Dataset Information

Development and validation of a brief screening instrument for psychosocial risk associated with genetic testing: a pan-Canadian cohort study.

ABSTRACT:

Objectives

To develop a brief, reliable and valid instrument to screen psychosocial risk among those who are undergoing genetic testing for Adult-Onset Hereditary Disease (AOHD).

Design

A prospective two-phase cohort study.

Setting

5 genetic testing centres for AOHD, such as cancer, Huntington's disease or haemochromatosis, in ambulatory clinics of tertiary hospitals across Canada.

Participants

141 individuals undergoing genetic testing were approached and consented to the instrument development phase of the study (Phase I). The Genetic Psychosocial Risk Instrument (GPRI) developed in Phase I was tested in Phase II for item refinement and validation. A separate cohort of 722 individuals consented to the study, 712 completed the baseline package and 463 completed all follow-up assessments. Most participants were female, at the mid-life stage. Individuals in advanced stages of the illness or with cognitive impairment or a language barrier were excluded.

Interventions

Phase I: GPRI items were generated from (1) a review of the literature, (2) input from genetic counsellors and (3) phase I participants. Phase II: further item refinement and validation were conducted with a second cohort of participants who completed the GPRI at baseline and were followed for psychological distress 1-month postgenetic testing results.

Primary and secondary outcome measures

GPRI, Hamilton Depression Rating Scale (HAM-D), Hamilton Anxiety Rating Scale (HAM-A), Brief Symptom Inventory (BSI) and Impact of Event Scale (IES).

Results

The final 20-item GPRI had a high reliability-Cronbach's ? at 0.81. The construct validity was supported by high correlations between GPRI and BSI and IES. The predictive value was demonstrated by a receiver operating characteristic curve of 0.78 plotting GPRI against follow-up assessments using HAM-D and HAM-A.

Conclusions

With a cut-off score of 50, GPRI identified 84% of participants who displayed distress postgenetic testing results, supporting its potential usefulness in a clinical setting.

SUBMITTER: Esplen MJ

PROVIDER: S-EPMC3612753 | biostudies-literature | 2013 Mar

REPOSITORIES: biostudies-literature

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Publications

Development and validation of a brief screening instrument for psychosocial risk associated with genetic testing: a pan-Canadian cohort study.

Esplen Mary Jane MJ Cappelli Mario M Wong Jiahui J Bottorff Joan L JL Hunter Jon J Carroll June J Dorval Michel M Wilson Brenda B Allanson Judith J Semotiuk Kara K Aronson Melyssa M Bordeleau Louise L Charlemagne Nicole N Meschino Wendy W

BMJ open 20130313 3

<h4>Objectives</h4>To develop a brief, reliable and valid instrument to screen psychosocial risk among those who are undergoing genetic testing for Adult-Onset Hereditary Disease (AOHD).<h4>Design</h4>A prospective two-phase cohort study.<h4>Setting</h4>5 genetic testing centres for AOHD, such as cancer, Huntington's disease or haemochromatosis, in ambulatory clinics of tertiary hospitals across Canada.<h4>Participants</h4>141 individuals undergoing genetic testing were approached and consented ...[more]

PMID: 23485718

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Dataset Information

Development and validation of a brief screening instrument for psychosocial risk associated with genetic testing: a pan-Canadian cohort study.

Objectives

Design

Setting

Participants

Interventions

Primary and secondary outcome measures

Results

Conclusions

Publications

Development and validation of a brief screening instrument for psychosocial risk associated with genetic testing: a pan-Canadian cohort study.

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