Evaluating telehealth cancer genetic counselling: impact on genetic counselling outcomes, patient satisfaction and acceptability

Abstract

Telegenetics is increasingly being used to deliver familial cancer services for hereditary breast/ovarian cancer (HBOC) to outreach areas; however, there has been little research evaluating this method of service delivery. This thesis reports on a multi-method evaluation of the effectiveness and acceptability of genetic counseling through videoconferencing. In Study One, practitioners delivering telegenetics services undertook semi-structured interviews, exploring their experiences and attitudes towards telegenetics. They reported feeling highly satisfied with telegenetics, as it was found to be convenient, efficient, cost effective, and minimized travel, whilst increasing access to rural areas. Disadvantages included being not being able to detect non-verbal cues, build rapport and having less time for emotional exploration. Study Two qualitatively explored the experiences and satisfaction of women who had received telegenetics services for HBOC genetic counselling. Women expressed high levels of satisfaction with telegenetics, most rating it eight out of ten, or higher. The majority of women described feeling a high degree of rapport with the off-site genetic clinician. One case, involving a recent cancer diagnosis, highlighted the need for practitioners to be mindful of the potentially complex psychosocial needs of women with a recent diagnosis. Study Three adopted a prospective, non-inferiority design to evaluate whether telegenetics was at least as effective as face-to-face genetic counselling across widely accepted measures of genetic counselling outcomes. It demonstrated that telegenetics was as effective as face-to-face counselling with regard to overall patient satisfaction with the genetic counselling service, and addressing generalised anxiety and depression. The videoconferencing connection did not affect the patient’s perception of empathy in relation to either the genetic clinician or genetic counsellor. Telegenetics performed better than face-to-face counselling in the areas of meeting patient expectations, promoting perceived personal control, and addressing cancer-specific anxiety. By contrast, face-to-face counselling was more effective than telegenetics in terms of increasing knowledge about HBOC. Overall, practitioners and patients were satisfied with telegenetics and perceived the advantages as outweighing the disadvantages. Telegenetics was found to be at least as effective, if not more so, than face-to-face genetic counselling across most outcome measures. Overall, this study has shown that telegenetics is an effective and efficient method of service delivery, and offers a viable alternative to face-to-face genetic counselling for HBOC