What your patient needs to know about a non-specific symptom pathway referral for suspected cancer

Non-specific symptom (NSS) pathways were implemented in the UK in 2017 to address the needs of patients experiencing symptoms such as weight loss, fatigue, or GP 'gut feeling'.

To explore patients' experiences of NSS pathways, and their potential support needs in terms of understanding and navigating these pathways.

This study employed ethnographic methods across four NHS trusts in England, including interviews with 28 patients and 28 professionals, patient shadowing, and clinical care observations, to examine NSS pathways for cancer diagnosis. Analysis focused on patient communication and understanding of care.

Patients found it hard to understand why they were referred. Only a minority of patients appreciated that multiple organs were being investigated for cancer. Progressing through the pathway was also difficult to understand, particularly around who was making decisions and what would happen next. Investigations often resulted in incidental findings. Patients whose persistent symptoms were not explained were often unsure what to do following discharge.

The findings resulted in recommended messages for GPs to support patients on referral to NSS pathways, including the nature of the pathway, the team that will be responsible for their care, the multiple organ systems that will potentially be investigated, and what will happen if they don't find a cancer. Without this support, patients' difficulties in comprehending previous investigations and findings could result in delays, overtesting, or inadequately targeted investigations, hindering the effective use of their medical history.