Using a mobile application to empower neuroendocrine cancer patients
Neuroendocrine cancers are relatively rare and occur in around 7 per 100,000 people per year. Some are slow growing and others can progress rapidly.
It is estimated there are in excess of 30,000 UK patients with this type of cancer. Due to its relatively low incidence and complexity, care is primarily focussed in centres with a specialist interest in managing these cancers.
There is a national charity called the Neuroendocrine Cancer United Kingdom (NCUK) that supports patients through their journey. As the condition’s incidence is relatively low, patient information and clinical knowledge is sparse. Consequently patient and clinical education is a priority for both the patient charity and professional UK and Ireland Neuroendocrine Tumour Society (UKINETS).
The neuroendocrine tumour centre at King’s College Hospital (KCH) serves a population of around 4 million people over a large geographic area.
Travelling for appointments can be burdensome to patients and communicating with patients through telephone-only access can be difficult and time consuming for both patients and care providers.
Individuals seeking further information about their diagnosis often find there is little patient-friendly information for them in the public domain.
To develop a system that would permit remote consultations with patients, to enhance patient access to specialist care from a wide geographic area, and reduce the time patients spend travelling to hospital.
To enable patients to report their own outcomes and symptoms.
To provide patients with information about their condition.
Solution and impact
A mobile application was created by a collaborative effort between NCUK, UKINETS, KCH and Ampersand health.
To assess its effectiveness, a large multi-centre clinical trial was set up to encourage hospitals across the UK to use the mobile app as a novel tool for patients and clinicians.
The content development was guided by patients and clinicians, permitting them to record symptoms, patient-reported outcomes, and quality of life scores.
To help support patients with education and awareness, the app contains literature set out in lay terms to help people understand their condition.
The app also enables the patient to access the clinical team by email or phone and can support video consultations, meaning it can reduce the need for face-to-face consultations for stable patients.
The patients’ reported symptoms and quality of life scores are sent to the clinical team to enable them to monitor if patients are developing symptoms of psychological distress, or other health issues that require addressing.
When these reports are received, the team can contact patients if there are any alarming findings so that they can link them in to the relevant support services.
At KCH a young patient with a new diagnosis of cancer was finding it difficult to cope and had developed symptoms of psychological distress which was identified through a questionnaire completed on the app. The clinical team were able to contact the patient to assess her safety and offer urgent psychological support.
- This is an app and the data is stored on a cloud-based service
- The app provides patients with access to educational resources and information about their condition
- It can enable patients to download their medical history and record medications, operations and oncology treatment
- It enables email communication with the clinical team
- Daily symptoms recorder
- Quality of life assessments
- Enables video consultations and other live feeds
- Patients can communicate with their clinical team using the app
The app is for use at home by patients.
Key learning points
It was important to engage patient focus groups when developing and piloting the app, this enabled the creation of a more user-friendly interface.
“The development of this app has been a true collaboration between patients and clinical teams. It has the potential to empower patients to develop a better understanding of their condition and also communicate with their clinical team. Furthermore, we can collect patient outcomes and symptoms to help improve patient care.”
Dr Raj Srirajaskanthan, consultant gastroenterologist, Kings College Hospital
Find out more
Dr Rajaventhan Srirajaskanthan, consultant in gastroenterology and neuroendocrine tumours, King’s College Hospital NHS Foundation Trust
The Ampersand health team
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