THE IMPORTANCE OF COMORBIDITY DATA TO CANCER STATISTICS AND ROUTINE COLLECTION BY CANCER REGISTRARS COPYRIGHT NOTICE

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THE IMPORTANCE OF COMORBIDITY DATA TO CANCER STATISTICS AND ROUTINE COLLECTION BY CANCER REGISTRARS COPYRIGHT NOTICE Washington University grants permission to use and reproduce the The Importance of Comorbidity Data to Cancer Statistics and Routine Collection by Cancer Registrars as it appears in the PDF available here without modification or editing of any kind solely for end user use in investigating rhinosinusitis in clinical care or research (the "Purpose"). For the avoidance of doubt, the Purpose does not include the (i) sale, distribution or transfer of the The Importance of Comorbidity Data to Cancer Statistics and Routine Collection by Cancer Registrars or copies thereof for any consideration or commercial value; (ii) the creation of any derivative works, including translations; and/or (iii) use of the The Importance of Comorbidity Data to Cancer Statistics and Routine Collection by Cancer Registrars as a marketing tool for the sale of any drug. All copies of the The Importance of Comorbidity Data to Cancer Statistics and Routine Collection by Cancer Registrars shall include the following notice: "All rights reserved. Copyright 2000. Washington University in St. Louis, Missouri." Please contact Jay F. Piccirillo (314-362-8641) for use of the The Importance of Comorbidity Data to Cancer Statistics and Routine Collection by Cancer Registrars for any other intended purpose. "All rights reserved. Copyright 2000. Washington University in St. Louis, Missouri."

The Importance of Comorbidity Data to Cancer Statistics and Routine Collection by Cancer Registrars NCRA 26th Annual Educational Conference Albuquerque, New Mexico May 11, 2000 Jay F. Piccirillo, MD, FACS Washington University School of Medicine St. Louis, Missouri

Acknowledgement This research was supported through a grant from the National Cancer Institute Grant number R25 CA 68304

Introduction Patients with cancer often have other diseases, illnesses, or conditions in addition to their index cancer These other conditions are generally referred to as comorbidities Although not a feature of the cancer itself, comorbidity is an important attribute of the patient Direct impact on the care of patients, cancer statistics, and the assessment of quality of care

Comorbidity Impact on Therapy The use of preferred therapy might be contraindicated due to the presence of comorbid ailments The comorbid ailment(s) may render an overall prognosis so poor for the patient that an otherwise desirable treatment for the index cancer may be denied A particular type of comorbid ailment(s) may affect the patient's ability to tolerate a particular type of therapy

Prostate Cancer Example Desch et al studied treatment recommendations for local or regional prostate cancer As comorbidity increased, the proportion of men receiving no treatment rose correspondingly Fewer than 30% of men with the most significant level of comorbidity received surgery, radiation therapy, or combinations of aggressive therapy as compared with almost 55% of men who had no comorbid ailments J Clin Epidemiol 1996; 34:152-162.

Advanced Stage Head and Neck Cancer Example Severe Comorbidity Initial Treatment Radiation Therapy Only Absent 84/311 (27%) Present 23/45 (51%) Total 107/356 (30%) Odds Ratio (95% CI) 1.0 2.82 (1.50-5.29)

Quality of Care Example Greenfield et al studied differences in mortality rates for 969 patients with incident cases of breast, colorectal, and prostate cancers across seven hospitals in southern California Of the seven hospitals, the three with the highest mortality had been pinpointed by the Los Angeles Times as high mortality outliers JAMA 1988; 260:2253-2255

The percentage of patients with severe comorbidity scores ranged from 9% to 18% across the seven hospitals (p<0.01) The rankings of hospitals varied depending on whether one adjusted for age, comorbidity level, or cancer stage

Impact of Comorbidity on Prognosis In many cancers, comorbidity prognostically more important than tumor size or TNM stage Particularly important for slow growing cancers and cancers which affect older people Comorbidity can create significant prognostic differences in patients with the same morphologic and histologic manifestations of the index disease

Proportion Surviving 1.0 0.9 0.8 0.7 0.6 0.5 0.4 0.3 0.2 0.1 0.0 Overall Survival N = 3378 0 5 10 15 20 25 30 35 40 45 Survival Duration (Months)

Proportion Surviving 1.0 0.9 0.8 0.7 0.6 0.5 0.4 0.3 0.2 0.1 0.0 Impact of Comorbidity on Survival N = 3378 0 5 10 15 20 25 30 35 40 45 Survival Duration (Months) None Mild Moderate Severe Log Rank = 186.0, p < 0.001

Proportion Surviving 1.0 0.9 0.8 0.7 0.6 0.5 0.4 0.3 0.2 0.1 0.0 Prostate Cancer N = 1687 None Mild Moderate Severe Log Rank = 55.2, p < 0.001 0 5 10 15 20 25 30 35 40 Survival Duration (Months)

Proportion Surviving 1.0 0.9 0.8 0.7 0.6 0.5 0.4 0.3 0.2 0.1 0.0 Breast Cancer N = 665 None Mild Moderate Severe Log Rank = 18.2, p < 0.0004 0 5 10 15 20 25 30 35 40 Survival Duration (Months)

Proportion Surviving 1.0 0.9 0.8 0.7 0.6 0.5 0.4 0.3 0.2 0.1 0.0 Colorectal Cancer N = 469 Moderate Log Rank = 12.3, p < 0.004 Mild None Severe 0 5 10 15 20 25 30 35 40 Survival Duration (Months)

Proportion Surviving 1.0 0.9 0.8 0.7 0.6 0.5 0.4 0.3 0.2 0.1 0.0 Lung Cancer N = 984 None Log Rank = 0.87, p < 0.83 Moderate Mild 0 5 10 15 20 25 30 35 40 Survival Duration (Months) Severe

Adult Comorbidity Evaluation-27 27-item comorbidity index for patients with cancer Developed through modification of the Kaplan-Feinstein Comorbidity Index (KFI) Modifications were made through discussions with clinical experts and a review of the literature Validated in study of 190 cancer patients treated at Barnes-Jewish Hospital

Adult Comorbidity Evaluation-27 Identify the important medical comorbidities and grade severity using the index. Overall Comorbidity Score is defined according to the highest ranked single ailment, except in the case where two or more Grade 2 ailments occur in different organ systems. In this situation, the overall comorbidity score should be designated Grade 3. Cogent comorbid ailment Grade 3 Severe Decompensation Grade 2 Moderate Decompensation Grade 1 Mild Decompensation Cardiovascular System Myocardial Infarct MI 6 months MI > 6 months ago Old MI by ECG only, age undetermined Angina / Coronary Artery Disease Congestive Heart Failure (CHF) Unstable angina Hospitalized for CHF within past 6 months Ejection fraction < 20% Chronic exertional angina Recent ( 6 months) Coronary Artery Bypass Graft (CABG) or Percutaneous Transluminal Coronary Angioplasty (PTCA) Recent ( 6 months) coronary stent Hospitalized for CHF >6 months prior CHF with dyspnea which limits activities Arrhythmias Ventricular arrhythmia 6 months Ventricular arrhythmia > 6 months ago Chronic atrial fibrillation or flutter Pacemaker Hypertension Venous Disease Peripheral Arterial Disease DBP>130 mm Hg Severe malignant papilledema or other eye changes Encephalopathy Recent PE ( 6 mos.) Use of venous filter for PE s Bypass or amputation for gangrene or arterial insufficiency < 6 months ago Untreated thoracic or abdominal aneurysm (>6 cm) DBP 115-129 mm Hg Secondary cardiovascular symptoms: vertigo, epistaxis, headaches DVT controlled with Coumadin or heparin Old PE > 6 months Bypass or amputation for gangrene or arterial insufficiency > 6 months Chronic insufficiency ECG or stress test evidence or catheterization evidence of coronary disease without symptoms Angina pectoris not requiring hospitalization CABG or PTCA (>6 mos.) Coronary stent (>6 mos.) CHF with dyspnea which has responded to treatment Exertional dyspnea Paroxysmal Nocturnal Dyspnea (PND) Sick Sinus Syndrome DBP 90-114 mm Hg DBP <90 mm Hg while taking antihypertensive medications Old DVT no longer treated with Coumadin or Heparin Intermittent claudication Untreated thoracic or abdominal aneurysm (< 6 cm) s/p abdominal or thoracic aortic aneurysm repair

Example Congestive Heart Failure Mild Exertional or paroxysmal dyspnea which has responded to treatment Moderate Hospitalized more than six months ago Severe Hospitalized within last 6 months or ejection fraction < 20%

Overall Comorbidity Score Highest ranked single ailment In cases where two or more Moderate ailments occur in different organ systems, the Overall Comorbidity Score should be designated as Severe

Example CONDITION Myocardial Infarct more than 6 months ago DBP 90-114 mm Hg History of alcohol abuse, but not presently drinking Overall Comorbidity Score DECOMPENSATION Moderate Mild Mild Moderate

Example CONDITION Chronic exertional angina Major depression controlled with medication Diabetes requiring insulin Overall Comorbidity Score DECOMPENSATION Moderate Mild Moderate Severe

Let's Try Coding Comorbidity!

Scenario #1 Condition Decompensation Overall Comorbidity Score

Scenario #1 Condition Hypertension controlled with medication Decompensation Insulin Dependent Diabetes poorly controlled Bipolar Disorder on medication Overall Comorbidity Score

Scenario #1 Condition Hypertension controlled with medication Insulin Dependent Diabetes poorly controlled Bipolar Disorder on medication Decompensation Mild Moderate Mild Overall Comorbidity Score

Scenario #1 Condition Hypertension controlled with medication Insulin Dependent Diabetes poorly controlled Bipolar Disorder on medication Overall Comorbidity Score Decompensation Mild Moderate Mild Moderate

Scenario #2 Condition Decompensation Overall Comorbidity Score

Scenario #2 Condition Ulcers requiring surgery Decompensation Mild Chronic Obstructive Pulmonary Disease Active alcohol abuse Overall Comorbidity Score

Scenario #2 Condition Ulcers requiring surgery Decompensation Moderate Mild Chronic Obstructive Pulmonary Disease Active alcohol abuse Mild Moderate Overall Comorbidity Score

Scenario #2 Condition Ulcers requiring surgery Decompensation Moderate Mild Chronic Obstructive Pulmonary Disease Active alcohol abuse Overall Comorbidity Score Mild Moderate Severe

Comorbidity Education Program To demonstrate that the teaching program has broad generalizability to cancer registrars at five different oncology data centers across the United States (i.e., small, rural, community and large, urban centers) The intended outcome of this project is the demonstration of the validity and generalizability of the educational program created at Barnes-Jewish Hospital

Nationwide Comorbidity Network Hospital Name City, State # of Registrars Estimated cases/year Commission on Cancer Program Washington Hospital Center North Kansas City Hospital Washington, D.C. Kansas City, MO 3 818 Teaching Hospital Cancer Program 1 583 Community Hospital Cancer Program Queen of the Valley Hospital Napa, CA 1 377 Community Hospital Cancer Program Dakota Clinic Fargo, ND 3 948 Community Hospital Cancer Program Hannibal Regional Hospital Hannibal, MO 1 216 Community Hospital Cancer Program

The education materials included comorbidity coding book comorbidity video "The Whole Picture: Coding Comorbidity" 40 medical records of cancer patients with varying comorbidity severity from Barnes-Jewish Hospital 15 medical records of cancer patients from the participating centers

Education of Cancer Registrars at the Five Participating Hospitals The RA traveled to each of the five participating sites to train the cancer registrars to code comorbidity in June 1999 A total of nine cancer registrars participated in the program

The RA spent three days at each site Prior to the RA coming to the sites, the participating oncology data centers recorded the number of new cases and the time spent abstracting each case for one week

One and Six- Month Reassessment To ensure continued accuracy of comorbidity coding, the RA traveled to each site one and sixmonths after the initial training session to review a random selection of medical records Each participating site sent completed comorbidity ACE-27 forms to the PI each week The PI selected a random sample of sixteen charts for each cancer registrar at all sites for detail review by the RA

Post-Program Evaluation A questionnaire was sent to each cancer registrar at the completion of the project Gather feedback for improvements to the education program Questionnaires were returned anonymously to the Education Co-Investigator for evaluation

Quantitative Assessment of Cancer Registrars' Performance Reliability Weighted Kappa Statistic Validity Sensitivity Specificity

Weighted kappa statistic the degree of agreement beyond what would be expected by chance.41 -.60.61 -.80 Moderate Substantial.81-1.00 Almost perfect Sensitivity the proportion of correctly identified individuals with severe comorbidity Specificity the proportion of correctly identified individuals without severe comorbidity

Cancer Registrar Reliability Results Weighted Kappa Day 3 of One-month Training Assessment 1 0.92 1.0 1.0 2 0.96 0.83 ---- 3 0.96 0.97 0.94 4 1.0 0.88 0.95 5 0.87 0.81 0.68 6 0.96 1.0 ---- 7 0.96 0.86 0.97 8 0.96 0.94 1.0 9 0.96 0.94 0.97 Six-month Assessment

Validity Results Cancer Sensitivity Registrar Day 3 of Training One-month Assessment Six-month Assessment 1 2/2 (100%) 5/5 (100%) 5/5 (100%) 2 2/2 (100%) 1/1 (100%) ---- 3 2/2 (100%) 2/2 (100%) 3/3 (100%) 4 2/2 (100%) 2/2 (100%) 4/5 (80%) 5 2/2 (100%) 5/5 (100%) 3/3 (100%) 6 2/2 (100%) 1/1 (100%) ---- 7 2/2 (100%) 2/2 (100%) 3/3 (100%) 8 2/2 (100%) 5/5 (100%) 5/5 (100%) 9 2/2 (100%) 3/3 (100%) 4/4 (100%)

Validity Results Cancer Specificity Registrar Day 3 of Training One-month Assessment Six-month Assessment 1 8/8 (100%) 11/11 (100%) 11/11 (100%) 2 7/8 (88%) 12/13 (92%) ---- 3 8/8 (100%) 13/14 (93%) 12/13 (92%) 4 8/8 (100%) 14/14 (100%) 11/11 (100%) 5 7/8 (88%) 17/18 (94%) 12/13 (92%) 6 8/8 (100%) 12/12 (100%) ---- 7 8/8 (100%) 12/14 (86%) 13/13 (100%) 8 7/8 (88%) 17/17 (100%) 11/11 (100%) 9 8/8 (100%) 12/13 (92%) 11/12 (92%)

Burden of Coding Comorbidity Amount of time required to abstract complete medical record, including comorbidity Before training program, cancer registrar estimated time required to abstract complete medical record After training program, cancer registrar estimated time required to abstract complete medical record, including comorbidity

Box and Whisker Plot Abstraction Time (mins) 90 80 70 60 50 40 30 20 Maximum Third Quartile Median First Quartile 10 0 Without Comorbidity With Comorbidity Minimum

Qualitative Assessment of Cancer Education Program Extremely Very Somewhat Slightly Not at all How difficult is it to code comorbidity? How time consuming, on average, is coding comorbidity? How burdensome is coding comorbidity? 0 0 0 4 1 0 0 0 4 1 0 0 0 4 1 Comorbidity is no problem!

Qualitative Assessment of Cancer Education Program How well did we meet our main objective of teaching cancer registrars to code comorbidity accurately? Overall, how satisfied were you with the comorbidity education program? Extremely Very Somewhat Slightly Not at all 5 0 0 0 0 4 1 0 0 0 I feel that the education program is excellent.

Conclusions Results show that CTRs can code comorbidity efficiently and effectively Severity of comorbidity is associated with survival, selection of initial treatment, and assessment of quality of care Therefore, comorbidity coding should be included in hospital-based and national cancer registries

Future Work Obtain support from COC Committee on Standards to add comorbidity as a required data element With COC support, request NAACCR Data Standards Committee to add comorbidity as a required data element Development of a Web-based Comorbidity Education Program

Clinical Outcomes Research Web Site http://oto.wustl.edu/clinepi/