Using a database to promote tailored provision of information and support

Amanda Justice, Myeloma Clinical Nurse Specialist (CNS) at Worthing Hospital, reflects on setting up a patient database, and the benefits it has provided to patients, carers, and colleagues in the myeloma team.

What prompted you to start a database?

When I joined the haematology team as a CNS, one of my first tasks was to identify all the patients with myeloma and MGUS. Many were being seen in general haematology clinics and capturing accurate patient numbers would help structure clinics more effectively. It would also ensure patients had the right consultation time according to diagnosis and point in disease pathway.

I began by pulling the data from patients currently on treatment, added in the patients from clinics, and created an Excel spreadsheet with four tabs:

• Oral treatment
• Patients attending day unit
• Smouldering myeloma/remission
• MGUS

The information captured included:

• Demographics
• Myeloma type
• Diagnosis date
• Previous treatment(s)
• Any significant side effects
• Date of last imaging
• Current treatment plan
• Next review date
• Holistic needs assessment dates

The database does not sit in a shared drive and only I access and use the data.

What impact has the service had on patients, colleagues and the CNS service?

There are various ways the database helps me to support patients. For example, providing tailored information on complications such as bone health for patients with bone disease and fatigue information to all patients on lenalidomide. I have also done an ‘age search’ to send reminders to patients eligible for free prescriptions. The database also helps with planning ahead with information according to where a patient is on their disease pathway, for example, if they are relapsing their eligibility for clinical trials, or if starting fourth line treatment, introducing discussion and information on palliative care.

The database has benefits beyond the CNS service. For example, colleagues find it helpful to know accurate patient numbers when looking at potential research studies. The data has also been used to ensure all patients who stopped bisphosphonates during the pandemic were restarted, if required. It has also helped ensure extended phenotyping is carried out for patients on daratumumab. More generally, the database has increased overall clinic efficiency by facilitating movement of suitable patients to my nurse-led clinic which takes pressure off consultants’ clinic lists. It also assists planning ahead with holidays and adjusting clinics accordingly. In addition, data on the increase in patients on treatment is valuable information for the department as it affects day unit capacity.

Can you offer any advice for CNSs interested in setting up something similar?

Don’t be afraid of Excel – build your database as you go along, according to the needs of the patients in your service. Also beware of capturing data that already sits elsewhere or saying yes to requests from colleagues asking to include data which will take time to input and may not directly benefit your patients.

Amanda Justice
Myeloma Clinical Nurse Specialist
University Hospitals Sussex NHS Foundation Trust