Table 3 Consensus-based recommendations with corresponding agreement and studies considered
Recommendation | Delphi Agreement (%) | Levels of evidence of the studies considered (n) | Review article (reference number) | Indirect evidence (reference number) |
|---|---|---|---|---|
Early intervention and motor development | ||||
Recommendation 1. For children with AMC, starting at birth and during the first year of life, we suggest regular stretching and positioning in conjunction with caregiver education, a home exercise program and orthotics to maximize the window of opportunity to increase passive and active joint range of motion and decrease joint contractures | 98.6 | [44] | ||
Recommendation 2. For children with AMC, in the first 3 years of life, we suggest using developmental stimulation, positioning, and trunk and limb strengthening to optimize motor skills development and tailor strategies to the child’s capacities with assistive devices and/or compensatory strategies as indicated | 98.8 | [44] | ||
Interventions targeting muscle and joint function | ||||
Recommendation 3. For children with AMC, after the age of 1Â year, we suggest to continue regular stretching, strengthening, positioning, in conjunction with caregiver education, a home exercise program and orthotics throughout growth, to maintain gains and maximize function, joint ROM and alignment, body symmetry, muscle strength, and development | 98.8 | Level III: 1 [45] | [43] | |
Recommendation 4. For children with AMC, we suggest strengthening available muscle groups to increase active range of motion, strength, mobility, stability, and improve overall health | 93.1* | Level III: 1 [45]                                               Level IV: 4 [46–49] | [43] | |
Orthotics | ||||
Recommendation 5. For children with AMC, we suggest using orthotics for the upper and/or lower limbs starting in the first year of life and during the life span to improve joint positioning, improve and maintain range of motion, provide joint alignment and stability for standing, walking, and other functional tasks, and maintain correction post-surgery or post- serial casting | 95.8* | Level III: 1 [56] Level IV: 17 [27, 29,30,31,32, 49, 57,58,59,60,61,62,63,64,65,66,67] | ||
Recommendation 6. For children with AMC, exoskeletons for the upper limb may be used to increase function, but there is insufficient evidence to support or reject their use for upper limbs at the current time | 89.2* | Level III: 1 [56]                                               Level IV: 17 [27, 29–32, 49, 57–67] | ||
Mobility training and assistive equipment | ||||
Recommendation 7. For children with AMC, we suggest early mobility training, including use of mobility aids and orthotics as needed, to maximize mobility (e.g., floor mobility, standing, transferring, walking, assisted walking or wheeled mobility) within their environment based on the child’s age and functional needs | 99.1 | – | ||
Participation in areas of life (self-care, school, work, leisure, domestic and social) | ||||
Recommendation 8. For children with AMC, we suggest maximizing autonomy in self-care activities (feeding, dressing, grooming, toileting, bathing) and other meaningful activities in diverse environments (home, school, work, community) by using a team approach and goal oriented activity-based training tailored to the child’s age and needs, including practice of different strategies, trial of assistive equipment and learning from peers | 97.4* | [43] | ||
Recommendation 9. For children with AMC, we suggest maximizing participation in meaningful activities (school, domestic, leisure and social activities, and work) in diverse environments (home, school, work, community) by supporting accessibility and integration through environmental modifications and advocacy | 99.0 | [43] | ||
Recommendation 10. For children with AMC, we suggest providing opportunities for participation in meaningful activities (school, domestic, leisure and social activities, and work) in diverse environments (home, school, work, community) by guiding families in accessing appropriate external resources | 98.8 | [43] | ||
Pain management | ||||
Recommendation 11. For children with AMC, we suggest evaluating the presence (location, intensity) and type of pain, and its impact on function, in order to tailor the pain management plan | 98.8 | Level IV: 1 [27] | – | [77] |
Recommendation 12. For children with AMC we suggest providing treatment approaches (e.g. soft tissue management, thermal modalities, positioning, energy conservation), orthoses or mobility aids (e.g., walking aids, wheelchair), and/or a home exercise program, based on the child’s needs and tolerance, in order to reduce and/or manage pain | 94.8 | Level IV: 1 [27] | - | [77] |
Recommendation 13. For children with AMC, we suggest offering structured education on the concept of pain and pain management, encouraging self-management strategies, participation in support groups, and facilitating peer-to-peer support, in order to recognize, manage and/or reduce pain | 94.8* | Level IV: 1 [27] | - | [77] |
Psychosocial wellbeing | ||||
Recommendation 14. For children with AMC, to improve psychosocial wellbeing, we suggest using coping strategies, peer-to-peer support and guidance on available resources, based on individual characteristics and contextual circumstances | 92.9* | – | ||
Perioperative rehabilitation | ||||
Recommendation 15. Pre-operative rehabilitation. For children with AMC undergoing upper or lower limb surgery, we suggest pre-operative rehabilitation, including education, equipment provision, home environment modification, combined with other interventions as needed (in person rehabilitation treatment, home exercise program, psychosocial support), to prepare the family and child for surgery and optimize the child’s joint ROM and strength | 96.2* | Level III: 1 [45] | – | |
Recommendation 16. Post-operative rehabilitation. For children with AMC undergoing upper or lower extremity surgery, we suggest implementing rehabilitation interventions targeting muscle and joint function (ROM, stretching, orthotics, and strengthening), and activities (activity training, standing, transferring, walking, recreational activities) and offering psychosocial support when needed, to maximize functional outcomes | 99.1 | Level IV: 20 [46,47,48, 82, 83, 98,99,100,101,102,103,104,105,106,107,108,109,110,111,112] | – | [113] |