2 Research recommendations

The Guideline Development Group has made the following recommendations for research, based on its review of evidence, to improve NICE guidance and patient care in the future.

2.1 Age thresholds in cancer

Longitudinal studies should be carried out to identify and quantify factors in adults that are associated with development of specific cancers at a younger age than the norm. They should be designed to inform age thresholds in clinical guidance. The primary outcome should be likelihood ratios and positive predictive values for cancer occurring in younger age groups.

Why this is important

It is recognised that several factors, such as deprivation and comorbidity, may lead to development of cancer at a younger age. People with these factors could be disadvantaged by the use of age thresholds for referral for suspected cancer.

2.2 Primary care testing

Diagnostic accuracy studies of tests accessible to primary care should be carried out for a given cancer in symptomatic people. Priority areas for research should include tests for people with cough, non‑visible haematuria, suspected prostate cancer, suspected pancreatic cancer, suspected cancer in childhood and young people and other suspected rare cancers. Outcomes of interest are the performance characteristics of the test, particularly sensitivity, specificity and positive and negative predictive values.

Why this is important

There is very little information currently available on the diagnostic accuracy of tests available in primary care for people with suspected cancer. These studies will inform clinicians on the choice of investigation for symptomatic patients.

2.3 Cancers insufficiently researched in primary care

Observational studies of symptomatic primary care patients should be used to estimate the positive predictive value of different symptoms for specific cancers. Priority areas for research are those where the evidence base is currently insufficient and should include prostate cancer, pancreatic cancer, cancer in childhood and young people and other rare cancers. Outcomes of interest are positive predictive values and likelihood ratios for cancer.

Why this is important

For several cancer sites, the primary care evidence base on the predictive value of symptoms is thin or non‑existent. Filling this gap should improve future clinical guidance.

2.4 Patient experience

Qualitative studies are needed to assess the key issues in patient experience and patient information needs in the cancer diagnostic pathway, particularly in the interval between first presentation to primary care and first appointment in secondary care. Outcomes of interest are patient satisfaction, quality of life and patient perception of the quality of care and information.

Why this is important

There was very little information on both patient information needs and patient experience throughout the cancer diagnostic pathway. Filling this gap should improve future patient experience.

  • National Institute for Health and Care Excellence (NICE)