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Protocol - Family History of Speech and Language Impairment

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Description:

The Family History Questionnaire is a 9-item proxy-administered questionnaire completed by a parent for their young child. It asks about the child's personal and family history of speech and language impairment.

Specific Instructions:

Rosa's Law, enacted in October 2010, changes references in federal laws and acts from "mental retardation" to "intellectual disability," and references to a "mentally retarded individual" to "an individual with an intellectual disability." The PhenX Working Group notes that this protocol was developed and tested using previously accepted terminology. Replacing this terminology with the newly enacted standard is at the researcher's discretion.

The Expert Review Panel recommends that items 11 through 21 (hereditary factors) of the Personal and Family History of Hearing Loss protocol are added to this protocol.

Protocol:

Family History Questionnaire

Target child/person items:

1. By age 2, was your child talking in short phrases or sentences?

0[ ]No

1[ ]Yes

99[ ]Don't Know

2. When your child was 2 years old, were you concerned that he/she was having difficulty learning to talk?

0[ ]No

1[ ]Yes

99[ ]Don't Know

3. At this time, do people frequently have trouble understanding your child?

0[ ]No

1[ ]Yes

99[ ]Don't Know

4. Has anyone in your child's family had speech or language therapy?

0[ ]No

1[ ]Yes

99[ ]Don't Know

If Yes, Relationship to child? ___________________________________

What for? ____________________________________

Family items

Family: Parents and biologically related siblings

5. Has anyone in your child's family had difficulty learning to read or had problems with school work? (e.g., repeated a grade)

0[ ]No

1[ ]Yes

99[ ]Don't Know

If Yes, what are the details? _________________________________________

6. Has anyone in your child's family been diagnosed as mentally retarded?

0[ ]No

1[ ]Yes

99[ ]Don't Know

7. Does anyone in your child's family have a hearing difficulty?

0[ ]No

1[ ]Yes

99[ ]Don't Know

8. Has anyone in your child's family been slow in learning to talk?

0[ ]No

1[ ]Yes

99[ ]Don't Know

9. Has anyone in your child's family had any other type of communication disorder such as:

9.1. Stuttering?

0[ ]No

1[ ]Yes

9.2. Is less talkative?

0[ ]No

1[ ]Yes

9.3. Has a hard time carrying on a conversation?

0[ ]No

1[ ]Yes

9.4. Doesn't like to read?

0[ ]No

1[ ]Yes

9.5. Doesn't read well?

0[ ]No

1[ ]Yes

9.6. Has difficulty thinking of words (s)he wants to say when talking?

0[ ]No

1[ ]Yes

9.7. Has a poorer vocabulary than other family members?

0[ ]No

1[ ]Yes

9.8. Is a poor speller?

0[ ]No

1[ ]Yes

9.9. Has awkward sentence structures when writing or talking?

0[ ]No

1[ ]Yes

9.10. Mispronounces long words?

0[ ]No

1[ ]Yes

9.11. Is hard to follow when (s)he tells you something, such as a personal experience?

0[ ]No

1[ ]Yes

9.12. Has difficulty explaining things?

0[ ]No

1[ ]Yes

Protocol Name from Source:

Family History Questionnaire

Availability:

Publicly available

Personnel and Training Required

None

Equipment Needs

The respondent will need a copy of the questionnaire.

Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Proxy-administered questionnaire

Life Stage:

Child, Adolescent, Adult

Participants:

The parents of children and adolescents, ages 3-21 years old

Selection Rationale

The Family History Questionnaire was selected because it is a simple, reliable protocol that can be quickly and easily administered to capture a child's personal and family history of speech and language impairment.

Language

English

Standards
StandardNameIDSource
Common Data Elements (CDE) Family Medical History Speech And Language Impairment Assessment Description Text 3139293 CDE Browser
Logical Observation Identifiers Names and Codes (LOINC) Fam hx speech lang impair proto 62984-0 LOINC
Common Data Elements (CDE) Family Medical History Speech And Language Impairment Assessment Description Text 3139293 CDE Browser
Derived Variables

None

Process and Review

The Expert Review Panel #7 (ERP 7) reviewed the measures in the Speech and Hearing domain.

Guidance from ERP 7 includes the following:

  • Minor changes to specific instructions

Source

Mabel L. Rice, author. Family History Questionnaire. Language Acquisition Studies Lab. University of Kansas, Lawrence, KS.

General References

Rice, M. L., Haney, K. R., & Wexler, K. (1998). Family histories of children with SLI who show extended optional infinitives. Journal of Speech, Language, and Hearing Research, 41, 419–432.

Protocol ID:

200401

Variables:
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX200401_Family_History_Speech_Language_Impairment_Awkward_Sentence_Structure
PX200401090900 Has anyone in your child's family had any more
other type of communication disorder such as: Has awkward sentence structures when writing or talking show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Difficulty_Explaining_Things
PX200401091200 Has anyone in your child's family had any more
other type of communication disorder such as: Has difficulty explaining things show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Difficulty_Learning_Read
PX200401050100 Has anyone in your child's family had more
difficulty learning to read or had problems with school work? (e.g. repeated a grade) show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Difficulty_Learning_Read_Details
PX200401050200 Has anyone in your child's family had more
difficulty learning to read or had problems with school work? (e.g. repeated a grade) If Yes, what are the details? show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Difficulty_Learning_Talk
PX200401020000 When your child was two years old, were you more
concerned that he/she was having difficulty learning to talk? show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Does_Not_Read
PX200401090400 Has anyone in your child's family had any more
other type of communication disorder such as: Doesn't like to read show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Does_Not_Read_Well
PX200401090500 Has anyone in your child's family had any more
other type of communication disorder such as: Doesn't read well show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Hard_Follow
PX200401091100 Has anyone in your child's family had any more
other type of communication disorder such as: Is hard to follow when (s)he tells you something, such as a personal experience show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Hearing_Difficulty
PX200401070000 Does anyone in your child's family have a more
hearing difficulty? show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Less_Talkative
PX200401090200 Has anyone in your child's family had any more
other type of communication disorder such as: Is less talkative show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Mispronounce_Long_Words
PX200401091000 Has anyone in your child's family had any more
other type of communication disorder such as: Mispronounces long words show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Poorer_Vocabulary
PX200401090700 Has anyone in your child's family had any more
other type of communication disorder such as: Has a poorer vocabulary than other family members show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Poor_Speller
PX200401090800 Has anyone in your child's family had any more
other type of communication disorder such as: Is a poor speller show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Retardation
PX200401060000 Has anyone in your child's family been more
diagnosed as mentally retarded? show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Slow_Talk
PX200401080000 Has anyone in your child's family been slow more
in learning to talk? show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Speech_Language_Therapy
PX200401040100 Has anyone in your child's family had speech more
or language therapy? show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Speech_Language_Therapy_Purpose
PX200401040300 Has anyone in your child's family had speech more
or language therapy? If Yes, What for? show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Speech_Language_Therapy_Relationship
PX200401040200 Has anyone in your child's family had speech more
or language therapy? If Yes, Relationship to child? show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Stuttering
PX200401090100 Has anyone in your child's family had any more
other type of communication disorder such as: Stuttering show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Talking_Short_Sentences
PX200401010000 By age 2, was your child talking in short more
phrases or sentences? show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Thinking_Words
PX200401090600 Has anyone in your child's family had any more
other type of communication disorder such as: Has difficulty thinking of words (s)he wants to say when talking show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Trouble_CarryOn_Conversation
PX200401090300 Has anyone in your child's family had any more
other type of communication disorder such as: Has a hard time carrying on a conversation show less
N/A
PX200401_Family_History_Speech_Language_Impairment_Trouble_Understanding_Child
PX200401030000 At this time, do people frequently have more
trouble understanding your child? show less
N/A
Speech, Language and Hearing
Measure Name:

Family History of Speech and Language Impairment

Release Date:

October 8, 2010

Definition

This measure is a questionnaire to identify family history of speech and language impairment.

Purpose

This measure can be used to assess familial risk factors related to speech and language impairment.

Keywords

Family history, Speech, Language, Speech and Hearing