Experiences of managing cancer family history in secondary care
Gillian Bowman and Linda Dyer
Introduction to experiences of managing cancer family history in secondary care
This chapter will focus on the management within secondary care of patients with a family history (FH) of breast cancer and colorectal cancer (CRC), drawing on the experience of two nurse-led FH clinics in the southeast of England. The rationale for establishing the clinics, the way the services were delivered and the benefits, challenges and lessons learned will be discussed. The learning objectives for Chapter 39 are:
- ? to be able to discuss the role of the health professional in managing FH in secondary care;
- ? to consider the challenges and benefits of setting up and running a cancer FH clinic in the hospital setting.
Rationale for setting up the clinics
Both clinics were set up in the late 1990s, following publication of a report for the Chief Medical Officer about the organisation of cancer genetics services (DoH, 1998). The clinics aimed to improve consistency of management, triage referrals for screening and genetics assessment and move well patients out of the symptomatic clinics. National risk assessment guidelines were not available at that time so referral pathways and guidelines were developed in consultation with the regional genetics centre (RGC) based on the available evidence. Support and training for the clinical nurse specialists (CNS) running the clinics was provided by the RGC.
Prior to establishing the clinics, patients concerned about their FH were seen in the symptomatic clinic by a surgeon alongside patients undergoing cancer treatment. Screening and genetics referrals were undertaken at the patient’s request or the clinician’s judgment, and although patients diagnosed with cancer were generally asked if they had a FH of the disease, a thorough FH and systematic risk assessment was rarely undertaken. Clinicians were often influenced by patients’ concerns or the reported frequency of screening amongst other family members, leading to a lack of consistency in the organisation of screening. Asymptomatic patients who reported a FH were often followed up on a regular basis from the age at which they were referred (with clinical breast examinations and/mammograms or ultrasound scans or colonoscopies), strengthening dependency on screening. As a consequence, many patients were exposed to unnecessary procedures and overwhelming demand was placed on symptomatic clinics and screening services.