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July 2017 VOL 8, NO 7
Advancements in Quality Care: Incorporating the Patient Voice
To improve the quality of cancer care, the voices of cancer patients should be integrated into care delivery and evaluation, according to Neeraj Arora, PhD. “Patient-centeredness needs to be more than just an add-on to clinical practice,” he said. “When diagnosed with cancer, patients are not only looking to maximize their chances of survival; they are looking for support to guide them through this major ordeal.”
At the 2017 American Society of Clinical Oncology Quality Care Symposium, Dr Arora discussed the gaps in the provision of patient-centered healthcare in the United States, as well as future implications for the field of oncology.
What Do Patient Voices Tell Us?
After a cancer diagnosis, ongoing patient needs include informational, decision-making, and emotional support. Patients also require instrumental support to coordinate their care and guide them through the healthcare system, appraisal support to help them deal with the uncertainties that lie ahead, and self-management support to give them the tools to take care of health issues when not in the presence of an oncology provider.
“How well we do as a healthcare system at meeting all of these needs of cancer patients and their families is as important an indicator of quality care as providing clinically effective medical interventions,” said Dr Arora, Associate Director in the Healthcare Delivery and Disparities Research program at the Patient-Centered Outcomes Research Institute in Washington, DC. “But this can only happen if we really listen to patients’ voices in our quality care assessments.” The Institute of Medicine’s 2013 “Cancer Crisis” report echoed his sentiment. The report stated that “the most important goal of a high-quality cancer care delivery system is meeting the needs of patients and their families,” and recommended the development of a national quality-reporting program for cancer care as part of a learning healthcare system.
Are We Missing the Mark?
The 2013 Health Information National Trends Survey conducted by the National Cancer Institute (NCI) found that about 14% of respondents never or only sometimes had the opportunity to ask questions of their healthcare providers, translating to 1 of every 7 patients receiving insufficient information. About 23%, or 1 of 4 patients, said the healthcare system did not acknowledge their emotional needs, and 18%, or approximately 1 of 5, reported a lack of decision support from their healthcare team. According to Dr Arora, these data highlight significant opportunities for improvement. “These percentages need to be at 5% or less so that we’re at least 95% confident that we are delivering high-quality patient-centered care,” he said.
The Patient Reported Outcomes Symptom and Side-Effects Study, led by the American Cancer Society, NCI, and the Commission on Cancer, collected patient data on symptom experiences from about 2500 patients with breast or colon cancer 4 to 12 months after diagnosis. Patients were asked whether they received advice from their providers about pain, fatigue, and emotional distress, and whether they received help for these symptoms if needed. Most patients (70%) said they had a discussion with their care team about pain, but only about half (55%) said there was a discussion about emotional distress, and less than 50% of patients reported receiving help for fatigue and emotional distress. “This study underscores the importance of patient-reported experiences as part of the overall package of listening to patients’ voices,” said Dr Arora.
Refocusing on Patient-Centered Oncology
The National Committee for Quality Assurance is currently evaluating the impact of its patient-centered oncology model on the quality of cancer care and healthcare utilization in 5 diverse pilot practices, using patient experience and Quality Oncology Practice Initiative measures as quality benchmarks. “With this study, we’ll essentially have proof of principle of the value added of patient experiences,” he said. “This will provide a much more comprehensive assessment and picture of the quality of care patients are receiving.” Results from the study are expected next year.
Demonstrating further forward momentum in patient-centered care is the Consumer Assessment of Healthcare Providers and Systems Cancer Care Survey, which assessed patient experience with cancer treatment across all outpatient and inpatient settings in the fields of radiation oncology, medical oncology, and cancer surgery.
According to Dr Arora, healthcare systems should provide cancer patients with ongoing support during and between encounters and should ensure the integration of patient-centered measures with clinical quality indicators as part of rapid learning health systems.
“On the road to delivering high-quality cancer care, always walk in the shoes of the patient,” he said. “Because tomorrow those shoes might be our own.”