Who is the best person to decide which treatment is best for each pancreatic cancer patient? Their oncologist? Surgeon? Family doctor?
It turns out to be none of the above. Patients are the best people to decide which treatment to undergo. But often they are not armed with the right information to make such momentous decisions.
A review in the European Journal of Surgical Oncology found that there is a lack of information available to pancreatic cancer patients about the symptom trajectory for different treatment approaches and the quality of life they might expect. This was especially true for older patients, who may face different challenges than those diagnosed at a younger age. Older people are more likely to have a non-curative approach and may experience higher treatment-related toxicity, for example.
Treatment decision-making is usually informed by the results of clinical trials; however, older people with pancreatic cancer are underrepresented in clinical trials. The median age across pancreatic cancer clinical trials is 62.7 years, almost 10 years younger than the median age in the pancreatic cancer population, and the results from those trials may not reflect realistic outcomes for older patients.
Patients Informing Patients
One potential remedy is the incorporation of Patient-Reported Outcome Measures (PROMs) into clinical trials and treatment data collection, says study author Peter De Rosa, Policy and Intelligence Manager for Pancreatic Cancer UK (London, United Kingdom). By collecting information from patients about how health care services and interventions have affected their quality of life, symptom severity, and daily functioning, the pancreatic cancer community could get a better, more holistic assessment of treatment. “It is important patients have sufficient information on both survival and quality of life, as the type and extent of this information communicated to patients will influence their treatment decisions,” he explains.
It is also important to align potential treatment impact with individual patient goals. When weighing the benefits and risks of treatment, some cancer patients value quality of life over survival, while others would rather pursue any treatment which might allow them to live longer. Many have difficulty anticipating when to stop active cancer treatment, particularly in advanced pancreatic cancer.
“The patient is best placed to decide what is important to them, and adopting a one-size-fits-all approach leads to risks of overtreating some patients and undertreating others,” De Rosa notes. “Treatment approaches should be aligned with individual patient expectations and goals. To do this, we need more patient-reported outcome data to inform both patients and clinicians around the benefits and harms of each treatment.”
The benefits could go well beyond informing future treatment decisions. The collection of patient-reported data alongside clinical alerts linked to symptom-directed interventions offers an opportunity to provide improved symptom management and tailored support for people with pancreatic cancer, De Rosa says.
For example, fatigue is one of the most common and severe patient-reported symptoms, but is commonly underreported and undertreated. Addressing this frequent and distressing symptom when reported could greatly increase overall patient satisfaction.
The routine collection of and feedback for PROMs also has the potential to identify patients with nutritional and dietary needs earlier and provide targeted information and support, which could help meet the often-unmet nutritional care needs that exist for pancreatic cancer patients. It could also allow patients experiencing psychological symptoms to be identified earlier, and accelerate referrals for psychological interventions.
Although there are limited studies assessing the impact of PROMs for people with pancreatic cancer, one study reported that patient-reported data collection linked to supportive care interventions was able to improve the symptom burden in patients who had undergone pancreatic or periampullary surgery. Six weeks after surgery, the PROM intervention group had lower symptom scores for nausea/vomiting, pain, constipation, pancreatic pain, and flatulence compared to the control group.
In a further study, with a mixed palliative cancer cohort including pancreatic cancer, patient- reported symptom monitoring with real-time feedback to oncologists was found to improve symptoms, enhance communication and coping, and more often provide immediate management for patients with a high symptom load.
Yet another study of patients with advanced solid tumors found that a patient-reported symptom tracking intervention allowed patients to remain on chemotherapy longer (8.2 months vs. 6.3 months) and had significantly longer overall survival (31.2 months vs. 26 months).
De Rosa would like to see PROMs incorporated more regularly in both clinical trials and standard care. “Assessing and delivering outcomes that are important to the patient should be an integral part of health care provision,” he says. “Systematic approaches to the detection and management of symptoms and side effects can improve the patient’s ability to manage their own condition and put a focus on recovery.”