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Table 4 PhenX protocol changes implemented by sites

From: PhenX RISING: real world implementation and sharing of PhenX measures

PhenX ID

Description of protocol change

Group

120600

Had to add ‘0’ option for how many times the person throws up because there was no skip logic

Duke

030300

Did not modify “Protocol Text” field but modified other fields (frequency, used “everday” instead of “every 30 days”)

CLHLS

010100

Did modify “Protocol Text” field for specific applications (added “animal year” for birth year)

CLHLS

011000

Did modify “Protocol Text” field for specific applications (added “the year of attending school” instead of the degree of education)

CLHLS

011300

Did modify “Protocol Text” field for specific applications (most of respondents are retired at present)

CLHLS

010500

Did modify “Protocol Text” field for specific applications (respondents are Chinese, not Americans)

CLHLS

101100

Did not modify any fields but used a subset of the protocols

CLHLS

030800

Did not modify “Protocol Text” field but modified other fields (frequency, used “everday” instead of “every 30 days”)

CLHLS

150703

Did modify “Protocol Text” field for specific applications (added “playing mah-jong”)

CLHLS

011100

Unfortunately, we had to drop the PhenX family income measure. If the participant does not outright answer their best estimate for total family income, a series of higher or lower questions are asked which relies on poverty threshold information determined by the US Census Bureau. However, the poverty threshold levels contradict the pre-determined series of higher or lower questions such that a family could be making more than $30 K a year but still be under the poverty threshold depending on the number of members living in the household. Thus, we felt this question was subject to error and we decided to revert to the family income question asked in previous waves of our survey. (See attached word document)

Detroit Neighborhood Health Study

031100

For the Substance use questions, we decided in conjunction with our survey company to alter these questions for administration simplicity, while ultimately still obtaining the answers for the PhenX questions. First, we ask about ANY use of the 10 categories of substances for both lifetime and 30 day frequency. Then, we ask about ILLICIT use for lifetime and 30 day frequency.

Detroit Neighborhood Health Study

030800

For the Substance use questions, we decided in conjunction with our survey company to alter these questions for administration simplicity, while ultimately still obtaining the answers for the PhenX questions. First, we ask about ANY use of the 10 categories of substances for both lifetime and 30 day frequency. Then, we ask about ILLICIT use for lifetime and 30 day frequency.

Detroit Neighborhood Health Study

010100

Changed “refused” response option to “decline to state”

PING

010700

Changed “refused” response option to “decline to state”

PING

010900

Changed “refused” response option to “decline to state”

PING

180400

Did not modify any protocol text, but modified the age range such that the child version will be given to all participants (up to age 21)

PING

211000

Added instructions and a question at the beginning asking for an education level so that the questionnaire could be administered to only the participants who are still in school. Also changed wording of items 7 (“help us children with our…” to “help students with their…”), 9 (“teacher” to “teachers”), and 37 (“when we play” to “when we do activities”) in order to make it apply to entire age range.

PING

120500

Administering the child protocol to all participants ( up to age 21). Also modified wording of items 4 (“other kids” to “others”) and 15 (“kids” to “people”) in order to make it applicable to entire age range.

PING

120200

Administering child version to all participants (up to age 21). Changed the wording of items 6 (“I want that things are in a fixed order” to “I want things to be in a fixed order”), 52 (“I worry that bad happens to my parents” to “I worry that bad things happen to my parents”), and 64 (“I have unbidden thoughts about a very aversive event I once experienced” to “I have unwanted thoughts about a very unpleasant event I once experienced”) in order to make them more easily understood by young children.

PING

All Alcohol, Tobacco, & Substance Questionnaires

Administered all questions, but added questions and modified order when necessary to allow for the skip logic to work properly in Assessment Center. Will be emailing reference cards as separate files in email to participants.

PING

180500

Did not modify any protocol text, but modified the age range such that the child version will be given to all participants (up to age 21)

PING

030300

Removed don’t know/refused option and from [DATEFILL] not used, cards not used

PMRP

030200

No changes, definition/cards not given

PMRP

030100

No changes, definition/cards not given

PMRP

030500

No don’t know/refused option, did not include question 3 as had just answered largest number of drinks in a single day, did not use skip for 3 or fewer drinks or questions 1 and 2 never, just continued with tolerant questions, included card E2 for them to determine 50% increase or not, put YES as first option to keep consistent throughout, removed tally sheet references, did not include question 5.2a as no don’t know option given, question 10 put Did drinking ever cause you to have into table same with question 12 lead in, 13.12 which ones removed from table and just asked them to specify which ones

PMRP

030400

Didn’t give definition or flashcards for size of a drink

PMRP

010200

Added a Don’t Know option

PMRP

010300

No changes

PMRP

010400

No changes

PMRP

060100

Added Your to Type & Age of Home, did not use 5. when did you move from there?, current pets removed refused/don’t know option,

PMRP

010800

Changed from verify address to list your complete address

PMRP

010100

Removed don’t know/refused option and about how old are you

PMRP

011000

Removed refused option

PMRP

010900

Removed don’t know/refused options

PMRP

011300

Changed what in the question to other to match the selections

PMRP

060700

To question 1 added in your current household, removed the refused/don’t know options. For who smokes created a table to complete

PMRP

120500

Removed from the Composite International Diagnostic Interview from the section header, removed refused/not asked options, if question 4 was yes, asked 4a didn’t skip to 5 as direction indicated, if no skip to 5, Part II removed scoring

PMRP

010500

Removed refused don’t know from first question and refused from second question

PMRP

040100

Added 2 more lines for sister, brother, daughter, son

PMRP

010700

Removed refused/don’t know options

PMRP

020600

Added Which hand do you use to: to the table, added only to the right hand and left hand column header

PMRP

011500

Removed refused option, added our Badger Care

PMRP

020704

Removed refused/don’t know options, listed as ____FEET ____INCHES

PMRP

130300

Started A. at SUDDEN LOSS OR CHANGE OF SPEECH, removed don’t know from question 3, 5e had question read If more than one problem with you speech, which of these most closely describes the problem with your speech?, in 6 removed INCLUDE ALL THAT APPLY and READ ALL directions, I THINK INCORRECTLY CHANGED SKIP IN 9 SHOULD HAVE ASKED 9A FOR BOTH EYES AND ASKED FOR RIGHT AND LEFT INSTEAD, in 10 removed INCLUDE ALL THAT APPLY, 11 11a 14 15 removed don’t know,

PMRP

011400

Made into a table and added space for one more person

PMRP

120400

No changes

PMRP

010600

Removed refused option

PMRP

060800

Changed I to we, bolded ask about your full brothers and sisters, removed NA option in question 2, to 3 added List oldest to youngest, putting yourself in the birth order, changed name to initials, removed NA option, last column reads How old are they now/were they when he/she died

PMRP

030900

Removed don’t know/refused option

PMRP

030600

Removed don’t know refused options, removed skip after question 2, if question 1 no went to smoke exposure section,

PMRP

031000

But b. at the end of the 6 questions with direction to return to answer for max use if appropriate,

PMRP

030800

Changed directions to read The following are three sections. Section A is for Every-Day Smokers. Section B is people who are Some-Day Smokers. Section is for Former Smokers. Removed don’t know/refused options.

PMRP

030700

Removed skip directions and asked both question of all smokers, removed don’t know/refused options

PMRP

150900

Removed scoring table

PMRP

061300

Added don’t know option to direct to question if don’t know exact age question, and reworded the ps in the table to read on a typical weekday in the summer, on a typical weekend day in the summer, For how many months a year did you usually have a tan, row ps read when you were in your (teens or twenties or thirties or the past ten years) about how many hours did you generally spend in the mid-day sun.

PMRP

021502

Requested in lbs.

PMRP