Letter to the Editor Re: Sensory Integration Therapies for Children with Developmental and Behavioral Disorders
I am responding to your article of May 28, 2012 on behalf of the SPD Foundation and our constituents, primarily parents of children with Sensory Processing Disorder and physicians, therapists, educators and other professionals who are trying to help children with sensory challenges and their families. Our website, www.SPDFoundation.net, receives an average of 85,000 hits each day from individuals seeking information about this disorder, which shows how much information about the disorder is sought and needed.
First, let me applaud the Journal for conveying issues related to this controversial area with such even-handed scientific rigor. Many aspects of this article are accurate and we agree with much of what is conveyed wholeheartedly. For example, the conclusion that occupational therapy may be acceptable as a component of a comprehensive treatment plan is accurate. Another excellent statement provided in the article is that pediatricians should inform potential users of research related to any type of intervention they intend to use.
However, since 1995, the Wallace Research Foundation (WRF) has had an initiative to study Sensory Processing Disorder. To ensure rigor in the design of funded projects, many Principal Investigators with extensive NIH -funded research backgrounds are funded by the WRF projects. The researchers have formed a consortium, the SPD Scientific Work Group, with 49 members so far, representing renowned institutions such as Harvard, Yale, Duke, MIT, U of WI-Madison, UC San Francisco and many others. Notably, none of the dozens of peer-reviewed articles published by the Scientific Work Group are sited in the AAP Section article in Pediatrics. For example, the AAP committee neglected to mention the rigorous preliminary randomized controlled trial (RCT) (Miller et al., 2007), or publications related to: the prevalence of the disorder (Ben-Sasson, 2009, et al.), the validity of the diagnosis (Davies, et al., 2007), and/or the underlying neurological foundations suggested by the empirical data (McIntosh, et al., 1999; Schoen, Miller et al., 2009; Brett-Green, Miller et al., 2008, 2010). The 2007 RCT demonstrated the effectiveness of OT with children who have SPD, in achieving individualized parent priorities as well as other key outcomes compared to both a passive and an active placebo.
The following comments address the AAP Committee's three primary recommendations:
First, is SPD a diagnosis? According to the rule-based definition that a diagnosis is considered valid because it is in the DSM or the ICD, then it is true that SPD is not yet a "real" diagnosis. However, the research evidence includes multiple studies suggesting that SPD, while frequently comorbid with other disorders such as Autism Spectrum Disorder and ADHD, does exist as a separate stand-alone condition. Carter, Briggs- Gowan, and Ben-Sasson (Yale University, U MA-Boston, U Conn) studied all babies born from July 1995 to September 1997 in the New Haven greater metropolitan area. These children were followed from birth to age 8 years and tested several times during the longitudinal, epidemiologic, NIH- funded study. At age 8, with children diagnosed with ASD, genetic disorders, or developmental delays excluded from the research, 75% of the children with SPD symptomology were found to have no co-morbid diagnosis (Carter et al., 2011). In another rigorous NIH-funded epidemiologic study, Goldsmith and colleagues (Van Hulle, et al., 2012) at the University of WI -Madison followed 970 children. They administered the Diagnostic Interview Schedule for Children and excluded children with autism and pervasive developmental disorders from a study which reported that ~ 58% of the children with significant SPD symptoms had no other diagnoses. Thus evidence is building, regardless of the acceptance of SPD in diagnostic manuals, that SPD is a valid diagnosis, and exists in children who do not have other mental health or physical conditions. Regardless, we agree with the AAP committee's conclusion that caution is warranted in labeling the disorder; treating the symptoms (whatever the condition is labeled) is much more important than the diagnostic category into which the label falls.
The second conclusion is that the "limited data on the use of sensory -based therapies should be communicated." Certainly the limitations on effectiveness data related to the many interventions used in pediatrics should be communicated. An informed clinician should have up-to-date references on many if not all therapies used to increase functioning in pediatric clients. In the case of occupational therapy for children with SPD, references should include: Miller et al, (2007), the RCT noted above, that demonstrated the effectiveness of OT in treating 1) parent priorities for treatment outcomes measured with Goal Attainment Scaling (Kiresuk et al., 1994) and cognitive/social issues measured with the Leiter International Performance Scale - Revised (Roid & Miller, 1997) and 2) the RCT administered by Pfeiffer, Kinnealey et al. (2011) that demonstrated the superiority of sensory-based OT to compared to fine motor -based OT and found that the former achieved individualized outcomes e.g., social emotional growth ,and self-regulation whereas the latter resulted in changes related only to fine motor skills. Other articles about the effectiveness of OT with pediatric disorders include: Case-Smith & Arbesman (2008) and May-Benson & Koomar (2010) and more.
We agree also with the third recommendation: families should be taught to determine whether interventions are effective. This key concept applies to all interventions and all service providers. In addition to evaluating interventions such as OT, parents should be taught to evaluate the effect of medications, nutritional supplements, dietary changes, and other interventions. At the STAR Center in Denver, CO, we assist parents in using either visual analog scales or Goal Attainment scaling to evaluate the services they receive. (See Kiresuk et al., 1994 and/or Dexter et al., 1999; van Laerhoven, H. et al., 2004; Paul-Dauphin, et al., 1999 for more information on these techniques.)
Finally, a few comments related to the body of the Pediatrics article follow. The article alludes to, but is non-specific about, the explosion of animal and human research that explores how sensory information is processed and integrated. Sensory integration in this context refers not to the behavioral pattern that OTs and others refer to as "SI" dysfunction. Instead it applies to sensory information that comes into the nervous system as unisensory (e.g., tactile only or auditory only) and synapses on a multisensory neuron or set of neurons, producing a different response than the domain specific (e.g. unisensory) input. An excellent current reference on MSI in animals and humans is the New Handbook of Multisensory Processing (Stein, B. Ed., released in June 2012, with 43 chapters related to MSI including MSI in SPD [Miller et al, 2012]).
In addition to MSI research, studies exist demonstrating differences between SPD and normal controls on other psychophysiologic functions including: arousal using electrodermal activity (McIntosh et al, 1999), vagal tone (Schaaf, 2003), and sensory gating (Davies, 2007). In addition, evidence related to the neurophysiologic mechanisms of sensory processing includes PET scans and environmental trauma studies with non-human primates that demonstrate sensory processing impairments (Schneider et al., 2007 and 2008), rat studies of PPI in animals with poor vs. good sensory gating (Levin et al., 2005 and 2007), and cat studies of MSI (e.g., Stanford, Quessy, Stein; 2005; Perrault, Rowland, Stein, 2012).
A final note regarding the treatment, occupational therapy with a sensory integration framework, is worth mentioning. The AAP committee is quite right in noting that most OTs who use sensory-based therapies do not base their intervention strictly on Ayres' protocols principles (cf. Ayres, 1972). Since the focus of current-day treatment increasingly is social participation, self-regulation, self-esteem/confidence and participation in everyday activities or occupations (Cohn, Miller et al., 2000), the therapeutic model that most advanced clinicians use and teach is enriched from Ayres original teachings. Though in some locations, treatment for SPD is limited to specific protocols, such as so-called "brushing," "spinning," wearing weighted vests, etc., and not tailored to the individual nor based on clinical reasoning, in many locations therapy is provided by advanced clinicians, who have been trained and participated in a mentored training on intervention for SPD.
Thus, best practice OT intervention includes principles from the model originally developed by Ayres (1972) but with striking expansions such as:
1) offering 'intensives' (therapy 3 to 5 days a week) over a short- term, 2) developing specific family-generated functional goals; 3) concentrating on parent education and coaching; and 4) focusing on enriched relationships and engagement, arousal regulation and social participation with the essence being 'joie du vivre,' improving the quality life for children and families.
Certainly, we agree with the AAP authors that "numerous challenges exist for evaluating the effectiveness of SI therapy, including the wide spectrum of symptom severity and presentation, lack of consistent outcome measures, and family factors." (Pediatrics p. 1187). In fact, we have offered additional issues for researchers to consider (Miller et al., 2007b) prior to initiating outcome studies such as:
1) The need for a manualized treatment protocol tied specifically to a fidelity to treatment measure; 2) The need and means to identify a homogeneous sample; 3) The need for consistent outcome measures that are sensitive and measure meaningful changes; 4) And, of course, methodological rigor which is sometimes hard to attain in real world, non-laboratory settings.
The cautions stated in the AAP article about the validity of outcome data relates to all pediatric interventions. We agree with the AAP committee that interventions must be examined in relation to the effectiveness of the treatment for the particular type of disorder a specific individual is exhibiting.
And finally, let us all keep in mind the teachings of Ayres, who consolidated sensory-based therapies into a field she called Sensory Integration; this quote aptly displays Ayres' scientific mind and evaluative spirit.
"Truth, like infinity, is to be forever approached, but never reached" (Ayres, 1972, p iv).
Those using Ayres' assessment and treatment approach should be mindful of her wisdom and humility.
Lucy Jane Miller, May 31, 2012 Executive Director, STAR (Sensory Therapies And Treatment) Center and Sensory Processing Disorder Foundation
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