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When we think of personalised medicine, we generally think of innovative new targeted treatments – selecting therapies for individual patients based on clinical data such as a specific mutation in their DNA.
Grouping patients in this way is vital to ensure that treatments are tailored to specific types of tumours, improving the chance that they will be effective.
However, there is more to personalised medicine than tumour biology.
Clinicians are increasingly seeing the value in patient-reported outcome measures –information coming directly from patients about how they feel in relation to a health condition and its treatment, without interpretation by healthcare professionals or anyone else.
This could include information about their levels of tiredness or appetite, or their ability to fulfil everyday tasks such as going to work. This information is vital for understanding a patient’s health-related quality of life, a measure that is gaining increasing attention in understanding the benefits of treatment.
In a letter submitted to the Journal of Clinical Oncology, researchers from The Institute of Cancer Research, London and The Royal Marsden NHS Foundation Trust, and influential sarcoma patient advocate Roger Wilson, highlighted the lack of patient reported outcome measures cited in many sarcoma studies and made the case for their inclusion in future research.
The importance of listening to patients
The ICR is committed to improving the quality of patients’ lives and has published research into the effect of new therapies beyond their survival benefit.
As part of the PALETTE trial – one of the few sarcoma trials to report health-related quality of life as an exploratory endpoint – an international group of researchers from the European Organisation for Research and Treatement of Cancer (EORTC) showed overall clinical benefit of the drug pazopanib by demonstrating not only that it slowed the progression of the disease but also led to no relevant decrease in overall quality of life.
While health-related quality of life is an important outcome in itself, monitoring it more closely in patients has also been shown to have a positive effect on patient survival.
In one study of patients with metastatic cancer, routine monitoring of patient reported outcome measures with an immediate response to adverse events led to a five-month increase in overall survival – a greater survival benefit than most new FDA-approved drugs for these cancers in 2016!
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Challenges in collecting patient reported outcome measures
The authors make it clear that assessing new treatments purely on their survival benefit is an inadequate approach to their development. But assessing health-related quality of life comes with its own complications.
Cancers are a diverse and varied group of diseases, each with its own difficulties with respect to treatment and the specific challenges faced by patients. Designing a single tool to measure health-related quality of life across all patients is challenging.
While it is possible to develop tools to assess issues common to all cancer patients, such as fatigue, traditional generic questionnaires have lacked the scope and sensitivity to capture many disease-specific issues such as neurocognitive issues after cranial radiotherapy and phantom pain after an amputation.
The authors raise this as a particularly big issue for sarcomas – a group of rare cancers with more than 70 subtypes that vary wildly in their presentation and biology.
There are currently disease-specific tools for measuring health-related quality of life in some more common tumour types, but creating a tool for such a rare and varied group of cancers as sarcomas presents a significant challenge.
We need to develop more flexible approaches to assessing patient reported outcomes in these varied patient populations – creating a system that covers the full spectrum of individual cancers while remaining sufficiently standardised to make meaningful comparisons.
Advances in genomics and our understanding of tumour biology have allowed us to stratify patients into increasingly specific groups – allowing us to select the treatments most likely to be effective against their cancer.
The next step in personalised medicine will be to listen to patients and tailor treatment to their individual needs. Integrating health-related quality of life assessments into clinical trials and practice will give patients more control over their treatment – empowering them to make choices that improve their outcomes.
By integrating the patient voice into research and treatment in this way, we can work to create truly personalised medicine – treating the patient instead of their disease.
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