Using the patient experience to develop a model of care for breast cancer follow-up.

Improvements in early detection and treatment of breast cancer and the reduction in mortality rates have led to an expansion in the numbers of patients accessing breast cancer follow-up clinics (Montgomery and Dixon 2008). This has resulted in a need to review follow-up services to address the current situation to the best effect (Burnet, Chapman, Wishart and Purushotham 2004). To meet the aims of the Cancer Plan (Department of Health (DOH) 2000) and more recently the Cancer Reform Strategy (DOH 2007) as well as the needs of the patients a reconfiguration and development of existing services at the study site was required.
The primacy of the stakeholder’s views was the driving force behind the research design. The research approach was used to involve the views of the patients, GPs, the clinical team and key people based in the NHS Trust. A focus group was used to identify the issues for patients and one-to-one interviews with GPs. These themes informed the patient and GP questionnaires. Key Informant interviews were conducted with members of the Multidisciplinary team (MDT) and key members of the clinical team.
The study outlines the nature of breast cancer follow-up services and the complexities associated with a diagnosis of cancer. This is from both the psychological and physical perspective and the impact it has on patients. Key themes emerge from the data about the breast cancer service as it is delivered at present and the expectations and perceived value of breast cancer follow-up. The involvement of the patients as key stakeholders ensured that their voices were heard alongside those of both hospital and primary care staff.
Themes from the questionnaires, focus group and key informant interviews concurred with each other. The need for reassurance that the cancer had been treated and participants were well was very important in breast cancer follow-up. Another important element was the continuity of care and the relationship with the MDT (multidisciplinary team). A good relationship instilled confidence in the patient’s management rather than continual questioning requiring the same clinical information from the patient. Following a diagnosis of cancer and a period of uncertainty, confidence in the team was paramount. The vulnerability of the women was discussed, due to the sexual nature of the breast examination and the fear of recurrence caused women a lot of anxiety. Moreover the importance of the examination to the women was discussed and the importance of consistency in examination technique. Therefore communication between the MDT and the patients about treatment, health education and the opportunity for the women to talk and ask questions helped to reduce anxiety.
All stakeholders discussed a model of shared care but aspects of patient management and resources would need to in place to ensure safe practice. GPs did highlight some disadvantages to hospital based follow-up such as long waits, travel and lack of continuity. There was also dispute between hospital clinicians about clinical expertise and the transfer of care to community services. This was also raised by GPs and an element of developmental work would need to develop in a new model of care. The patients wanted to be seen at hospital but were not averse to being seen in the community setting.
To conclude the study findings concurred with the literature related to reassurance gained from attending follow-up clinics. However, NICE (2002) do not appear to take into account the views of the users and the importance of this element of multifaceted cancer care. As at the time of diagnosis of cancer there is time to make a decision, in follow-up there should be set junctures at which to discuss living and coping mechanisms. It may be at the end of cancer treatment some patients will require more follow-up than others. Follow-up may need to be individualised where some patients are discharged but others require more support thus moving away from the exact same follow-up programme for all as happens now.