What motivates interest in attending a familial cancer genetics clinic?

The motivation of people who seek advice about a family history of cancer was explored in a cross sectional study of new cancer referrals to five regional cancer genetics centres in England: the PACT (patient and clinical team) psychosocial study. One hundred sixty-two people took part. Measures were source of referral, estimated and perceived cancer risk, level of cancer worry, and personal and family-centred reasons for wanting to be seen in clinic. General practitioners referred more people than hospital doctors, and referred a larger proportion of people at low genetic risk of developing cancer. More than half of the participants had been the first to raise the issue of their family history of cancer. Personal motivation for referral is clearly different for those who have had a diagnosis of cancer and for those with children, compared to unaffected and childless people, and is characterised by altruistic concern for other family members rather than a perception of increased personal risk. Men and people from ethnic minorities are very significantly under-represented. Understanding people's motivation may be useful in targeting genetic counselling for people with a family history of cancer

Exploring doctor and patient views about risk communication and shared decision-making in the consultation.

Contains fulltext : 159385.pdf (publisher's version ) (Open Access)BACKGROUND: There have been significant conceptual developments regarding shared decision-making (SDM) and assessments of people's hypothetical preferences for involvement in treatment or care decisions. There are few data on the perceptions of patients and professionals about SDM in actual practice. OBJECTIVE: To explore, from paired doctor-patient interviews, participants' perceptions of SDM in the consultation and the level of consensus between the participants in the consultation process. DESIGN: Qualitative analysis of semi-structured interview data. SETTING AND PARTICIPANTS: Twenty general practitioners received training packages in 'risk communication' (RC) and 'SDM' to use as tools within the consultation. Forty patients with one of four conditions, for which a range of treatment options is available, were selected. Patient/doctor pairs were interviewed separately following consultations at four stages -'baseline' [general practitioner's (GP) usual consultation style], SDM training, RC alone, and both RC and SDM training. Interviews were transcribed and analysed using NVivo software. RESULTS: Risk communication interventions by doctors appeared to result in a greater perception of decisions being made in the consultation. High levels of satisfaction with consultations were evident before application of the interventions and did not change after the interventions. Doctors' and patients' perceptions of the consultations were highly congruent at all phases of the study. CONCLUSION: Shared decision-making and RC approaches were helpful in selected consultations and showed no detrimental effects to patients. However, the use of RC and SDM made only small differences to decision-making in consultations within the population studied. Increasing patient participation may be seen as more ethically justifiable than the traditional paternalistic approach but this needs to be set against the additional training costs incurred