Re: clinical data comments
Ateac...@aol.com
Thanks,
In a message dated 12/7/2016 6:12:01 P.M. US Mountain Standard Time, jwil...@wpspublish.com writes:
Hi again,
Thanks for your patience on my reply to this email. I have a short break while I wait for the Teen editorial work to happen, so I wanted to get back to you on the issue of clinical data groups.
Let me start with a little background and then move on to reply to each of your numbered comments/questions.
Clinical data collection for us is primarily opportunistic – although we will be “on the lookout” for certain groups, the final samples are determined largely by what we were able to find. What this means in practice is that we tend to get the most common disorders found in clinical settings. For the SPM-2 in particular, this means that we will probably wind up with a sizable “heterogeneous” clinical sample, along with a substantial ASD sample. We rely on our authors to identify potential data collectors with access to any special populations.
Here are my replies to your comments
1. Regarding the different clinical groups for different age ranges:
a. We will use you “add” and “keep” lists as specific check-boxes on the form so that data collectors can identify those cases directly. We will also have an “Other disorder, please specify” option.
b. Can you elaborate on what “low birthweight for gestational age” means?
LBW infants were defined as those weighing <2500 grams at birth, PB infants as those born before 37 weeks of gestation and SGA as those with a birth weight for gestational age more than 2 standard deviations (SD's) below the mean according to the Swedish fetal growth curve.
Is this what you were asking?
2. We also think that non-comorbid SI cases are going to be very difficult to find under the best of circumstances.
a. If we apply very strict criteria to the evaluator we may limit the cases even more. In either case, we may have to live with a very small sample.
Yes,
very difficult …also because insurance coverage usually requires other
diagnoses.
b.
As I mentioned above, we usually rely on authors to provide us
contacts for special groups, but that may not help much in this case as
non-comorbidity really isn’t a population in itself that you could go out and
look for (unless you know folks who specialize in
this).
Yes, there are many clinics across the USA who use SI treatment. However if they take insurance, they will often have a secondary diagnoses. Or sometimes (as in Cheryl’s clinic in California) they don’t use the SI diagnoses at all, because if SI is in the diagnosis the kids won’t be covered.
c. We might just make it a check-box like “This individual has an identifiable sensory processing or sensory-integration [disorder?] with no comorbid conditions.” Perhaps you all can think of the exact language you think would be most useful here.
Language
you are using above is fine. Using sensory processing disorder is fine too.
However you may not find many cases where this will fit.
d.
For
every clinical case, we ask about the origin of the diagnosis, and we rate the
validity of the diagnosis based on the what we know about how it was generated
and what corroborating information we are given, and then we decide how to use
the data. For example, from strongest to weakest:
What
do we do about diagnoses that don’t have a tool, such as FAS that is diagnosed
by an MD?
i. Includes standard scores on relevant measures (SIPT, Connors, ADOS, etc) administered concurrently with the research form.
ii. Includes standard scores on relevant measures (SIPT, Connors, ADOS, etc) administered within a specific period of time.
iii. Is based on relevant measures, without scores, administered within a specific period of time.
iv.
Is based on the expertise or credentials of the assessor (OT, SP,
etc.), without assessment information, diagnosed within a specific period of
time.
Could you please add MD
(doctor) here too?
v. An administrative or historical diagnosis. This type of diagnosis would not be used for a specific clinical group study, but could be used for a heterogeneous clinical group if we were able to understand from the data collector how it was generated, but most likely it would just become a standardization case.
3.
For teens and adults, we would look for clinics or institutions
that serve those age populations. Like 2.d.v above, we would rate a
self-reported diagnosis based on the validity and recency of the data the
participant reported. You may know more about the size and accessibility of
adult sensory disorder populations than we do. I will have to come up with some
standardization sample targets for this group, which I will base mainly on the
Sensory Profile adult studies relative to the other age groups (which I based on
SPM, SPM-P, and SP).
We
assume you will have larger sample groups than what they used in the
Sensory Profile.
We were proud to have them larger in the SPM.
Let me know what you think of all that, and whether you have any further suggestions or comments for us.
John
John Williams
Thanks, all for your comments. Here are some additional thoughts and replies:
1. Low birthweight for gestational age: Thanks for the clarification. I was wondering which category you were thinking of. We can ask about all three: LBW (<2500g), SGA (>2SD below mean), and PB (<37 weeks).
2. Non-comorbid sensory group: Based on what you’ve described, this group may not materialize. If it were just a matter of infrequency we might catch a small group with effort and luck, but if their presence is obscured by a reimbursable diagnosis (essentially defining non-comorbidity out of existence) we won’t be able to identify them.
3. Adult sample size and age range: The SP had about 750 cases for the adult sample (ages 18-97), so why don’t we try for 900-1000 cases. We’ll have to define the age ranges for the Teen and Adult forms. We could keep the Teen form at 12-21, to account for students who were still in high school after age 18. Likewise, we might start the Adult form lower than 18, to account for minors living as adults (i.e., emancipated, not in school, etc) . We would just have to clearly state the criteria for choosing one form over the other, similar to what we do for 5-year-olds based on whether they are in kindergarten or not.
4. Standardization setting for I-T: I’m glad you mentioned this (in another email). Yes, SPM-P was standardized in homes (the Home form) and daycares (the School form) because the forms are setting-specific. The I-T Caregiver form, however, is not setting specific, so we can do both with the same form. As I recall, your goal for the clinical use of the I-T forms together is to generate sensory scores for the infant and the caregiver so that both could be considered during intervention, so we do need to capture a broader population of caregivers.
John
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