Melanoma incidence continues to rise in Europe, the USA and Australia with mortality rates remaining relatively stable, meaning more patients undergoing surveillance. Treatments may include multiple surgeries, BRAF/MEK inhibitors and immune therapies. Clinical Nurse Specialists (CNS) provide support for melanoma patients and their carers in the UK. The aim of the overall study was to explore the changing experiences and support needs of melanoma patients and their carers throughout the disease pathway. Here we report the specific interactions between healthcare professionals and patients.
The study employed a qualitative methodology using a constructivist grounded theory approach. Theoretical sampling was used to recruit 17 melanoma patients from outpatient clinics within a UK teaching hospital. 11 carers and 11 Healthcare professionals (HCPs) participated with patient agreement. Patients and carers were interviewed in-depth, up to 6 times over 2 years and HCPs were interviewed on 2 occasions. Initial topics were modified as interviews took on an emergent design. Focus groups were conducted at the end of data collection: one with patients and one with CNSs.
Owing to differing job titles used by nurses in the UK, not all patients recognised that there was a nurse available to support them. Patients and carers needed to build a trusting relationship with nurses in order to use them for support with nurse-led clinics providing continuity. Patients, carers and CNSs agreed on important points in the pathway resulting in four key phases: diagnosis and initial treatment, surveillance, metastatic disease and bereavement. Patients and carers did not appear to use the service more for knowing it was there, but it provided reassurance. Stage IV disease had the greatest input, with access to community services.
Developing a trusting relationship with a nurse enabled patients to feel supported. This was facilitated by the continuity provided in nurse-led clinics but differing job titles could create a barrier to patients understanding that there was someone they could contact with concerns or worries. CNSs recognised the key time points where support was most needed.
Clinical trial identification
Legal entity responsible for the study
Sheffield Teaching Hospitals NHS Foundation Trust.
National Institute for Health Research.
S.J. Danson: Employee: NIHR National Speciality Lead for Cancer, Early Phase Trials. All other authors have declared no conflicts of interest.