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Taking Account of the Patient's Perspective when Examining the Quality of Cancer Care

Principal Investigator: John Z. Ayanian, MD, MPP
Harvard Medical School
Department of Health Care Policy
Boston, MA 02115-5899

What's the problem?

Patient-centeredness is increasingly being recognized as a critical indicator of high-quality health care delivery. Although several definitions of patient-centered care have been proposed in the scientific literature, two attributes are considered central: being responsive to patient needs and incorporating the patient's perspective and experiences in care planning and decision-making.

Optimizing patient experiences with care is especially important in cancer because cancer care is often complex and involves communication with and coordination across providers of multiple specialties and across multiple institutional settings. Unsatisfactory interactions with the health care system pose an additional burden on patients when they are already ill and vulnerable. More importantly, less-than-optimal patient experiences can have a significant negative impact on patients’ health-related quality of life.

Data are needed to describe the experience of people living with cancer and traversing the cancer care continuum and to understand the barriers that impede appropriate care as well as the facilitators that ensure high-quality care. These data are necessary to foster positive change to improve the quality of care. Few studies in the United States, however, have examined patient experiences with care in broadly representative cohorts of patients with cancer.

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How has this research addressed the problem?

Dr. Ayanian, a professor of health care policy and professor of medicine at Harvard Medical School and a professor in health policy and management at the Harvard School of Public Health, has long been interested in the intersection of patients’ characteristics and the quality of care they receive. He has focused in particular on the effects of factors such as race, ethnicity, gender, insurance coverage, and socioeconomic characteristics, on access to care, patient experiences with care, and their health outcomes. He also has extensively studied the impact of physicians’ specialty and organizational characteristics on the quality of care. Since 2001, he has been the Principal Investigator of the Harvard/Northern California research team, one of eight investigative teams in the Cancer Care Outcomes Research and Surveillance (CanCORS) Consortium.

The National Cancer Institute established CanCORS to conduct a population-based study of newly diagnosed lung and colorectal cancer patients in multiple regions of the country who receive care in a variety of health care delivery systems. Lung and colorectal cancers were selected as the targets for CanCORS research because they are the leading causes of cancer mortality in the United States, and few systematic quality of care studies for these cancers have been conducted.

CanCORS’ main aim is to determine how patients, providers, and health care organizations influence treatments and outcomes across the cancer care continuum, from diagnosis to recovery or end of life. The Consortium also evaluates the effects of specific therapies on patient survival, quality of life, and satisfaction with care. Data are collected through a patient survey, a provider survey, review of medical records, a survey of informal caregivers, and linkages with other databases, such as Medicare and the US Census.

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Significance of the research & results

CanCORS is one of the largest population-based evaluations of patient experiences with care ever conducted. The study has demonstrated the feasibility of studying patients’ experience of cancer care across the care continuum, including patient with advanced disease. By prospectively collecting data from large numbers of patients in multiple community-based sites—approximately 10,000 lung and colorectal cancer patients—Dr. Ayanian and his CanCORS colleagues have been able to address questions that are not possible with single-site studies or randomized controlled trials.

In addition, the multiple sources of data used in CanCORS have allowed the study’s investigators a unique opportunity to complement systematic assessments of patient experiences in the health care system with technical measures of quality of care typically available in medical records. The resulting rich mine of data has led to many insights into the impact of care processes on patient outcomes.

In his CanCORS research, Dr. Ayanian and his colleagues have focused on problems with interpersonal aspects of care, examining several key constructs, including physician communication with patients, nursing care, and coordination and responsiveness of care. The results of this research may be an important step toward ameliorating disparities in care. Though experience of problems with interpersonal aspects of care was found to be greatest among non-white and non-English speaking patients, the research findings have the potential to benefit patients of all racial and ethnic backgrounds.

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Recent related publications of interest

Ayanian JZ, Chrischilles EA, Fletcher RH, Fouad MN, Harrington DP, Kahn KL, Kiefe CI, Lipscomb J, Malin JL, Potosky AL, Provenzale DT, Sandler RS, van Ryn M, Wallace RB, Weeks JC, West DW. Understanding cancer treatment and outcomes: the Cancer Care Outcomes Research and Surveillance Consortium. J Clin Oncol 2004 Aug 1;22(15):2992-6. Erratum in: J Clin Oncol. 2004 Dec 15;22(24):5026. [Look up in PubMed]

Ayanian JZ, Zaslavsky AM, Arora NK, Kahn KL, Malin JL, Ganz PA, van Ryn M, Hornbrook MC, Kiefe CI, He Y, Urmie JM, Weeks JC, Harrington DP. Patients' experiences with care for lung cancer and colorectal cancer: findings from the Cancer Care Outcomes Research and Surveillance Consortium. J Clin Oncol 2010 Sep 20;28(27):4154-61. [View Abstract]

Ayanian JZ, Zaslavsky AM, Guadagnoli E, Fuchs CS, Yost KJ, Creech CM, Cress RD, O'Connor LC, West DW, Wright WE. Patients' perceptions of quality of care for colorectal cancer by race, ethnicity, and language. J Clin Oncol 2005 Sep 20;23(27):6576-86. [View Abstract]

Malin JL, Ko C, Ayanian JZ, Harrington D, Nerenz DR, Kahn KL, Ganther-Urmie J, Catalano PJ, Zaslavsky AM, Wallace RB, Guadagnoli E, Arora NK, Roudier MD, Ganz PA. Understanding cancer patients' experience and outcomes: development and pilot study of the Cancer Care Outcomes Research and Surveillance patient survey. Support Care Cancer 2006 Aug;14(8):837-48. [View Abstract]

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Last Modified: 03 Sep 2013