Informing models of cancer genetic care in the era of multigene panel testing with patient-led recommendations
Affiliations
- PMID: 32851753
- DOI: 10.1002/jgc4.1317
Abstract
The study describes patient-reported experiences and recommendations to improve the genetic counseling and multigene panel testing (MGPT) process. A descriptive mixed-method study with concurrently collected and integrated qualitative and quantitative data was conducted. Eligible participants were English-speaking adults with a breast or gynecologic cancer diagnosis who had received genetic counseling and testing with a MGPT from one Comprehensive Cancer Center. Satisfaction with the genetic counseling, genetic knowledge using a recently validated scale (KnowGene), the multidimensional impact of cancer risk assessment (MICRA), family communication, and the association with demographic factors were evaluated. To supplement the large quantitative data set, qualitative focus group responses and open-ended text items were collected. Univariate and multivariable associations between each outcome of interest and personal characteristics were assessed. Qualitative data were content-analyzed. 603 participants completed the survey (48% response rate) and 10 individuals participated in the focus groups. Participants were mostly Caucasian, educated with a college degree or more, and female with median age 58 (24-91), and 78% of participants had a breast cancer diagnosis. Of all individuals undergoing genetic testing using a MGPT, 13% had a pathogenic variant identified, and 30% had a variant of uncertain significance (VUS). Overall, participants reported satisfaction with the genetic counseling and testing process (mean 36.9 [SD 4.7]). On average, participants had 7 incorrect answers out of 19 on the genetic knowledge scale (mean 12.3 [SD 3.4]). MICRA scores showed overall low levels of distress and uncertainty, as well as positive experiences, with wide variability (median 17 [0-84]). Age, marital status, education level, type of cancer diagnosis, and genetic testing results were significantly associated with outcomes. Most participants communicated genetic testing results to mainly female first-degree relatives. A wide range of individual preferences affecting overall satisfaction, or suggestions for improvement were shared. As new models of streamlined cancer genetic services are being clinically implemented, approaches should continue to assess and tailor the process based on patients' informational and emotional needs.
Keywords: cancer genetic counseling; multigene-panel testing; patient reported outcomes.
© 2020 National Society of Genetic Counselors.
Similar articles
- Impact of Panel Gene Testing for Hereditary Breast and Ovarian Cancer on Patients.J Genet Couns. 2017 Oct;26(5):1116-1129. doi: 10.1007/s10897-017-0090-y. Epub 2017 Mar 29.PMID: 28357778 Free PMC article.
- Palliative care experiences of adult cancer patients from ethnocultural groups: a qualitative systematic review protocol.JBI Database System Rev Implement Rep. 2015 Jan;13(1):99-111. doi: 10.11124/jbisrir-2015-1809.PMID: 26447011
- Qualitative Study.2020 Jul 1. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2020 Jan–.PMID: 29262162 Free Books & Documents. Review.
- Family communication and patient distress after germline genetic testing in individuals with pancreatic ductal adenocarcinoma.Cancer. 2019 Jul 15;125(14):2488-2496. doi: 10.1002/cncr.32077. Epub 2019 Apr 12.PMID: 30980401
- Health professionals' experience of teamwork education in acute hospital settings: a systematic review of qualitative literature.JBI Database System Rev Implement Rep. 2016 Apr;14(4):96-137. doi: 10.11124/JBISRIR-2016-1843.PMID: 27532314 Review.
No hay comentarios:
Publicar un comentario