New systems for cancer patient self-reporting: improving care and quality of life

Academics: Dr P. Wright, Professor D. Forman, Professor J. Brown, Professor G. Velikova, Dr D. Stark and Professor P. Selby, Faculty of Medicine and Health

New techniques for cancer patients to self-assess their symptoms and quality of life, developed by University of Leeds researchers, have influenced clinical guidelines and significantly improved patient welfare and health. 

Following a diagnosis and treatment for cancer, patients face an uncertain future with many experiencing physical, emotional and social consequences which impact on their everyday lives. Previously clinicians focused on survival, rather than quality of life.  Leeds researchers set out to determine whether routine patient-centred assessment, using patient reported outcome measures (PROMs) of clinical symptoms, psychosocial issues and quality of life could enhance the overall well-being of patients and their satisfaction with care. 

Improving patient well-being and clinical outcomes

Development of new technologies

New innovations must be user friendly, useful and easily integrated into clinical practice. The team developed electronic methods for collecting PROMs. This began with a ‘stand-alone’ computer touchscreen in the mid-1990s and was followed by a system integrated with the electronic patient record at the Leeds Cancer Centre and more recently a secure web-based system in which patients complete PROMs from home.  Studies demonstrated that not only was it reliable, feasible and acceptable to patients and clinicians to use such systems but also, by providing regular patient self-reported quality of life information to clinicians, doctor patient communication was  improved, better symptom control was achieved and patient distress was reduced without lengthening the clinical consultation.

Assessing the social impact of cancer

Assessment of the social impacts of cancer had been somewhat neglected in the past. Therefore, having established the new electronic technology for collecting PROMs from patients, the team went on to develop and evaluate a specifically designed questionnaire for assessing these issues, the Social Difficulties Inventory (SDI-21).  The SDI-21 is now being used in clinical practice, for example in Canada it forms part of an electronic Distress Assessment and Response Tool (DART), which has been shown to enhance patient well-being and improve clinical outcomes (chemotherapy completion rate increased 50% to 85%). The SDI-21 has also been used as part of the Department of Health national PROMs survey of 50,000 cancer patients.

The results from these studies influenced the Health and Social Care Act 2012’s endorsement of the use of PROMs to put patients at the centre of the NHS and significantly contributed to clinical practice guidelines, meaning electronic self-reporting tools are being widely adopted.

Health services must become more patient centred. We urgently require methods to measure this aspect of care. Leeds researchers have provided us, not only with technologies for this purpose but also evaluated their measurements in a randomised controlled trial. This was very influential in the incorporation of Patient Reported Outcome Measures as a central theme within the NHS.

Sir Michael Richards, National Cancer Director (1999-2013)
Funders: NHS, Imperial Cancer Research Fund, Cancer Research UK, Macmillan Cancer Support and National Institute for Health Research