Patient-Reported Outcomes and Experiences with Population Genetic Testing Offered Through a Primary Care Network.
Genet Test Mol Biomarkers
; 25(2): 152-160, 2021 Feb.
Article
em En
| MEDLINE
| ID: mdl-33596141
ABSTRACT
Aims:
To explore patient experiences in a large-scale primary care-based, preemptive genetic testing program.Methods:
Patients who received genetic results from the initiative were invited to participate in an online survey 3 weeks postresult disclosure. A 6-month follow-up survey was sent to assess changes over time.Results:
The initial survey was completed by 1646 patients, with 544 completing the 6-month follow-up survey. The following outcomes were high overall patient-reported understanding of results (cancer 87%; cardiac 86%); perceived utility (75%); positive emotions (relieved 66.8%; happy 62.0%); family result sharing (67.6%); and satisfaction (87%), although analysis by demographic factors identified groups who may benefit from additional education and emotional support. Results-related health behaviors and discussions with providers increased over time (screening procedures 6.1% to 14.2% p < 0.001; provider discussion 10.3% to 25.3%, p < 0.001), and were more likely to take place for patients with positive cancer and/or cardiac results (39.8% vs. 7.6%, p < 0.001). Forty-seven percent of patients reported insurance discrimination concerns, and most (79.4%) were not familiar with privacy and nondiscrimination laws. Concerns regarding discrimination and negative emotions decreased between the two survey time points (privacy issues 44.6% to 35.1% p < 0.001; life insurance discrimination concerns 35.5% to 29.6%, p = 0.001; anxiety 8.1% to 3.3%, p < 0.001; and uncertainty 19.8% to 12.8%, p < 0.001). These findings led to the development and integration of additional patient resources to improve program implementation.Conclusion:
Our findings highlight patient experiences with and areas of need in a community-based genomic screening pilot initiative using a mixed primary care/genetics provider model to deliver precision medicine.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Pacientes
/
Letramento em Saúde
/
Genética Populacional
Tipo de estudo:
Prognostic_studies
/
Qualitative_research
Aspecto:
Patient_preference
Limite:
Adult
/
Aged
/
Aged80
/
Female
/
Humans
/
Male
/
Middle aged
País/Região como assunto:
America do norte
Idioma:
En
Revista:
Genet Test Mol Biomarkers
Assunto da revista:
BIOLOGIA MOLECULAR
/
GENETICA
Ano de publicação:
2021
Tipo de documento:
Article
País de afiliação:
Estados Unidos