Comparing cancer genetic counselling using telegenetics with in-person and telephone appointments: Results of a partially randomised patient-preference pilot study

Abstract

Introduction Direct-to-patient telegenetics, which uses video conferencing to connect health professionals directly to patients’ devices, has been widely adopted during the pandemic. However, limited evidence currently supports its use in cancer genetic counselling. Methods Before the pandemic, we conducted a two-arm partially randomised patient-preference pilot trial to evaluate direct-to-patient telegenetics for patients and genetic counsellors. Patients were randomised to a standard care (telephone/in-person) or direct-to-patient telegenetics appointment. Patients completed questionnaires before, during and after appointments measuring: psychological distress, perceived genetic counsellor empathy, telegenetics satisfaction and technical challenges. Genetic counsellor-reported outcomes –measured using purpose-designed questionnaires– included telegenetics satisfaction, therapeutic alliance and time for assessment. Open-ended patient and genetic counsellor questionnaire responses were synthesised using content analysis. Results Fifty-six patients and seven genetic counsellors participated. Thirteen patients switched appointment type. No significant differences in distress ( P  =  0.84) were identified between direct-to-patient telegenetics and standard care. Perceived genetic counsellor empathy was high for all appointment types. There was no evidence of differences in reported maximum empathy scores between direct-to-patient telegenetics and standard care [telephone ( P  =  0.57); in-person ( P  =  0.44)]. Patients reported high direct-to-patient telegenetics satisfaction despite technical challenges in most appointments (65%). Genetic counsellors were satisfied with direct-to-patient telegenetics and perceived high therapeutic alliance irrespective of appointment type. No significant differences in genetic counsellor time were identified between direct-to-patient telegenetics and standard care [telephone ( P > 0.90); in-person ( P  =  0.35)]. Discussion Our results suggest that direct-to-patient telegenetics is a satisfactory service delivery model that does not appear to compromise patient–genetic counsellor relationships or increase patient distress. These findings support direct-to-patient telegenetics use in cancer genetic counselling, although larger trials are needed.