Introduction The diagnosis of carcinoid heart disease (CHD) is often made late and the patients are often deconditioned, with symptoms of fatigue, weight loss and refractory carcinoid symptoms. The challenge is then to improve the patient's condition by an enhanced pathway of prehabilitation and interventions, in order to consider surgical and medical therapies that can improve the patient's quality of life and prognosis. In 2018 due to the complexity of patients and increased referrals to our CHD service, it became unmanageable to look after these patients through the current ad hoc service provision and so we needed to build closer collaborations with our cardiac colleagues. It is recognised that the health care resources to manage CHD are not well understood. The Neuroendocrine Tumour (NET) Clinical Nurse Specialist (CNS) team recognised the unmet need for this complex group of patients and were instrumental in bringing together the wider members of the specialist teams. This culminated in a twice monthly CHD/NET multidisciplinary team meeting (MDTM) and a monthly joint NET/CHD clinic.
Methods Patient information was collected on a prospective database designed and maintained by the CNSs in 2018, in addition to the information on the Trust NET database. This study compared the patient data collected on a standard pathway from 2005, prior to CHD/NET service developments in 2018, to those on the enhanced pathway from December 2018 to present.
Results Results show that 45 patients with CHD were reviewed at NET CHD MDT from December 2018 to July 2021. Nineteen patients went on to have had heart valve replacement and of these four had patent foramen ovale (PFO) closure prior to proceeding to surgery. A number of patients benefitted from clinical review and optimisation in the innovative joint CHD /NET clinic.
Conclusions Establishing a dedicated CHD MDT and joint CHD/NET clinic was fundamental in driving this service forward to improve efficiencies in the CHD service and overall patient care. There is growing evidence that the CNS role makes a difference to patient care, however the full value is not always recognised. Further analysis could lead the way for future developments and improvements in the service.