Developmental Guidelines for Children with Myelodysplasia

Abstract

A new inventory of 166 milestones and developmental tasks was designed and given to parents of 173 children with myelodysplasia to use over a 2 1/2-year period to record their children's development. The inventory included items in the categories of self-help (including independent toileting), personal-social development, and gross motor development. The children were placed in one of four subgroups according to their level of paralysis. For each motor-level group, the percentage of those performing each item at various ages was calculated. The ages of routine performance of selected self-help and personal-social items are reported for 20, 50, and 80 percent achievement for the children for whom the data were known. There was a tendency for the less paralyzed children to learn skills more quickly than their more paralyzed peers. However, the wide age ranges within groups for learning individual skills indicate that factors other than the level of paralysis affect the rate of development, and these factors need to be identified. The data provided represent a reasonable estimate of when children with varying degrees of paralysis can first be expected to perform developmental tasks. The tables can be used to establish learning objectives and programs so that more children with myelodysplasia can learn independence at an earlier age.

Measuring Physical Function in Children with Spina Bifida and Dislocated Hips

“…The Inventory of Development Guidelines for Children with Myelodysplasia (IDGCM), an inventory developed specifically for children with spina bifida, includes 166 tasks in gross motor, self-help, and personal/social domains. 19 However, the intended purpose of this inventory is to measure developmental status rather than functional disability; it is not intended to evaluate therapeutic interventions. Thus, for children with spina bifida and dislocated hips, it is most suitable to use multiple functional outcome measures, which might include the PODCQ and the ASK to assess general disability and the SBHQ to address the distinct concerns of patients with spina bifida and dislocated hips.…”

Acquisition of autonomy skills in adolescents with myelomeningocele

“…This checklist was developed to extend skill development timelines beyond early childhood developmental profiles already in existence. 11 Checklist administration required the use of an instructor's manual, ensuring interrater reliability. Individual skills were queried at each visit and scored as 'unable or refuses' to perform task, 'able, but limited' completion of task due to environmental or time constraints, and 'able on a regular basis' to perform task.…”

Functional Assessment in Young Children with Neurological Impairments

“…The IDGCM (Sousa, Telzrow, Holm, McCartin, & Shurtleff, 1983) is an inventory comprising 166 tasks in the gross motor, self-help, and personal/social domains and has been specifically written for children with myelodysplasia. Both standard motor milestones and functional items are included in the inventory.…”