E-genetics: exploring the acceptability and feasibility of using technology in cancer genetics services.

The use of information and communication technologies (ICTs) in the delivery of cancer genetics services could improve equality of access in rural areas and help meet the increasing demand for specialist genetics services. An online patient survey and focus groups with patients and staff from the Cancer Genetics Service for Wales (CGSW) were used to explore the acceptability and feasibility of utilizing ICTs within genetics services, which we have termed e-genetics. A total of 225 patients completed the online survey. Many aspects of e-genetics proposed in the survey were highly acceptable to patients, including an electronic version of the family history questionnaire, an email facility for cancer genetic queries, and a computerized decision-aid. Participants in the focus groups emphasized the importance of patient choice when developing new models of service delivery. For example, the use of genetic counselling via telemedicine was not considered to be preferable to face-to-face clinic appointments but could benefit those unable to travel. This article highlights the fact that e-genetics initiatives may not be appropriate for all cancer genetics service users. However, user-friendly developments that can be easily implemented and attend to individual needs could improve efficiency and cost-effectiveness, whilst providing high-quality services to remote areas.

Concerns and coping during cancer genetic risk assessment.

OBJECTIVE: To gain an 'in-depth' understanding of patients' concerns and their related coping strategies during the genetic risk assessment process. METHODS: Participants were the 'usual care' arm of a trial of a coping intervention targeted at men and women undergoing assessment of genetic risk for familial cancer. Participants completed questionnaires measuring the degree to which they experienced up to 11 concerns and which of 8 coping strategies they used to respond to each of them at entry into the programme and 1 month subsequently (before they received their risk information). FINDINGS: A majority of participants were at least 'quite worried' about all the identified concerns, although the levels of concern fell over the waiting period. Participants used several strategies in response to their varying concerns - although a primary coping strategy for each concern was identifiable. The emotion-focused strategies of acceptance and positive appraisal were generally used in response to concerns they could not change, and seeking social support was used primarily to gain information, but not emotional support from their family. Cluster analysis identified three unique clusters of coping responses. CONCLUSIONS: Genetic risk assessment comprises a number of different stressors each of which is coped with using different strategies.

Patient perceptions of a mobile cancer support unit in South Wales.

Many patients have to travel long distances to receive treatment and support for cancer, which can lead to increased anxiety and fatigue. Tenovus, the cancer charity, working with the NHS, has developed a new concept of closer-to-home delivery for chemotherapy and other cancer support - a mobile cancer support unit (Bus). Researchers at Cardiff University evaluated the Bus during its first year of operation. The evaluation aimed to determine who was using the Bus and to explore patients' perceptions about having their appointments on the Bus. Data were collected from patients, social care clients and their family and friends using a mixed-methods approach. Quantitative data were collected using postal surveys and qualitative data were collected through semi-structured interviews. In its first year, 3487 people visited the Bus, which included the delivery of 549 chemotherapy treatments. Patient attitudes towards the Bus were extremely positive. Respondents rated highly key aspects of the Bus including comfort and the level of care provided. This evaluation demonstrates that all users are highly receptive to this model of service delivery and agree that the Tenovus Bus is a unique mobile unit, providing excellent clinical and social care to cancer patients and their families.

"I have always believed I was at high risk..." The role of expectation in emotional responses to the receipt of an average, moderate or high cancer genetic risk assessment result: a thematic analysis of free-text questionnaire comments.

It is well-recognised that receipt of cancer genetic risk information can evoke a mix of both positive and negative emotional responses. Objective risk itself is not necessarily predictive of emotional response to receipt of risk information and the Cue Adaptive Reasoning Account (CARA; Renner, 2004) suggests that that the degree to which level of risk is consistent with expectations may influence emotional responses. This paper reports a thematic analysis of the free-text data structured around responses to the three risk labels: average, moderate or high. Data is reported from both 123 women and 15 men, including those with a past or current cancer diagnosis. Reactions to risk information appear to be dependent upon participants' pre-conceived expectations about their level of cancer risk. Many average risk respondents questioned the accuracy of their result, whereas high risk information was often expected. Findings are discussed in relation to the CARA model and clinical implications.