There is widespread recognition of the need to integrate primary- and secondary/tertiary-care services, but the most appropriate model of service delivery remains to be defined (Campbell et al, 1995
, Donnai et al, 2000
). This study reports on a cluster randomised trial of a novel model of service delivery and presents patients’ expectations of cancer genetic services and a comparison of patients’ satisfaction with two service models. Patient satisfaction is both an objective and outcome of care, and is therefore an important dimension of any consideration of the best configuration of patient services. In addition, satisfied patients are more likely to comply with advice given, which is an important aspect of any service in which patient information and advice comprises an important element of the intervention (Baker, 1991
Expectations of cancer genetic services
About 80% of women stated that they wanted comprehensive information about the implications of their family history of cancer. The items about which women were most concerned to get information or receive services were those connected with their own risk and its possible reduction and early detection of breast cancer. Over 60% of women wanted a breast examination/mammography to have reassurance that they did not have breast cancer and regarded access to breast screening by mammogram and regular check-ups as very important. This underlines the demand for a multidisciplinary service providing both clinical genetic and surgical services, as noted by others (Brain et al, 2000
). A recognition that increased cancer worry leads to a greater expressed need for information and for reassurance from follow-up checks is also important to guide clinical practice.
Assessment of cancer genetic clinics Patient satisfaction with services received
Levels of satisfaction with information given, staff attitudes and length of consultation were high. There were no significant differences between the trial groups. The lowest levels of satisfaction were found in those women with levels of cancer risk that were not significantly above population levels, and who were discharged with reassurance only. This reinforces the interpretation that many women seek a clinical examination to allay fears of current cancer (and possibly to have access to future screening such as mammography). It is also consistent with the previous finding that genetic counselling has less impact on general levels of patient satisfaction than other medical procedures, since it rarely ‘suggests treatment or eliminates uncertainties’ (Shiloh et al, 1990
At the 4-week follow-up, 14% of the community clinic (novel service) group and 25% of the regional clinic (standard service) group stated that they intended to seek further advice, although the reasons for this were not primarily due to dissatisfaction with the service they received. The difference between the two low-risk and the two moderate/high-risk groups of women in the trial were not statistically significant. At the 6-month follow-up, only three women had actually attended another clinic for advice. Thus, provision of a community service staffed by nurses did not lead to an increase in the rate of care seeking after the consultation.
GPs and patients expressed no clear preference for either model of service. Women who had attended a clinic consultation were approximately equally divided between expressing preference for a regional clinic, a community clinic and having no preference. One reason for this may be that many women are working and so may not find it any easier to get to a clinic near their home than to the regional clinic. Similarly, about half of the women had no strong preference when asked for their choice of clinic personnel. Among those who expressed a preference, the combination of being seen by a genetic nurse and consultant breast surgeon was the most popular.
Consultation times were greater when women were seen by a nurse at a community clinic (novel service). This is largely due to the time taken to document the woman's family history, but may also be because women feel more relaxed talking to a nurse or feel reluctant to take up the doctor's time. However, despite the shorter consultation times at the regional clinics, most women were highly satisfied with the duration of all consultations.
Management of women with a family history of breast cancer, but who do not have an increased risk
In all, 36% of women included in the study were not significantly above population levels of cancer risk. These women were less satisfied with the service received than women with a higher cancer risk. Most of these women were satisfied with the consultation. However, the novel service group was less satisfied than other groups of women with the amount and quality of information given. A relationship between patient satisfaction and rating of comprehension of the information received has been reported (Kincey et al, 1975
), and failure to reassure has been linked to a failure to provide explanations at women's level of understanding. (Grande et al, 2002
) It is possible, therefore, that the lower satisfaction reflects explanation and reassurance that is not targeted at the major concerns of these women which are a perceived need for examination for current (and future) cancer rather than principally a need for information about genetic risk. There is a need to tailor the explanation/reassurance by health staff to the background understanding and concerns of these women in order to improve services for these women.
More than a third of low-risk women who attended the community but not the regional clinic stated that they wished access to other services (most often mammography, breast examination, regular check-ups and screening for other cancers) at the 4-week follow-up, although this fell to 22% by the time of the 6-month follow-up. Thus, although most low-risk women were satisfied with being seen by a nurse at a community clinic, many still preferred to have the choice of accessing other services, even after being reassured that their risk is low.
Although most of the low-risk women, who received a letter of reassurance and advice but not a clinic appointment, found the letter quite or very helpful, about a third found it, at most, only a little helpful. A similar percentage said there were other items about which they would have liked information. In all, 50% stated that they wanted a check that they did not have current cancer, 64% that they wanted mammography and 77% that they wanted regular check-ups. At the four-week follow-up, 23% of this group said they intended to seek further advice and at the 6-month follow-up, 14% had actually done so.
Relative costs associated with the two service models
Since GPs (Campbell et al, 2003
) and patients expressed no clear preference for any specific service location or staffing configuration, cost is likely to be a major determinant of the nature of these services in the near future. A preliminary comparison of staff time and travel costs in the two trial groups revealed that the novel (community) service was associated with approximately 30% lower staff costs with the assumptions given above. The staff costs of the novel service could be further reduced if the medium/high-risk women were referred to a specialist nurse for breast examination/mammography and did not have a second genetic counselling consultation (since new issues were rarely raised for discussion at this second appointment).
The costs of the standard service could be reduced if the moderate/high-risk patients were assessed at the regional clinic by nurse practitioners who were dually trained in genetics and oncology rather than by a medical consultant or associate specialist staff. This would reduce standard service staff costs to similar levels to the novel service.
It has been previously shown that being seen by nurses trained in breast care (including performing breast examinations for cancer) was acceptable to women and to GPs (Garvican et al, 1998
). However, any new service model would first require to be evaluated with respect to patient outcomes and patient and staff satisfaction.
Costs to patients in terms of time and money were greater for attendance at the regional centre. This is consistent with the evaluations of other specialist outreach services (Bowling et al, 1997
). However, since the low-risk patients, who were not offered an appointment at the regional centre, were the least satisfied it would appear that these costs were not a major factor influencing their preference for a particular service.
The potential to decrease nurse/patient contact time could be explored since shorter consultation times (at regional clinics) were not associated with lower levels of patient satisfaction or poorer clinical outcomes. Providing women with written and/or video information about the process and content of genetic counselling prior to their clinic attendance may be one way to achieve this and may in itself contribute to higher levels of patient satisfaction (Austoker and Ong 1994
; Hallowell et al, 1997
; Cull et al, 1998