Validity of cancer registry data for measuring the quality of breast cancer care.

BACKGROUND Various groups have called for a national system to monitor the quality of cancer care. The validity of cancer registry data for quality of cancer care has not been well studied. We investigated the validity of such information in the California Cancer Registry. METHODS We compared registry data associated with care with data abstracted from the medical records of patients diagnosed with breast cancer. We also calculated a quality score for each subject by determining the proportion of four evidence-based quality indicators that were met and then compared overall quality scores obtained from registry and medical record data. All statistical tests were two-sided. RESULTS Records of 304 patients were studied. Compared with the medical record data gold standard, the accuracy of registry data was higher for hospital-based services (sensitivity = 95.0% for mastectomy, 94.9% for lumpectomy, and 95.9% for lymph node dissection) than for ambulatory services (sensitivity = 9.8% for biopsy, 72.2% for radiation therapy, 55.6% for chemotherapy, and 36.2% for hormone therapy). On average, quality scores calculated from registry data were 11 percentage points (95% confidence interval [CI] = 9 to 13 percentage points, P<.001) lower than those calculated from medical record data. Quality scores calculated from registry data were 5 percentage points (95% CI = 3 to 7 percentage points) lower for patients with stage I breast cancer, 16 percentage points (95% CI = 12 to 20 percentage points) lower for patients with stage II breast cancer, and 20 percentage points (95% CI = 8 to 32 percentage points) lower for patients with stage III breast cancer than were corresponding scores calculated from medical record data (all P<.001). The greater difference in quality scores for stage II and III patients revealed that disease severity and setting of care affected the validity of registry data. CONCLUSIONS Cancer registry data for quality measurement may not be valid for all care settings, but registries could provide the infrastructure for collecting data on the quality of cancer care. We urge that funding be increased to augment data collection by cancer registries.

[1]  J. Samet,et al.  Geographic variation in the treatment of localized breast cancer. , 1992, The New England journal of medicine.

[2]  S. Scott,et al.  Information Gained From Linking SEER Cancer Registry Data to State-Level Hospital Discharge Abstracts , 2000, Medical care.

[3]  A. Skolnick.  A FACCT-filled agenda for public information. Foundation for Accountability. , 1997, JAMA.

[4]  H. Howe,et al.  Effects of physician outreach programs on rural-urban differences in breast cancer management. , 1997, The Journal of rural health : official journal of the American Rural Health Association and the National Rural Health Care Association.

[5]  Robert H. Brook,et al.  Part 2: Measuring Quality of Care , 1996 .

[6]  D. Winchester,et al.  Patterns of breast cancer care in the elderly , 1996, Cancer.

[7]  A. Monheit,et al.  Race/ethnicity and health insurance status: 1987 and 1996. , 2000, Medical care research and review : MCRR.

[8]  Joseph V. Simone,et al.  Ensuring Quality Cancer Care , 1999 .

[9]  R. Winn,et al.  Breast Cancer Prevention Strategies , 1997 .

[10]  Joseph V. Simone,et al.  Enhancing Data Systems to Improve the Quality of Cancer Care , 2000 .

[11]  R. G. Hoffman,et al.  Minimal increase in use of breast-conserving surgery from 1986 to 1990. , 1996, Medical care.

[12]  K. Kahn,et al.  Developing a Reliable, Valid, and Feasible Plan for Quality-of-Care Measurement for Cancer: How Should We Measure? , 2002, Medical care.

[13]  Skolnick Aa.  A FACCT-filled agenda for public information. Foundation for Accountability. , 1997 .

[14]  C. Compton,et al.  AJCC Cancer Staging Manual , 2002, Springer New York.

[15]  J. Kaprio,et al.  Physical activity and osteoporotic hip fracture risk in men. , 2000, Archives of internal medicine.

[16]  O. M. Jensen,et al.  Cancer Registration: Principles and Methods , 1991 .

[17]  C. Klabunde,et al.  Stage at diagnosis and treatment patterns among older women with breast cancer: an HMO and fee-for-service comparison. , 1999, JAMA.

[18]  E. McGlynn,et al.  Part 2: Measuring Quality of Care , 1996 .

[19]  J. Gurwitz,et al.  Age-related patterns of care: evidence against ageism in the treatment of early-stage breast cancer. , 1997, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[20]  J F Wilson,et al.  Factors predicting the use of breast-conserving therapy in stage I and II breast carcinoma. , 2001, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[21]  M. Chassin,et al.  Determining the Quality of Breast Cancer Care: Do Tumor Registries Measure Up? , 2000, Annals of Internal Medicine.

[22]  E. White,et al.  Breast conservation therapy in the United States following the 1990 National Institutes of Health Consensus Development Conference on the treatment of patients with early stage invasive breast carcinoma , 1999, Cancer.

[23]  V. Schoenbach,et al.  The potential and limitations of data from population-based state cancer registries. , 2000, American journal of public health.

[24]  V. Schoenbach,et al.  The Potential and Limitations of Data From Population-Based , 2000 .

[25]  B. Hankey,et al.  Completeness of hospital cancer case reporting from the SEER Program of the National Cancer Institute. , 1995, Cancer.

[26]  R. Winn,et al.  Baseline institutional compliance with NCCN guidelines: non-small-cell lung cancer. , 1997, Oncology.

[27]  Young Jl.  The hospital-based cancer registry. , 1991 .

[28]  J. Stanford,et al.  Prostate cancer practice patterns and quality of life: the Prostate Cancer Outcomes Study. , 1999, Journal of the National Cancer Institute.

[29]  R. Gelber,et al.  Meeting highlights: international consensus panel on the treatment of primary breast cancer. , 2002, Journal of the National Cancer Institute.

[30]  L. Kessler,et al.  Potential for Cancer Related Health Services Research Using a Linked Medicare‐Tumor Registry Database , 1993, Medical care.

[31]  L. Shi.  Type of health insurance and the quality of primary care experience. , 2000, American journal of public health.

[32]  David K. Wyant,et al.  Linked insurance-tumor registry database for health services research. , 1999, Medical care.

[33]  S. Edge,et al.  Treatment of early-stage breast cancer. , 1999, Current problems in cancer.

[34]  R H Brook,et al.  Quality of health care. Part 2: measuring quality of care. , 1997, The New England journal of medicine.

[35]  A. Skolnick.  A FACCT-Filled Agenda for Public Information , 1997 .

[36]  W. W. Young,et al.  Dissemination of clinical results. Mastectomy versus lumpectomy and radiation therapy. , 1996, Medical care.

[37]  J. Goodwin,et al.  Patterns of use of chemotherapy for breast cancer in older women: findings from Medicare claims data. , 2001, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[38]  Avner Halevy,et al.  Measuring and reducing the national cost of non-quality , 2000 .

[39]  P. Walsh.  Follow-up prostate cancer treatments after radical prostatectomy: a population-based study. , 1996, The Journal of urology.

[40]  A. Kaluzny,et al.  The community clinical oncology program: its effect on clinical practice. , 1995, The Joint Commission journal on quality improvement.

[41]  Georgios Giakatis,et al.  Hidden quality costs and the distinction between quality cost and quality loss , 2001 .

[42]  I. Olivotto,et al.  Patterns of initial management of node-negative breast cancer in two Canadian provinces. British Columbia/Ontario Working Group. , 1997, CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne.

[43]  I. Olivotto,et al.  The association between population-based treatment guidelines and adjuvant therapy for node-negative breast cancer. British Columbia/Ontario Working Group. , 1997, British Journal of Cancer.

[44]  L. Kessler,et al.  Factors associated with surgical and radiation therapy for early stage breast cancer in older women. , 1996, Journal of the National Cancer Institute.

[45]  D. McClish,et al.  Ability of Medicare claims data and cancer registries to identify cancer cases and treatment. , 1997, American journal of epidemiology.

[46]  M. Brown,et al.  The national economic burden of cancer: an update. , 1990, Journal of the National Cancer Institute.

[47]  B. Hillner,et al.  Measuring standards of care for early breast cancer in an insured population. , 1997, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[48]  C. Mackenzie,et al.  A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. , 1987, Journal of chronic diseases.

[49]  E. White,et al.  Underutilization of breast-conserving surgery and radiation therapy among women with stage I or II breast cancer , 1991 .

[50]  M. Knobf.  Early-stage breast cancer: the options. , 1990, The American journal of nursing.

[51]  W. Barlow,et al.  Breast cancer survival and treatment in health maintenance organization and fee-for-service settings. , 1997, Journal of the National Cancer Institute.