PMID- 23485718 OWN - NLM STAT- PubMed-not-MEDLINE DCOM- 20130317 LR - 20211021 IS - 2044-6055 (Electronic) IS - 2044-6055 (Linking) VI - 3 IP - 3 DP - 2013 Mar 13 TI - Development and validation of a brief screening instrument for psychosocial risk associated with genetic testing: a pan-Canadian cohort study. LID - 10.1136/bmjopen-2012-002227 [doi] LID - e002227 AB - 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 alpha 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. FAU - Esplen, Mary Jane AU - Esplen MJ AD - University Health Network, Toronto, Ontario, Canada. FAU - Cappelli, Mario AU - Cappelli M FAU - Wong, Jiahui AU - Wong J FAU - Bottorff, Joan L AU - Bottorff JL FAU - Hunter, Jon AU - Hunter J FAU - Carroll, June AU - Carroll J FAU - Dorval, Michel AU - Dorval M FAU - Wilson, Brenda AU - Wilson B FAU - Allanson, Judith AU - Allanson J FAU - Semotiuk, Kara AU - Semotiuk K FAU - Aronson, Melyssa AU - Aronson M FAU - Bordeleau, Louise AU - Bordeleau L FAU - Charlemagne, Nicole AU - Charlemagne N FAU - Meschino, Wendy AU - Meschino W LA - eng PT - Journal Article DEP - 20130313 PL - England TA - BMJ Open JT - BMJ open JID - 101552874 PMC - PMC3612753 EDAT- 2013/03/15 06:00 MHDA- 2013/03/15 06:01 PMCR- 2013/03/13 CRDT- 2013/03/15 06:00 PHST- 2013/03/15 06:00 [entrez] PHST- 2013/03/15 06:00 [pubmed] PHST- 2013/03/15 06:01 [medline] PHST- 2013/03/13 00:00 [pmc-release] AID - bmjopen-2012-002227 [pii] AID - 10.1136/bmjopen-2012-002227 [doi] PST - epublish SO - BMJ Open. 2013 Mar 13;3(3):e002227. doi: 10.1136/bmjopen-2012-002227.