title: Telegenetics use in presymptomatic genetic counselling: patient evaluations on satisfaction and quality of care.
abstract: In recent years, online counselling has been introduced in clinical genetics to increase patients' access to care and to reduce time and cost for both patients and professionals. Most telegenetics reports so far evaluated online oncogenetic counselling at remote health centres in regions with large travelling distances, generally showing positive patient outcomes. We think online counselling--including the use of supportive tools that are also available during in-person counseling--of presymptomatic patients in their homes can also be feasible and valuable for patients in relatively small regions. We performed a single-centre pilot study of online genetic counselling for 57 patients who were presymptomatic cardiogenetic (n=17), presymptomatic oncogenetic (n=34) and prenatal (3 couples). One-third of presymptomatic patients we approached consented to online counselling. Patient evaluations of practical aspects, satisfaction and psychological outcomes were assessed and compared with a matched control group. Patients managed to fulfil the preparations, were significantly more satisfied with their counsellor and counselling session than controls and were satisfied with the online counselling more than they expected to be beforehand. Psychological outcomes (decreased anxiety and increased control) did not differ with control patients. Technical problems occurred in almost half of online sessions. Nonetheless, online counselling in patients' homes proved to be feasible and was appreciated by a substantial part of presymptomatic patients at our genetics centre in the Netherlands. Based on these outcomes, we conclude online counselling can be a valuable addition to existing counselling options in regular patient care.
authors.affiliation: University of Groningen, University Medical Centre Groningen, Department of Genetics, Groningen, The Netherlands.
authors.forename: Ellen
authors.initials: E
authors.lastname: Otten
authors.affiliation: University of Groningen, University Medical Centre Groningen, Department of Genetics, Groningen, The Netherlands.
authors.forename: Erwin
authors.initials: E
authors.lastname: Birnie
authors.affiliation: Department of Health Psychology, University Medical Centre Groningen, University of Groningen, Groningen, The Netherlands.
authors.forename: Adelita V
authors.initials: AV
authors.lastname: Ranchor
authors.affiliation: University of Groningen, University Medical Centre Groningen, Department of Genetics, Groningen, The Netherlands.
authors.forename: Irene M
authors.initials: IM
authors.lastname: van Langen
mesh_terms: D058070:Asymptomatic Diseases; D005817:Genetic Counseling / Q000379:methods / Q000523:psychology* / Q000592:standards; D006801:Humans; D009426:Netherlands; D017060:Patient Satisfaction; D010361:Patients / Q000523:psychology; D011787:Quality of Health Care; D017216:Telemedicine / Q000379:methods / Q000592:standards*