Assessing and managing pain in children with CP | 15 (31) |
Prognostication of future function after diagnosing CP | 8 (17) |
Identifying children that require hip surveillance | 5 (10) |
Diagnosing and managing sleep problems in children with CP | 5 (10) |
Managing nutrition and feeding problems in children with CP | 5 (10) |
Managing seizures in children with CP | 3 (6) |
Advising families on complementary and alternative medicines | 2 (4) |
Resources | |
Providing families with resources | 21 (44) |
Providing family education on preventative healthcare | 7 (15) |
Other | 2 (4) |
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Wong, V.; Miller, S.D.; Scoten, O.; Cohen-Eilig, M.; Glegg, S.; Ip, A.; Jetha, C.; Mulpuri, K.; O’Donnell, M.; Mishaal, R. Investigating Pediatricians’ Practice, Knowledge, and Barriers in Diagnosing Cerebral Palsy. Children 2025, 12, 1274. https://doi.org/10.3390/children12091274
Wong V, Miller SD, Scoten O, Cohen-Eilig M, Glegg S, Ip A, Jetha C, Mulpuri K, O’Donnell M, Mishaal R. Investigating Pediatricians’ Practice, Knowledge, and Barriers in Diagnosing Cerebral Palsy. Children. 2025; 12(9):1274. https://doi.org/10.3390/children12091274
Chicago/Turabian StyleWong, Vivian, Stacey D. Miller, Olivia Scoten, Mor Cohen-Eilig, Stephanie Glegg, Angie Ip, Chetna Jetha, Kishore Mulpuri, Maureen O’Donnell, and Ram Mishaal. 2025. "Investigating Pediatricians’ Practice, Knowledge, and Barriers in Diagnosing Cerebral Palsy" Children 12, no. 9: 1274. https://doi.org/10.3390/children12091274
APA StyleWong, V., Miller, S. D., Scoten, O., Cohen-Eilig, M., Glegg, S., Ip, A., Jetha, C., Mulpuri, K., O’Donnell, M., & Mishaal, R. (2025). Investigating Pediatricians’ Practice, Knowledge, and Barriers in Diagnosing Cerebral Palsy. Children, 12(9), 1274. https://doi.org/10.3390/children12091274