The NACD Foundation

Biomedical
research & Development

Examination of Research/Efficacy of Treatment

There is a need to examine the research being done in the field of developmental disabilities and educate the parents on the safest and most effective treatment options.

Efficacy of TreatmentThe field of complementary and alternative medicine (CAM) has become widely sought after by parents to address their children's developmental issues.

"In an analysis of interviews conducted with 30 parents of children with DS [Down Syndrome], Prussing et al. [2005] found that CAM use reflected an effort to fulfill priorities not met in contemporary biomedical care which views DS as a condition with a fixed, universal, and essentially pathological course…Of 30 families of children with DS, 21 (70.0%) had tried more than two therapies; 5 (16.7%) had tried one therapy, and 4 (13.3%) had tried none [Prussing et al., 2004]."5 A 2003 survey of parents of children with attention-deficit hyperactivity disorder (ADHD), found that 54% of parents reported using some form of complementary or alternative medicine as part of their child's treatment.6 A survey done three years later, this time of parents of children with autism, found that 95% of parents responding to the survey use CAM.7

With so many families using CAM treatments, we must consider the following concerns associated with CAM use:

  1. The safety and effectiveness of most CAM therapies are not substantiated. Parents must be made aware of the “…efficacy (or lack thereof) and potential side effects [of CAM treatments]…Most treatments…have not been adequately studied and do not have evidence to support their use.”8
  2. Most families are not disclosing use of CAM to their healthcare provider. The 2003 Survey, cited above, discovered that only 11% of parents discussed using CAM with their child’s physician. In the Down Syndrome study (above), of the families who had used CAM therapies, 67% had communicated none or only some of this use to their pediatricians [Prussing et al., 2004]. This suggests that parents have taken the medical management of these children into their own hands. Do the parents have adequate information available to them to make responsible, educated decisions?
  3. Most parents learn of CAM treatments through other parents, advertisements and the internet. These sources can often be biased and even commercially driven. Are parents, yearning to help their child, being easily persuaded by publicity and anecdotal testimonies to try therapies that may even be harmful? It is understandable that parents are tempted to try any therapy that may hold promise.

NACD has always operated optimistically, but skeptically, when it comes to new interventions and unfortunately, in working with thousands of developmentally disabled children over the past 30 years, we have witnessed the erroneous and tragic effects of misapplied therapies and treatments on these children.

Through the NACD Foundation we will provide parents with reliable information regarding the research and treatment options available, with the aim of applying only the safest, best researched and most effective therapies on these children.

To help us with this research, please consider making a donation today!

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Disclaimer: None of the information presented here should be considered medical advice. While we believe the information contained in the site to be accurate, we are not in a position to provide independent verification. No medical treatment should be attempted for any child without the advice of a physician who thoroughly understands the developmental issues, physiological function, and developmental and medical history of the child, and who has thorough input from and consultation with the family.

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