McDonald Eileen, Lamb Amanda, Grillo Barbara, Lucas Lee, Miesfeldt Susan
MaineHealth, Portland, ME, 04101, USA.
J Genet Couns. 2014 Apr;23(2):221-8. doi: 10.1007/s10897-013-9652-9. Epub 2013 Sep 8.
This work examined acceptability of cancer genetic counseling models of service delivery among Maine residents at risk for hereditary cancer susceptibility disorders. Pre-counseling, participants ranked characteristics reflecting models of care from most to least important including: mode-of-communication (in-person versus telegenetics), provider level of training (genetic specialty versus some training/experience), delivery format (one-on-one versus group counseling), and location (local versus tertiary service requiring travel). Associations between models of care characteristic rankings and patient characteristics, including rural residence, perceived cancer risk, and perceived risk for a hereditary cancer risk susceptibility disorder were examined. A total of 149/300 (49.7% response rate) individuals from 11/16 Maine counties responded; 30.8% were from rural counties; 92.2% indicated that an important/the most important model of care characteristic is provider professional qualifications. Among other characteristics, 65.1% ranked one-on-one counseling as important/the most important. In-person and local counseling were ranked the two least important characteristics (51.8% and 52.1% important/the most important, respectively). Responses did not vary by patient characteristics with the exception of greater acceptance of group counseling among those at perceived high personal cancer risk. Cancer telegenetic services hold promise for access to expert providers in a one-on-one format for rurally remote clients.
这项研究考察了缅因州有遗传性癌症易感性疾病风险的居民对癌症遗传咨询服务模式的接受程度。在咨询前,参与者按照重要程度从高到低对反映护理模式的特征进行了排序,这些特征包括:沟通方式(面对面咨询与远程基因咨询)、提供者的培训水平(遗传专业与有一些培训/经验)、服务形式(一对一咨询与团体咨询)以及地点(当地服务与需要前往三级医疗机构的服务)。研究还考察了护理模式特征排名与患者特征之间的关联,这些患者特征包括农村居住情况、感知到的癌症风险以及感知到的遗传性癌症易感性疾病风险。来自缅因州16个县中的11个县的300名个体中有149人做出了回应(回应率为49.7%);30.8%来自农村县;92.2%的人表示护理模式的一个重要/最重要特征是提供者的专业资质。在其他特征方面,65.1%的人将一对一咨询列为重要/最重要的特征。面对面咨询和当地咨询被列为最不重要的两个特征(分别有51.8%和52.1%的人认为重要/最重要)。除了个人癌症风险较高的人群对团体咨询的接受度更高外,回应情况并未因患者特征而有所不同。癌症远程基因服务有望为偏远农村地区的客户提供一对一形式的专家咨询服务。