NIH Social Relationships Questionnaire

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Nevena Kraljevic

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Oct 4, 2021, 8:10:40 AM10/4/21
to hcp-...@humanconnectome.org
Dear all,

Thank you very much for sharing such a vast amount of data through the HCP data base.

I am using the NIH Social Relationships Questionnaire (in particular the given scores at the columns: 'Friendship_Unadj', 'Loneliness_Unadj', 'PercHostil_Unadj’, 'PercReject_Unadj', 'EmotSupp_Unadj', 'InstruSupp_Unadj’). After reading several sources provided by the NIH I am still insecure what score is provided by the HCP. From the range it could be the uncorrected t-score (see here e.g. page 8: https://nihtoolbox.my.salesforce.com/sfc/p/#2E000001H4ee/a/2E000000Ub7C/9UzNbxkwc9khhqKaYkXmAYUVZaniThvUkA16Ddkp6eY). But when looking at the participants scores there are values listed, that do not fit into this scheme (eg. highest score for one subject in 'EmotSupp_Unadj' is 62.5, but according to this table, the highest possible score is 62.4). I am asking, because I want to create a summary score of Social Relationships as proposed in the respective validation paper by Babakhanyan et al. 2018 (see "Summary scores and base rates” and Table S2: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5859895/#SD2-prom-9-115)
Therefore I would like to know what the scores under the category of the NIH toolbox Social Relationships are, and how to deal with them.

Thank you and best regards,
Nevena Kraljevic


****************************************
Nevena Kraljević
Doctoral Researcher / PhD Student
(she/her)

Institute of Systems Neuroscience
Heinrich-Heine-University Düsseldorf
40225 Düsseldorf, Germany
Mail:  Nevena.K...@hhu.de
https://www.uniklinik-duesseldorf.de/en/institute-of-systems-neuroscience

and 

Institute of Neuroscience and Medicine (INM-7: Brain and Behaviour)  
Research Centre Jülich


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Forschungszentrum Juelich GmbH
52425 Juelich
Sitz der Gesellschaft: Juelich
Eingetragen im Handelsregister des Amtsgerichts Dueren Nr. HR B 3498
Vorsitzender des Aufsichtsrats: MinDir Volker Rieke
Geschaeftsfuehrung: Prof. Dr.-Ing. Wolfgang Marquardt (Vorsitzender),
Karsten Beneke (stellv. Vorsitzender), Prof. Dr.-Ing. Harald Bolt, Prof. Dr. Frauke Melchior
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Elam, Jennifer

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Oct 4, 2021, 4:50:44 PM10/4/21
to hcp-...@humanconnectome.org
Hi Nevena,
HCP-Young Adult Toolbox data was collected according to the (very early) state of NIH Toolbox back in 2012, before the iPad version, when HCP data collection began (see attached Interpretation Guide). The versions of the Emotion domain measures were v1.0 are all reported in HCP as Unadjusted Scale Scores:
  • Unadjusted Scale Score: This score compares the score of the test-taker to those in the entire NIH Toolbox nationally representative normative sample, regardless of age or any other variable. The Unadjusted Scale Score provides a glimpse of the given participant’s overall performance when compared with the general U.S. population. This score may be most useful when trying to gauge one’s overall level of functioning, not in the context of age, gender, or other demographic factors. It may also be of interest when monitoring performance over time. This type of score is the one usually provided for PROMIS measures (referred to in that context as a T-Score).
The guide attached doesn't have a maximum Unadjusted Scale score/T-score listed for the Social Relationships measures, e.g. Emotional Support. It just says that 50 is the mean and SD = 10 for all PRO (Patient-reported-outcome) measures like the Emotion/Social batteries and Appendix B4 shows sample output data.

We do make the Toolbox raw outputs from HCP available to those who have HCP Restricted data access (application here) and request it, if that would also be helpful for what you're doing.

Best,
Jenn
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NIH Toolbox Scoring and Interpretation Manual 9-27-12.pdf

Nevena Kraljevic

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Oct 19, 2021, 1:13:56 PM10/19/21
to hcp-...@humanconnectome.org
Dear all,

Thank you very much for sharing such a vast amount of data through the HCP data base.

I am using the NIH Social Relationships Questionnaire (in particular the given scores at the columns: 'Friendship_Unadj', 'Loneliness_Unadj', 'PercHostil_Unadj’, 'PercReject_Unadj', 'EmotSupp_Unadj', 'InstruSupp_Unadj’).  After reading sources provided by the NIH I assume the score provided by the HCP could be the uncorrected t-score (see here e.g. page 8: https://nihtoolbox.my.salesforce.com/sfc/p/#2E000001H4ee/a/2E000000Ub7C/9UzNbxkwc9khhqKaYkXmAYUVZaniThvUkA16Ddkp6eY).
Is there any chance to receive the raw values (before normalisation) so that I can create a compound score (as proposed in the respective validation paper by Babakhanyan et al. 2018; see "Summary scores and base rates” and Table S2: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5859895/#SD2-prom-9-115).
Maybe it is of interest, that I have the "Restricted Access Terms” accepted.

Elam, Jennifer

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Oct 21, 2021, 11:00:33 AM10/21/21
to hcp-...@humanconnectome.org
Hi Nevena,
The documentation you are seeing at the nihtoolbox site is for a newer version of Toolbox than we used for HCP (protocol frozen in 2012, documention attached). All our scores in the HCP data are Unadjusted Scale scores, which for all parts of Toolbox that came from Patient-repoted-outcome measures, like the Social Battery, is essentially a T-score that puts the raw score on a 0-100 scale, with 50 being the mean, and a Standard Deviation of 10. 

I can send you the raw item-level data for Toolbox off list after we have verified your Restricted access status.

Best,
Jenn


From: Nevena Kraljevic
Sent: Tuesday, October 19, 2021 3:33 AM

To: hcp-...@humanconnectome.org
Subject: [hcp-users] NIH Social Relationships Questionnaire

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NIH Toolbox Scoring and Interpretation Manual 9-27-12.pdf

Hodge, Michael

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Oct 21, 2021, 11:02:58 AM10/21/21
to hcp-...@humanconnectome.org

Jenn,

Nevena has restriced access.


--Mike

From: Elam, Jennifer <el...@wustl.edu>
Sent: Thursday, October 21, 2021 10:00 AM
To: hcp-...@humanconnectome.org <hcp-...@humanconnectome.org>
Subject: Re: [hcp-users] NIH Social Relationships Questionnaire
 

* External Email - Caution *

Nevena Kraljevic

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Mar 16, 2022, 7:34:08 AM3/16/22
to Elam, Jennifer, hcp-...@humanconnectome.org
Dear Jenn,

I hope you are doing fine.
I did some checks and I found that (at least?) 2 Subjects are not listed in the S1200_HCP_Toolbox_Raw_Full_wRETEST.xlsx, but they do have values in the HCP_s1200_unrestricted_XXX.csv files. Do you know why there are no detailed values in the S1200_HCP_Toolbox_Raw_Full_wRETEST.xlsx file? And is there a way to get their detailed information?
If needed, I can tell you the Subject IDs of the two participants in question.

Thank you and best regards,
Nevena

On 21. Oct 2021, at 17:15, Elam, Jennifer <el...@wustl.edu> wrote:

Hi Nevena,
The NIH Toolbox raw data for HCP-YA is attached. For the 46 subjects who were in the Retest cohort, they have two sets of data for each instrument. The Retest data is just the second listed data series of each Toolbox measure for each of the retest subjects (i.e. there is no special notation in the spreadsheet that this was the second run of Toolbox for these subjects). The 46 Retest subjects are listed in the first column of the attached Retest_behavioral...csv for your reference.
From: Elam, Jennifer <el...@wustl.edu>

Sent: Thursday, October 21, 2021 10:00 AM
To: hcp-...@humanconnectome.org <hcp-...@humanconnectome.org>
Subject: Re: [hcp-users] NIH Social Relationships Questionnaire
 
<S1200_HCP_Toolbox_Raw_Full_wRETEST.xlsx><Retest_behavioral_Openaccess.csv>

Elam, Jennifer

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Mar 16, 2022, 11:18:08 AM3/16/22
to Nevena Kraljevic, hcp-...@humanconnectome.org
Hi Nevena,
I don't know the reason there are 2 subjects missing in the Toolbox raw data for HCP-YA. I have confirmed they are missing in the versions I have of the raw data, including unreleased subjects, but they do have released summary data from Toolbox, data from other instruments, and imaging data.

The process of getting the data from Toobox, converting the TB Subject PINs, and reformatting the data for release is not straightforward and was done by someone no longer on the project. I will work on this a bit more with a colleague who has been working with TB data on the Lifespan projects, but I'm not certain that, a) we are going to be able to  find the PIN to Subject ID conversion needed to find these subjects, or b) that this data actually exists from our download from NIH TB. 
From: Nevena Kraljevic <Nevena.K...@uni-duesseldorf.de>
Sent: Wednesday, March 16, 2022 6:32 AM
To: Elam, Jennifer <el...@wustl.edu>; hcp-...@humanconnectome.org <hcp-...@humanconnectome.org>

Subject: Re: [hcp-users] NIH Social Relationships Questionnaire
 

* External Email - Caution *
Dear Jenn,

Elam, Jennifer

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Mar 16, 2022, 1:05:40 PM3/16/22
to Nevena Kraljevic, hcp-...@humanconnectome.org
Hi Nevena,
We've dug into the data directly from the NIH Toolbox assessment center and still can't find raw data for those two subjects, 304727 & 728454. 

It's possible that we had to re-score something due to an RA pressing a wrong button during data collection and the incorrect raw data was not released because it would cause errors in scores that anyone wanted to recalculate later. Another possibility is that demographic registration (like education or age) was incorrect, which would affect scoring, so the raw data was not released for that reason. 

Sorry we can't recover that data.
From: Elam, Jennifer <el...@wustl.edu>
Sent: Wednesday, March 16, 2022 10:17 AM
To: Nevena Kraljevic <Nevena.K...@uni-duesseldorf.de>; hcp-...@humanconnectome.org <hcp-...@humanconnectome.org>
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