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. Author manuscript; available in PMC: 2019 Jul 1.
Published in final edited form as: J Child Neurol. 2018 May 15;33(8):537–545. doi: 10.1177/0883073818773029

Table 3.

Signs and symptoms first reported to care providers and first medical evaluation of males with Duchenne muscular dystrophy and no family history of dystrophinopathy at birth, MD STARnet

Preterm births Term births P value*
Signs and symptoms first reported N % N %
 Gait problems1 29 96.67 294 99.66 0.18
 Gross motor delay2 28 93.33 287 97.29 0.23
 Muscle symptoms3 28 93.33 288 97.63 0.20
 Non-motor, neurologic4 21 70.00 198 67.12 0.84
 Other5 16 53.33 130 44.07 0.34
First concern that prompted initial evaluation
 Gait problems1 16 53.33 162 54.92 1.00
 Gross motor delay2 19 63.33 175 59.32 0.70
 Muscle symptoms3 7 23.33 106 35.93 0.23
 Non-motor, neurologic4 7 23.33 80 27.12 0.83
 Other5 14 46.67 80 27.12 0.03
First concern noted by
 Family, primary caregiver 13 43.33 171 59.97 0.18
 Child physician 6 20.00 51 17.29
 Day care personnel 1 3.33 2 0.68
 School 5 16.67 44 14.92
 Other 3 10.00 12 4.06
 Unknown 2 6.67 15 5.08
Health provider that evaluated the child for the first concern
 Pediatrician 13 43.33 110 37.29 0.81
 Family practitioner 2 6.67 29 9.83
 Orthopedist 2 6.67 22 7.46
 Neurologist/Neuromuscular specialist 4 13.33 63 21.36
 Therapist (Speech, Occupational, Physical) 4 13.33 16 5.42
 Other 3 10.00 33 11.19
 Unknown 2 6.67 18 6.10
Type of referral action as a result of the first evaluation
 Laboratory testsa 8 26.67 107 36.27 0.57
 Consultationsb 12 40.00 102 13.08
 Therapiesc 5 16.67 52 25.42
 Otherd 4 13.33 30 25.30
 None 1 3.33 4 1.36
*

Fisher’s exact test; MD STARnet = Muscular Dystrophy Surveillance Tracking and Research Network;

1

includes: Abnormal gait, Frequent falling/clumsy, Toe-walking, Trouble walking or running, Trouble climbing, Trouble rising or getting up

2

includes: Loss of motor skills, Muscle hypotonia, Gross motor delay, Inability to keep up with peers in motor;

3

includes: Muscle pain, Calf hypertrophy, Muscle weakness;

4

includes: Speech delay or articulation difficulties, Behavioral issues, Cognitive delay, Autism, Other neurology diagnosis

5

includes: Failure to thrive/poor weight gain, Abnormal lab test, Other factors

a

includes: Creatine kinase, DNA, Muscle biopsy, and Liver tests

b

includes: Orthopedics, Pediatrician, Neurology/Neuromuscular, Gastroenterology

c

includes: Speech Therapy, Occupational Therapy, Physical Therapy, Rehabilitation medicine

d

includes: Follow up in less than 6 months, Other, Unknown