Initial psychometric analysis of novel instruments to assess decisional distress and decisional uncertainty in women who have considered using preimplantation genetic testing
Objective To analyze psychometric properties of two novel instruments assessing decisional distress and uncertainty experienced by individuals considering preimplantation genetic testing (PGT). Methods The new PGT Decisional Distress instrument (22 items) assesses negative/positive emotions. The new...
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| Veröffentlicht in: | Prenatal diagnosis 2020-09, Vol.40 (10), p.1220-1227 |
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| creator | Pastore, Lisa M. Rubin, Lisa R. SantaBarbara, Jennifer N. Stelling, James Lobel, Marci |
| description | Objective
To analyze psychometric properties of two novel instruments assessing decisional distress and uncertainty experienced by individuals considering preimplantation genetic testing (PGT).
Methods
The new PGT Decisional Distress instrument (22 items) assesses negative/positive emotions. The new PGT Decisional Uncertainty instrument assesses Clarity about test benefits/disadvantages (5 items) and Certainty of having adequate information/support to make a good decision (7 items). Scales ranged from 0 to 4. Psychometrics (central tendencies, internal consistency reliability, and discriminant validity) were evaluated. Stratified analysis by decision stage was conducted. All participants had considered or used PGT in the previous 6 months.
Results
N = 106 females (mean age 36.5 ± 4.8 years; 16% non‐Caucasian; 9% Hispanic) across 16 US states completed an online anonymous questionnaire. On average, respondents reported minimal distress (mean 0.96), high clarity (mean 3.26), and high certainty (mean 3.06), particularly those who had already decided compared to undecided women (P ≤ .02). Instruments had excellent internal consistency (Cronbach's α's 0.92‐0.94) and displayed sufficient inter‐individual variability (SD's 0.75‐0.89). Correlations confirmed expected patterns of association between instruments (P's |
| doi_str_mv | 10.1002/pd.5730 |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_pubme</sourceid><recordid>TN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_10041134</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>2398620312</sourcerecordid><originalsourceid>FETCH-LOGICAL-c4340-5026b9f2bae5762936472d025bf2131333f30f3def6e4b0b1bc145ae465ba5073</originalsourceid><addsrcrecordid>eNp1ktuKFDEQhoMo7riKbyABLxRk1py6e_pqkfW0sKAXeh3SSfVMlu6kTdKz9Ev5jNY467IK3iSh6uOvv6pCyHPOzjhj4u3kzqpGsgdkxVnbrJkQ8iFZMY5vuan4CXmS8zWCG9E2j8mJFLJuKt6uyM_L4Is3A53yYndxhJK8pSaYYck-09jTEPcwUB9ySfMIoWRaIjU5Q87UgfXZR6Sp8wgcYia4-_E5WEjF-FAWFKE3WALPXaQ7swdqY8jeQQJH5-zDlk4J_DgNJhRTUIBuIUBBRwVywfxT8qg3Q4Znt_cp-f7xw7eLz-urL58uL95dra2Siq0rJuqu7UVnoGpq0cpaNcIxUXW94JJLKXvJeumgr0F1rOOd5aoyoOqqMxVr5Ck5P-pOczeCs9h3MoOekh9NWnQ0Xv-dCX6nt3GvcRuKc6lQ4fWtQoo_ZnSvR58tDNgaxDlrIdtNLZjkAtGX_6DXcU44PKSUUrjXhjOkXh0pm2LOCfo7N5wdygo9OX34BEi-uG_-jvuzdQTeHIEbP8DyPx399f1vuV9V8b-L</addsrcrecordid><sourcetype>Open Access Repository</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2444730710</pqid></control><display><type>article</type><title>Initial psychometric analysis of novel instruments to assess decisional distress and decisional uncertainty in women who have considered using preimplantation genetic testing</title><source>MEDLINE</source><source>Wiley Journals</source><creator>Pastore, Lisa M. ; Rubin, Lisa R. ; SantaBarbara, Jennifer N. ; Stelling, James ; Lobel, Marci</creator><creatorcontrib>Pastore, Lisa M. ; Rubin, Lisa R. ; SantaBarbara, Jennifer N. ; Stelling, James ; Lobel, Marci</creatorcontrib><description>Objective
To analyze psychometric properties of two novel instruments assessing decisional distress and uncertainty experienced by individuals considering preimplantation genetic testing (PGT).
Methods
The new PGT Decisional Distress instrument (22 items) assesses negative/positive emotions. The new PGT Decisional Uncertainty instrument assesses Clarity about test benefits/disadvantages (5 items) and Certainty of having adequate information/support to make a good decision (7 items). Scales ranged from 0 to 4. Psychometrics (central tendencies, internal consistency reliability, and discriminant validity) were evaluated. Stratified analysis by decision stage was conducted. All participants had considered or used PGT in the previous 6 months.
Results
N = 106 females (mean age 36.5 ± 4.8 years; 16% non‐Caucasian; 9% Hispanic) across 16 US states completed an online anonymous questionnaire. On average, respondents reported minimal distress (mean 0.96), high clarity (mean 3.26), and high certainty (mean 3.06), particularly those who had already decided compared to undecided women (P ≤ .02). Instruments had excellent internal consistency (Cronbach's α's 0.92‐0.94) and displayed sufficient inter‐individual variability (SD's 0.75‐0.89). Correlations confirmed expected patterns of association between instruments (P's < .01), indicating discriminant validity.
Conclusion
We document initial reliability and validity of new instruments to measure emotional distress and uncertainty in female patients who have recently considered PGT for single‐gene or chromosomal disorders.</description><identifier>ISSN: 0197-3851</identifier><identifier>ISSN: 1097-0223</identifier><identifier>EISSN: 1097-0223</identifier><identifier>DOI: 10.1002/pd.5730</identifier><identifier>PMID: 32367519</identifier><language>eng</language><publisher>Chichester, UK: John Wiley & Sons, Ltd</publisher><subject>Adult ; Clarity ; Consistency ; Decision analysis ; Decision Making ; Emotions ; Female ; Genetic screening ; Humans ; Middle Aged ; Pregnancy ; Preimplantation Diagnosis - psychology ; Privacy ; Psychological Distress ; Psychometrics ; Psychometrics - methods ; Quantitative psychology ; Reliability analysis ; Reproducibility of Results ; Surveys and Questionnaires ; Uncertainty ; United States ; Validity</subject><ispartof>Prenatal diagnosis, 2020-09, Vol.40 (10), p.1220-1227</ispartof><rights>2020 John Wiley & Sons, Ltd.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4340-5026b9f2bae5762936472d025bf2131333f30f3def6e4b0b1bc145ae465ba5073</citedby><cites>FETCH-LOGICAL-c4340-5026b9f2bae5762936472d025bf2131333f30f3def6e4b0b1bc145ae465ba5073</cites><orcidid>0000-0001-9908-1928</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1002%2Fpd.5730$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1002%2Fpd.5730$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>230,314,780,784,885,1417,27924,27925,45574,45575</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/32367519$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Pastore, Lisa M.</creatorcontrib><creatorcontrib>Rubin, Lisa R.</creatorcontrib><creatorcontrib>SantaBarbara, Jennifer N.</creatorcontrib><creatorcontrib>Stelling, James</creatorcontrib><creatorcontrib>Lobel, Marci</creatorcontrib><title>Initial psychometric analysis of novel instruments to assess decisional distress and decisional uncertainty in women who have considered using preimplantation genetic testing</title><title>Prenatal diagnosis</title><addtitle>Prenat Diagn</addtitle><description>Objective
To analyze psychometric properties of two novel instruments assessing decisional distress and uncertainty experienced by individuals considering preimplantation genetic testing (PGT).
Methods
The new PGT Decisional Distress instrument (22 items) assesses negative/positive emotions. The new PGT Decisional Uncertainty instrument assesses Clarity about test benefits/disadvantages (5 items) and Certainty of having adequate information/support to make a good decision (7 items). Scales ranged from 0 to 4. Psychometrics (central tendencies, internal consistency reliability, and discriminant validity) were evaluated. Stratified analysis by decision stage was conducted. All participants had considered or used PGT in the previous 6 months.
Results
N = 106 females (mean age 36.5 ± 4.8 years; 16% non‐Caucasian; 9% Hispanic) across 16 US states completed an online anonymous questionnaire. On average, respondents reported minimal distress (mean 0.96), high clarity (mean 3.26), and high certainty (mean 3.06), particularly those who had already decided compared to undecided women (P ≤ .02). Instruments had excellent internal consistency (Cronbach's α's 0.92‐0.94) and displayed sufficient inter‐individual variability (SD's 0.75‐0.89). Correlations confirmed expected patterns of association between instruments (P's < .01), indicating discriminant validity.
Conclusion
We document initial reliability and validity of new instruments to measure emotional distress and uncertainty in female patients who have recently considered PGT for single‐gene or chromosomal disorders.</description><subject>Adult</subject><subject>Clarity</subject><subject>Consistency</subject><subject>Decision analysis</subject><subject>Decision Making</subject><subject>Emotions</subject><subject>Female</subject><subject>Genetic screening</subject><subject>Humans</subject><subject>Middle Aged</subject><subject>Pregnancy</subject><subject>Preimplantation Diagnosis - psychology</subject><subject>Privacy</subject><subject>Psychological Distress</subject><subject>Psychometrics</subject><subject>Psychometrics - methods</subject><subject>Quantitative psychology</subject><subject>Reliability analysis</subject><subject>Reproducibility of Results</subject><subject>Surveys and Questionnaires</subject><subject>Uncertainty</subject><subject>United States</subject><subject>Validity</subject><issn>0197-3851</issn><issn>1097-0223</issn><issn>1097-0223</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2020</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNp1ktuKFDEQhoMo7riKbyABLxRk1py6e_pqkfW0sKAXeh3SSfVMlu6kTdKz9Ev5jNY467IK3iSh6uOvv6pCyHPOzjhj4u3kzqpGsgdkxVnbrJkQ8iFZMY5vuan4CXmS8zWCG9E2j8mJFLJuKt6uyM_L4Is3A53yYndxhJK8pSaYYck-09jTEPcwUB9ySfMIoWRaIjU5Q87UgfXZR6Sp8wgcYia4-_E5WEjF-FAWFKE3WALPXaQ7swdqY8jeQQJH5-zDlk4J_DgNJhRTUIBuIUBBRwVywfxT8qg3Q4Znt_cp-f7xw7eLz-urL58uL95dra2Siq0rJuqu7UVnoGpq0cpaNcIxUXW94JJLKXvJeumgr0F1rOOd5aoyoOqqMxVr5Ck5P-pOczeCs9h3MoOekh9NWnQ0Xv-dCX6nt3GvcRuKc6lQ4fWtQoo_ZnSvR58tDNgaxDlrIdtNLZjkAtGX_6DXcU44PKSUUrjXhjOkXh0pm2LOCfo7N5wdygo9OX34BEi-uG_-jvuzdQTeHIEbP8DyPx399f1vuV9V8b-L</recordid><startdate>202009</startdate><enddate>202009</enddate><creator>Pastore, Lisa M.</creator><creator>Rubin, Lisa R.</creator><creator>SantaBarbara, Jennifer N.</creator><creator>Stelling, James</creator><creator>Lobel, Marci</creator><general>John Wiley & Sons, Ltd</general><general>Wiley Subscription Services, Inc</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7QP</scope><scope>7T5</scope><scope>7T7</scope><scope>7TK</scope><scope>7TM</scope><scope>8FD</scope><scope>C1K</scope><scope>FR3</scope><scope>H94</scope><scope>K9.</scope><scope>P64</scope><scope>RC3</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0001-9908-1928</orcidid></search><sort><creationdate>202009</creationdate><title>Initial psychometric analysis of novel instruments to assess decisional distress and decisional uncertainty in women who have considered using preimplantation genetic testing</title><author>Pastore, Lisa M. ; Rubin, Lisa R. ; SantaBarbara, Jennifer N. ; Stelling, James ; Lobel, Marci</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4340-5026b9f2bae5762936472d025bf2131333f30f3def6e4b0b1bc145ae465ba5073</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2020</creationdate><topic>Adult</topic><topic>Clarity</topic><topic>Consistency</topic><topic>Decision analysis</topic><topic>Decision Making</topic><topic>Emotions</topic><topic>Female</topic><topic>Genetic screening</topic><topic>Humans</topic><topic>Middle Aged</topic><topic>Pregnancy</topic><topic>Preimplantation Diagnosis - psychology</topic><topic>Privacy</topic><topic>Psychological Distress</topic><topic>Psychometrics</topic><topic>Psychometrics - methods</topic><topic>Quantitative psychology</topic><topic>Reliability analysis</topic><topic>Reproducibility of Results</topic><topic>Surveys and Questionnaires</topic><topic>Uncertainty</topic><topic>United States</topic><topic>Validity</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Pastore, Lisa M.</creatorcontrib><creatorcontrib>Rubin, Lisa R.</creatorcontrib><creatorcontrib>SantaBarbara, Jennifer N.</creatorcontrib><creatorcontrib>Stelling, James</creatorcontrib><creatorcontrib>Lobel, Marci</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Calcium & Calcified Tissue Abstracts</collection><collection>Immunology Abstracts</collection><collection>Industrial and Applied Microbiology Abstracts (Microbiology A)</collection><collection>Neurosciences Abstracts</collection><collection>Nucleic Acids Abstracts</collection><collection>Technology Research Database</collection><collection>Environmental Sciences and Pollution Management</collection><collection>Engineering Research Database</collection><collection>AIDS and Cancer Research Abstracts</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Biotechnology and BioEngineering Abstracts</collection><collection>Genetics Abstracts</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Prenatal diagnosis</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Pastore, Lisa M.</au><au>Rubin, Lisa R.</au><au>SantaBarbara, Jennifer N.</au><au>Stelling, James</au><au>Lobel, Marci</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Initial psychometric analysis of novel instruments to assess decisional distress and decisional uncertainty in women who have considered using preimplantation genetic testing</atitle><jtitle>Prenatal diagnosis</jtitle><addtitle>Prenat Diagn</addtitle><date>2020-09</date><risdate>2020</risdate><volume>40</volume><issue>10</issue><spage>1220</spage><epage>1227</epage><pages>1220-1227</pages><issn>0197-3851</issn><issn>1097-0223</issn><eissn>1097-0223</eissn><abstract>Objective
To analyze psychometric properties of two novel instruments assessing decisional distress and uncertainty experienced by individuals considering preimplantation genetic testing (PGT).
Methods
The new PGT Decisional Distress instrument (22 items) assesses negative/positive emotions. The new PGT Decisional Uncertainty instrument assesses Clarity about test benefits/disadvantages (5 items) and Certainty of having adequate information/support to make a good decision (7 items). Scales ranged from 0 to 4. Psychometrics (central tendencies, internal consistency reliability, and discriminant validity) were evaluated. Stratified analysis by decision stage was conducted. All participants had considered or used PGT in the previous 6 months.
Results
N = 106 females (mean age 36.5 ± 4.8 years; 16% non‐Caucasian; 9% Hispanic) across 16 US states completed an online anonymous questionnaire. On average, respondents reported minimal distress (mean 0.96), high clarity (mean 3.26), and high certainty (mean 3.06), particularly those who had already decided compared to undecided women (P ≤ .02). Instruments had excellent internal consistency (Cronbach's α's 0.92‐0.94) and displayed sufficient inter‐individual variability (SD's 0.75‐0.89). Correlations confirmed expected patterns of association between instruments (P's < .01), indicating discriminant validity.
Conclusion
We document initial reliability and validity of new instruments to measure emotional distress and uncertainty in female patients who have recently considered PGT for single‐gene or chromosomal disorders.</abstract><cop>Chichester, UK</cop><pub>John Wiley & Sons, Ltd</pub><pmid>32367519</pmid><doi>10.1002/pd.5730</doi><tpages>8</tpages><orcidid>https://orcid.org/0000-0001-9908-1928</orcidid><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 0197-3851 |
| ispartof | Prenatal diagnosis, 2020-09, Vol.40 (10), p.1220-1227 |
| issn | 0197-3851 1097-0223 1097-0223 |
| language | eng |
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| source | MEDLINE; Wiley Journals |
| subjects | Adult Clarity Consistency Decision analysis Decision Making Emotions Female Genetic screening Humans Middle Aged Pregnancy Preimplantation Diagnosis - psychology Privacy Psychological Distress Psychometrics Psychometrics - methods Quantitative psychology Reliability analysis Reproducibility of Results Surveys and Questionnaires Uncertainty United States Validity |
| title | Initial psychometric analysis of novel instruments to assess decisional distress and decisional uncertainty in women who have considered using preimplantation genetic testing |
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