The need to give greater weight to patients’ own assessments of treatment impacts is increasingly accepted in principle. Putting it into practice will require a lot of hard work, developing tools that work for specific conditions and treatments, are easy to use, and command an international consensus. Simon Crompton talks to some of the people who are determined to make it happen.
The answer to the meaning of life, the universe and everything is 42, according to celebrated science fiction writer Douglas Adams. Roger Wilson, founder of Sarcoma UK and one of the most prominent cancer advocates in Europe, says he has found his 42: patient reported outcome measures. He believes that these measuring tools of quality of life could put patient experience at the centre of research, clinical decision making and treatment availability – life, the universe, everything.
Patient reported outcome measures (PROMs) use patients’ own assessments of their quality of life, capturing subjective experience through questionnaires. They have long been used in clinical practice and research to monitor patients during treatment, looking to measure physical symptoms, psychological problems and general quality of life. But their use is patchy, inconsistent and uncoordinated. Wilson – who has advised the UK’s National Cancer Director and was honoured in 2011 for services to healthcare – is on a mission to change that. He wants systematically gathered information about what gives patients a good quality of life to guide everything – research into drug treatments, clinical decision making, health technology assessments, cancer policy.
His vision is about to be spelled out in a far-reaching piece in the journal Research Involvement and Engagement – a rare example of a patient sole-authored paper in the peer-reviewed medical press. Wilson argues that the development of new cancer treatments is guided not by the value they add to patients’ lives but by convoluted surrogate endpoints. Equally, treatment choice is informed by clinician opinion rather than patients’ past experience of what works. Patient quality of life data, he says, must be standardised and gathered on a massive scale, so that whole pathways of care in every disease can be guided by what has actually helped patients live fulfilled lives.
“We need to measure and describe the pathways experienced by patients in terms that they understand,” he says. “This would be done by bringing together quality of life data from a range of clinical and research sources, and aggregating and analysing it, to describe stages in the disease pathway.”
Wilson’s own experiences of cancer over 18 years demonstrate current gaps – and the potential of PROMs to fill them. Since being diagnosed with soft tissue sarcoma in 1999, Wilson, a former producer at the UK broadcaster the BBC, has had ten operations, chemotherapy and radiotherapy. These included a lower leg amputation in 2007. It was his experiences when diagnosed with lung metastases in 2013 that truly convinced him that a change had to come. He was presented with several options: surgery, different types of ablative therapy, chemotherapy and palliative care. But the right choice was far from clear. There was no evidence about outcomes from each option for someone in Wilson’s circumstances, and no quality of life data apart from one palliative care study. All he had to go on was clinical experience and informed opinion.
Read the full article here: http://cancerworld.net/featured/proms-put-patients-at-the-heart-of-research-and-care/