Advancements in Quality Care: Incorporating the Patient Voice

Meg Barbor, MPH

May 2017, Vol 7, No 5 - Quality Care


Orlando, FL—To improve the quality of cancer care, the voices of patients with cancer should be integrated into care delivery and evaluation, said Neeraj K. Arora, PhD, Associate Director, Healthcare Delivery and Disparities Research, Patient-Centered Outcomes Research Institute, Washington, DC, at the 2017 ASCO Quality Care Symposium.

“Patient-centeredness needs to be more than just an add-on to clinical practice,” said Dr Arora. “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,” he added.

Dr Arora discussed the gaps in the provision of patient-centered healthcare in the United States, as well as future implications in oncology.

Listening to Patients’ Needs

After a cancer diagnosis, patients need correct information, as well as 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 handle health issues when they are not in the presence of an oncology provider.

“How well we do as a healthcare system at meeting all of these needs of patients with cancer and their families is as important an indicator of quality care as providing clinically effective medical interventions,” said Dr Arora. “But this can only happen if we really listen to patients’ voices in our quality care assessments,” he added.

Dr Arora’s sentiment echoes the Institute of Medicine 2013 report, Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. According to Dr Arora, the report states that “the most important goal of a high-quality cancer care delivery system is meeting the needs of patients and their families.”

Are We Missing the Mark?

The 2013 Health Information National Trends Survey conducted by the National Cancer Institute (NCI) showed that approximately 14% of respondents never or only sometimes had the opportunity to ask questions of their healthcare providers, translating to 1 in 7 patients receiving insufficient information.

Approximately 23% of respondents said that the healthcare system did not acknowledge their emotional needs, and 18% reported a lack of decision support from their healthcare team. These data highlight significant opportunities for improvement, according to Dr Arora.

“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 Symptoms and Side-Effects Study, led by the American Cancer Society, NCI, and the Commission on Cancer, collected patient data on symptom experiences from approximately 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.

Overall, 70% of patients reported that they had a discussion with their care team about pain, but only 55% of patients had discussions about emotional distress, and <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 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,” said Dr Arora. “This will provide a much more comprehensive assessment and picture of the quality of care patients are receiving.” The results of this study are expected next year.

Patients with cancer need ongoing support during and between encounters; providers should ensure the integration of patient-centered measures with clinical quality indicators as part of rapid learning health systems, said Dr Arora.

“On the road to delivering high-quality cancer care, always walk in the shoes of the patient. Because tomorrow those shoes may be our own,” he said.