Computer support for interpreting family histories of breast and ovarian cancer in primary care: comparative study with simulated cases

Abstract

Objectives To evaluate the potential effect of computer support on general practitioners' management of familial breast and ovarian cancer, and to compare the effectiveness of two different types of computer program. Design Crossover experiment with balanced block design. Participants Of a random sample of 100 general practitioners from Buckinghamshire who were invited, 41 agreed to participate. From these, 36 were selected for a fully balanced study. Interventions Doctors managed 18 simulated cases: 6 with computerised decision support system Risk Assessment in Genetics (RAGs), 6 with Cyrillic (an established pedigree drawing program designed for clinical geneticists), and 6 with pen and paper. Main outcome measures Number of appropriate management decisions made (maximum 6), mean time taken to reach a decision, number of pedigrees accurately drawn (maximum 6). Secondary measures were method of support preferred for particular aspects of managing family histories of cancer; importance of specific information on cancer genetics that might be provided by an "ideal computer program." Results RAGs resulted in significantly more appropriate management decisions (median 6) than either Cyrillic (median 3) or pen and paper (median 3); median difference between RAGs and Cyrillic 2.5 (95% confidence interval 2.0 to 3.0; P < 0.0001). RAGs also resulted in significantly more accurate pedigrees (median 5) than both Cyrillic (median 3.5) and pen and paper (median 2); median difference between RAGs and Cyrillic 1.5 (1.0 to 2.0; P < 0.0001). The time taken to use RAGs (median 178 seconds) was 51 seconds longer per case (95% confidence interval 36 to 65; P < 0.0001) than pen and paper (median 124 seconds) but was less than Cyrillic (median 203 seconds; difference 23. (5 to 43; P = 0.02)). 33 doctors (92% (78% to 98%)) preferred using RAGs overall. The most important elements of an "ideal computer program" for genetic advice in primary care were referral advice, the capacity to create pedigrees, and provision of evidence and explanations to support advice. Conclusions RAGs could enable general practitioners to be more effective gatekeepers to genetics services, empowering them to reassure the majority of patients with a family history of breast and ovarian cancer who are not at increased genetic risk.

A randomized trial of specialist genetic assessment: psychological impact on women at different levels of familial breast cancer risk

“…Over the next few years, it is likely that initial genetic risk assessment will be conducted in different settings by primary care and, increasingly, nurse specialist staff. Further research must be undertaken to explore their potential role in the appropriate identification and management of at-risk women, the effectiveness of different strategies for assessing and communicating genetic risk information (Emery et al, 2000) and the acceptability of a filtered service structure to patients and providers. Recent consensus guidelines for assessing and stratifying familial breast cancer risk must be incorporated into clinical practice in order to minimize potential variation between the different health care professionals who are likely to be involved in the management of this patient group (British Association of Surgical Oncology Guidelines, 1998; Eccles et al, 2000).…”

A randomised comparison of UK genetic risk counselling services for familial cancer: psychosocial outcomes

“…Research initiatives have been undertaken to assist primary care teams in the identification of moderate and high-risk families who warrant further advice (Emery et al, 1999(Emery et al, , 2000, so that individuals can be properly triaged for primary care support, cancer screening or cancer genetic referral. Use of health services in the year after the cancer risk consultation are difficult to interpret in the absence of a control group which did not receive genetic counselling, but hospital attendance rates did appear to increase, probably reflecting the need for cancer screening; this could be audited in light of the new service guidelines.…”

Improving the referral process for familial breast cancer genetic counselling: findings of three randomised controlled trials of two interventions

“…In relation to genetics, Emery and colleagues have conducted extensive development work on a computerised intervention for primary care, but their reported evaluations so far, although very promising, have involved selfselected GPs assessing simulated patients with proxy outcomes. 10 The reported enthusiasm among GPs for computer systems 9,26 to assist them with genetics needs to be tested in the context of a busy surgery and normal workflow.…”

“…9,26 The intervention developed and evaluated here evolved over the early stages of the project, as described in Chapter 3, specifically to meet the target population's needs. 10 It was originally planned to use the only available breast cancer risk assessment software program, Cyrillic, and to disseminate it to intervention practices in a series of small group educational sessions, involving GPs, practice nurses and other staff as GPs felt appropriate. The combination of a commercially available package (which would have already been through extensive development and testing) and the individualised implementation strategy (which would increase the chances of potential users integrating it into existing clinics or routines) was thought to represent a potentially sustainable, pragmatic intervention with a reasonable probability of success.…”