Pestoff Rebecka, Johansson Peter, Danielsson Henrik, Neher Margit, Gunnarsson Cecilia
Centre for Rare Diseases in Southeast Region of Sweden, Linköping University, Linköping, Sweden.
Division of Community Medicine, Department of Medical and Health Sciences, Linköping University, Linköping, Sweden.
Front Health Serv. 2022 Jun 23;2:848512. doi: 10.3389/frhs.2022.848512. eCollection 2022.
This study reports the process and preliminary findings of rapid implementation of telegenetic counseling in the context of Swedish healthcare and COVID-19 pandemic, from both a patient and a provider perspective. Fourty-nine patients and 6 healthcare professionals were included in this feasibility study of telegenetic counseling in a regional Department of Clinical Genetics in Sweden. Telegenetic counseling is here defined as providing genetic counseling to patients by video ( = 30) or telephone ( = 19) appointments. Four specific feasibility aspects were considered: acceptability, demand, implementation, and preliminary efficacy. Several measures were used including the Genetic Counseling Outcome Scale 24 (collected pre- and post-counseling); the Telehealth Usability Questionnaire; a short study specific evaluation and Visiba Care evaluations, all collected post-counseling. The measures were analyzed with descriptive statistics and the preliminary results show a high level of acceptance and demand, from both patients and providers. Results also indicate successful initial implementation in the regional Department of Clinical Genetics and preliminary efficacy, as shown by significant clinically important improvement in patients' empowerment levels.
本研究从患者和提供者的角度报告了在瑞典医疗保健和新冠疫情背景下快速实施远程遗传咨询的过程和初步结果。瑞典一个地区临床遗传学部门对49名患者和6名医疗保健专业人员进行了这项远程遗传咨询可行性研究。这里的远程遗传咨询定义为通过视频( = 30)或电话( = 19)预约为患者提供遗传咨询。考虑了四个具体的可行性方面:可接受性、需求、实施和初步疗效。使用了多种测量方法,包括遗传咨询结果量表24(咨询前后收集);远程医疗可用性问卷;一份简短的特定研究评估和Visiba Care评估,均在咨询后收集。这些测量方法采用描述性统计进行分析,初步结果显示患者和提供者的接受度和需求都很高。结果还表明在地区临床遗传学部门初步实施成功且具有初步疗效,患者的赋权水平有显著的临床重要改善。