Table 2. Linking 2nd level International Classification of Functioning and Disability (ICF) categories with Surveillance Data from the Muscular Dystrophy Tracking, Surveillance and Research (MD STARnet) (n=703)1.
| ICF categories | Surveillance Data Elements | n | % of total sample2 | |
|---|---|---|---|---|
| Chapter 1: Mental functions | ||||
| b117 | Intellectual functions | Any3 linked intellectual function | 356 | 51% |
| Autism | 29 | 4% | ||
| Cognitive delay | 163 | 23% | ||
| Special education | 246 | 35% | ||
| Resource room | 39 | 6% | ||
| b122 | Global psychosocial functions | Any linked global psychosocial function | 283 | 40% |
| Autism | 29 | 4% | ||
| Behavior problems | 198 | 28% | ||
| Depression | 130 | 18% | ||
| b140 | Attention functions | Attention-deficit hyperactivity disorder | 139 | 20% |
| b163 | Basic cognitive functions | nc-hc | ||
| b167 | Mental functions of language | Speech delay | 254 | 36% |
|
| ||||
| Chapter 2: Sensory Functions and Pain | ||||
| b280 | Sensation of pain | Any linked sensation of pain | 344 | 49% |
| Intractable pain | 42 | 6% | ||
| Muscle pain/cramps | 202 | 29% | ||
| Pain medication use | 195 | 28% | ||
|
| ||||
| Chapter 4: Functions of the Cardiovascular, Hematological, Immunological and Respiratory Systems | ||||
| b410 | Heart functions | Any linked heart function | 295 | 42% |
| Arrhythmia/Dysrhythmia | 51 | 7% | ||
| Cardiomyopathy | 212 | 30% | ||
| Diastolic dysfunction | 69 | 10% | ||
| Tachycardia | 108 | 15% | ||
| b420 | Blood pressure functions | Any linked blood pressure function | 56 | 8% |
| High blood pressure | 39 | 6% | ||
| Low blood pressure | 23 | 3% | ||
| Blood pressure medication | 39 | 6% | ||
| b440 | Respiratory functions | nc-hc | ||
| b445 | Respiratory muscle functions | Any linked respiratory muscle function | 275 | 39% |
| Cough-assist machine | 48 | 7% | ||
| Forced vital capacity (<50%) | 213 | 30% | ||
| Noninvasive positive (bilevel/continuous) airway pressure | 175 | 25% | ||
| Invasive ventilation | 53 | 8% | ||
| Oxygen use | 66 | 9% | ||
| b450 | Additional respiratory functions | nc-hc | ||
| b455 | Exercise tolerance functions | nc-hc | ||
|
| ||||
| Chapter 5: Functions of the Digestive, Metabolic, and Endocrine Systems | ||||
| b510 | Ingestion functions | Any linked ingestion function | 18 | 3% |
| Nasogastric tube | 4 | <1% | ||
| Percutaneous endoscopic gastrostomy | 14 | 2% | ||
| b515 | Digestive functions | nc-hc | ||
| b525 | Defecation functions | nc-hc | ||
| b530 | Weight maintenance functions | Any linked weight maintenance function | 333 | 47% |
| Dietary counseling for weight management | 312 | 44% | ||
| Poor weight gain | 44 | 6% | ||
| b540 | General metabolic functions | nc-hc | ||
| b545 | Water, mineral and electrolyte balance functions | nc-hc | ||
| b555 | Endocrine gland functions | nc-hc | ||
|
| ||||
| Chapter 7: Neuromusculoskeletal and Movement Related Functions | ||||
| b710 | Mobility of joint functions | Any linked mobility of joint function | 482 | 66% |
| KAFO/AFO/night splint | 464 | 66% | ||
| Tendon release | 150 | 32% | ||
| b730 | Muscle power functions | Any linked muscle power function | 697 | 99% |
| Gowers’ sign | 633 | 90% | ||
| Inability to keep up with peers | 316 | 45% | ||
| Independent ambulation ceased | 399 | 57% | ||
| Muscle hypotonia | 335 | 48% | ||
| Muscle weakness | 605 | 86% | ||
| Transfer assistance | 334 | 48% | ||
| Trouble climbing stairs | 515 | 73% | ||
| Trouble walking | 570 | 81% | ||
| Wheelchair use | 513 | 73% | ||
| b740 | Muscle endurance functions | nc-hc | ||
| b770 | Gait pattern functions | Any linked gait pattern function | 602 | 86% |
| Abnormal gait | 566 | 81% | ||
| Toe walking | 339 | 48% | ||
|
| ||||
| Chapter 8: Functions of the Skin and Related Structures | ||||
| b810 | Protective functions of the skin | nc-hc | ||
nc-hc = not covered health condition. KAFO = knee-ankle-foot orthosis. AFO = ankle-foot orthosis. Bolded text identifies second-level function categories.
1
The oldest affected male in a family, classified as definite or probable childhood-onset dystrophinopathy, and resident of Arizona, Colorado, Iowa, Georgia or western New York State.
2
The denominator for all linked surveillance data elements is the total sample size (n=703).
3
‘Any’ refers to the presence of at least one of the linked surveillance data elements within a function category.