Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

Keynote webinar | Spotlight on medication adherence

LIVE: Thursday 27th June 2024, 18:00-19:30 (CEST)
Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.
ADVANCED SEARCH
Log in
Top
Supportive Care in Cancer
Published in: Supportive Care in Cancer 8/2006

01-08-2006 | Original Article

Understanding cancer patients’ experience and outcomes: development and pilot study of the Cancer Care Outcomes Research and Surveillance patient survey

Authors: Jennifer L. Malin, Clifford Ko, John Z. Ayanian, David Harrington, David R. Nerenz, Katherine L. Kahn, Julie Ganther-Urmie, Paul J. Catalano, Alan M. Zaslavsky, Robert B. Wallace, Edward Guadagnoli, Neeraj K. Arora, Maryse D. Roudier, Patricia A. Ganz

Published in: Supportive Care in Cancer | Issue 8/2006

Login to get access

Abstract

Goals of work

The National Cancer Institute’s Cancer Care Outcomes Research and Surveillance (CanCORS) Consortium is conducting a population-based study of newly diagnosed patients with lung and colorectal cancer to describe the experience of persons living with cancer and to understand which barriers present the most significant obstacles to their receipt of appropriate care. The keystone to this effort is the baseline patient survey administered approximately 4 months after diagnosis.

Patients and methods

We developed a survey to obtain information from patients newly diagnosed with lung and colorectal cancer about their personal characteristics, decision making, experience of care, and outcomes. We conducted a pilot study to evaluate the feasibility of a lengthy and clinically detailed interview in a convenience sample of patients within 8 months of diagnosis (n=71).

Main results

The median length of the interviews was 75 min for patients with lung cancer (range 43–130) and 82 min for patients with colorectal cancer (range 46–119). Most patients had received some form of treatment for their cancer: 66.1% had undergone surgery, 28.2% had received radiation therapy, and 54.9% were treated with chemotherapy. In addition, 26.7% reported their overall health was less than 70 on a 0–100 scale, demonstrating that patients with substantial health impairment were able to complete the survey.

Conclusions

A clinically detailed survey of newly diagnosed lung and colorectal cancer patients is feasible. A modified version of this survey is being fielded by the CanCORS Consortium and should provide much needed population-based data regarding patients’ experiences across the continuum of cancer care and their outcomes.
Literature
1.
Cancer survivorship—United States, 1971–2001 (2004) MMWR Morb Mortal Wkly Rep 53:526–529
2.
Cella DF, Bonomi AE (1995) Measuring quality of life: 1995 update. Oncology (Huntingt) 9:47–60
3.
Ganz PA (2002) What outcomes matter to patients: a physician-researcher point of view. Med Care 40:III11–III19CrossRefPubMed
4.
Ganz PA (1994) Quality of life and the patient with cancer. Individual and policy implications. Cancer 74:1445–1452PubMedCrossRef
5.
Aaronson NK (1988) Quality of life: what is it? How should it be measured? Oncology (Huntingt) 2:69–76
6.
Hewitt M, Rowland JH, Yancik R (2003) Cancer survivors in the United States: age, health, and disability. J Gerontol A Biol Sci Med Sci 58:82–91PubMed
7.
Rowland JH, Aziz N, Tesauro G et al (2001) The changing face of cancer survivorship. Semin Oncol Nurs 17:236–240CrossRefPubMed
8.
Lipscomb J, Donaldson MS (2003) Outcomes research at the National Cancer Institute: measuring, understanding, and improving the outcomes of cancer care. Clin Ther 25:699–712CrossRefPubMed
9.
Brown ML, Lipscomb J, Snyder C (2001) The burden of illness of cancer: economic cost and quality of life. Annu Rev Public Health 22:91–113CrossRefPubMed
10.
Freeman HP, Reuben SH (eds) (2002) Voices of a broken system: real people, real problems. President’s Cancer Panel, Report of the Chairman, 2000–2001. National Cancer Institute, National Institutes of Health, Bethesda, MD
11.
Reuben SH (2004) Living beyond cancer: finding a new balance. President’s Cancer Panel, 2003–2004 Annual Report. National Cancer Institute, National Institutes of Health, Bethesda, MD
12.
Hewitt M, Simone J (eds) (1999) Ensuring quality cancer care. National Cancer Policy Board, Institute of Medicine, National Academy Press, Washington, DC, pp i–236
13.
Yabroff KR, Lawrence WF, Clauser S et al (2004) Burden of illness in cancer survivors: findings from a population-based national sample. J Natl Cancer Inst 96:1322–1330PubMedCrossRef
14.
Shavers VL, Brown ML (2002) Racial and ethnic disparities in the receipt of cancer treatment. J Natl Cancer Inst 94:334–357PubMed
15.
Potosky AL, Harlan LC, Kaplan RS et al (2002) Age, sex, and racial differences in the use of standard adjuvant therapy for colorectal cancer. J Clin Oncol 20:1192–1202CrossRefPubMed
16.
Potosky AL, Saxman S, Wallace RB et al (2004) Population variations in the initial treatment of non-small-cell lung cancer. J Clin Oncol 22:3261–3268CrossRefPubMed
17.
Bach PB, Cramer LD, Warren JL et al (1999) Racial differences in the treatment of early-stage lung cancer. N Engl J Med 341:1198–1205CrossRefPubMed
18.
Schrag D, Cramer LD, Bach PB et al (2001) Age and adjuvant chemotherapy use after surgery for stage III colon cancer. J Natl Cancer Inst 93:850–857CrossRefPubMed
19.
Hodgson DC, Fuchs CS, Ayanian JZ (2001) Impact of patient and provider characteristics on the treatment and outcomes of colorectal cancer. J Natl Cancer Inst 93:501–515CrossRefPubMed
20.
Ayanian JZ, Zaslavsky AM, Fuchs CS et al (2003) Use of adjuvant chemotherapy and radiation therapy for colorectal cancer in a population-based cohort. J Clin Oncol 21:1293–1300CrossRefPubMed
21.
Hillner BE, McDonald MK, Desch CE et al (1998) A comparison of patterns of care of nonsmall cell lung carcinoma patients in a younger and Medigap commercially insured cohort. Cancer 83:1930–1937CrossRefPubMed
22.
de Rijke JM, Schouten LJ, Schouten HC et al (1996) Age-specific differences in the diagnostics and treatment of cancer patients aged 50 years and older in the province of Limburg, The Netherlands [see comments]. Ann Oncol 7:677–685PubMed
23.
Fry WA, Menck HR, Winchester DP (1996) The National Cancer Data Base report on lung cancer. Cancer 77:1947–1955CrossRefPubMed
24.
Earle CC, Venditti LN, Neumann PJ et al (2000) Who gets chemotherapy for metastatic lung cancer? Chest 117:1239–1246CrossRefPubMed
25.
Lackan NA, Ostir GV, Freeman JL et al (2004) Decreasing variation in the use of hospice among older adults with breast, colorectal, lung, and prostate cancer. Med Care 42:116–122CrossRefPubMed
26.
Ayanian JZ, Chrischilles EA, Wallace RB et al (2004) Understanding cancer treatment and outcomes: the Cancer Care Outcomes Research and Surveillance Consortium. J Clin Oncol 22:2992–2996CrossRefPubMed
27.
National Cancer Institute: The Nation’s Investment in Cancer Research (2002) NIH Publication No. 03-4373. Bethesda, MD
28.
Ganz PA, Haskell CM, Figlin RA et al (1988) Estimating the quality of life in a clinical trial of patients with metastatic lung cancer using the Karnofsky performance status and the Functional Living Index-Cancer. Cancer 61:849–856PubMedCrossRef
29.
Finkelstein DM, Cassileth BR, Bonomi PD, Ruckdeschel JC, Ezdinli EZ, Wolter JM (1988) A pilot study of the Functional Living Index-Cancer (FLIC) scale for the assessment of quality of life for metastatic lung cancer patients. An Eastern Cooperative Oncology Group study. Am J Clin Oncol 11:630–633PubMedCrossRef
30.
Frey JH (1989) Survey research by telephone, 2nd edn. In: SAGE Libr Soc Res, vol 150. Sage, Beverly Hills, CA, pp 33–78
31.
Ketola E, Klockars M (1999) Computer-assisted telephone interview (CATI) in primary care. Fam Pract 6:179–183CrossRef
32.
California Health Interview Survey (2001) UCLA Center for Health Policy Research
33.
Ponce NA, Lavarreda SA, LS, Yen W, Brown ER, DiSogra C, Satter DE (2004) The California Health Interview Survey 2001: translation of a major survey for California’s multiethnic population. Public Health Rep 119:388–395CrossRefPubMed
34.
Bradley CJ Labor market outcomes of long-term cancer survivors, R01 CA86045-01A1. National Cancer Institute
35.
Tao ML, Malin J, Ganz P et al (2004) Predictors of use of sentinel lymph node biopsy (SNB) in a population-based cohort of breast cancer (BC) patients (pts). J Clin Oncol, 2004 ASCO Annual Meeting Proceedings (Post-Meeting Edition) 22:6006
36.
Comis RL, Miller JD, Aldige CR, Krebs L, Stoval E (2003) Public attitudes toward participation in cancer clinical trials. J Clin Oncol 21:830–835CrossRefPubMed
37.
Ware J Jr, Kosinski M, Keller SD (1996) A 12-Item Short-Form Health Survey: construction of scales and preliminary tests of reliability and validity. Med Care 34:220–233CrossRefPubMed
38.
Aaronson NK, Ahmedzai S, Bergman B et al (1993) The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 85:365–376PubMedCrossRef
39.
Sprangers MA, te Velde A, Aaronson NK (1999) The construction and testing of the EORTC colorectal cancer-specific quality of life questionnaire module (QLQ-CR38). European Organization for Research and Treatment of Cancer Study Group on Quality of Life. Eur J Cancer 35:238–247CrossRefPubMed
40.
Aaronson NK, Cull A, Kaasa S et al (1994) The European Organization for Research and Treatment of Cancer (EORTC) modular approach to quality of life assessment in oncology. Int J Ment Health 23:75–96
41.
42.
Melchior LA, Huba GJ, Brown VB, Reback CJ (1993) A short depression index for women. Educ Psychol Meas 53:1117–1125CrossRef
43.
44.
Cleeland CS RK (1994) Pain assessment: global use of the Brief Pain Inventory. Ann Acad Med Singapore 23:129–138PubMed
45.
Ware JE Jr, Sherbourne CD (1992) The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 30:473–483PubMedCrossRef
46.
Ware JE Jr, Kosinski M, Bayliss MS et al (1995) Comparison of methods for the scoring and statistical analysis of SF-36 health profile and summary measures: summary of results from the Medical Outcomes Study. Med Care 33:AS264–AS279PubMedCrossRef
47.
Katz JN, Chang LC, Sangha O et al (1996) Can comorbidity be measured by questionnaire rather than medical record review? Med Care 34:73–84CrossRefPubMed
48.
Klabunde CN, Reeve BB, Harlan LC et al (2005) Do patients consistently report comorbid conditions over time? Results from the Prostate Cancer Outcomes Study. Med Care 43:391–400CrossRefPubMed
49.
Hedley AA, Ogden CL, Johnson CL et al (2004) Prevalence of overweight and obesity among US children, adolescents, and adults, 1999–2002. JAMA 291:2847–2850CrossRefPubMed
50.
Wagenknecht LE, Burke GL, Perkins LL et al (1992) Misclassification of smoking status in the CARDIA study: a comparison of self-report with serum cotinine levels. Am J Public Health 82:33–36PubMedCrossRef
51.
52.
Brooks R, Rabin RE, de Charro FE (eds) (2003) The measurement and valuation of health status using EQ-5D: a European perspective. Kluwer, Rotterdam, The Netherlands
53.
Hays RD, Shaul JA, Williams VS et al (1999) Psychometric properties of the CAHPS 1.0 survey measures. Consumer Assessment of Health Plans Study. Med Care 37:MS22–MS31CrossRefPubMed
54.
Cleary PD, Edgman-Levitan S, Roberts M et al (1991) Patients evaluate their hospital care: a national survey. Health Aff (Millwood) 10:254–267CrossRef
55.
Ayanian JZ, Zaslavsky AM, Guadagnoli E et al (2005) Patients’ perceptions of quality of care for colorectal cancer by race, ethnicity, and language. J Clin Oncol 23:6576–6586CrossRefPubMed
56.
Degner LF, Kristjanson KL, Bowman D, Sloan JA, Carriere KC, O’Neil J, Bilodeau B WP, Mueller B (1997) Information needs and decisional preferences in women with breast cancer. JAMA 277:1485–1492CrossRefPubMed
57.
Degner LF, Sloan JA, Venkatesh P (1997) The Control Preferences Scale. Can J Nurs Res 29:21–43PubMed
58.
McLaughlin GH (1969) SMOG grading—a new readability formula. J Read 12:639–636
59.
Fry E (1977) Fry’s readability graph: clarifications, validity, and extension to level 17. J Read 21:242–252
60.
Morales LS, Weidmer BO, Hays RD (2001) Readability of CAHPS 2.0 Child and Adult Core Surveys. In: Cynamon ML, Kulka RA (eds) Proceedings of the seventh conference on health survey research methods. Department of Health and Human Services, Hyattsville, MD, pp 83–90
61.
Aaronson N (1989) Quality of life assessment in clinical trials: methodologic issues. Control Clin Trials 10:195S–208SCrossRefPubMed
62.
Fromme EK, Eilers KM, Mori M et al (2004) How accurate is clinician reporting of chemotherapy adverse effects? A comparison with patient-reported symptoms from the quality-of-life questionnaire C30. J Clin Oncol 22:3485–3490CrossRefPubMed
Metadata
Title
Understanding cancer patients’ experience and outcomes: development and pilot study of the Cancer Care Outcomes Research and Surveillance patient survey
Authors
Jennifer L. Malin
Clifford Ko
John Z. Ayanian
David Harrington
David R. Nerenz
Katherine L. Kahn
Julie Ganther-Urmie
Paul J. Catalano
Alan M. Zaslavsky
Robert B. Wallace
Edward Guadagnoli
Neeraj K. Arora
Maryse D. Roudier
Patricia A. Ganz
Publication date
01-08-2006
Publisher
Springer-Verlag
Published in
Supportive Care in Cancer / Issue 8/2006
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-005-0902-8

Other articles of this Issue 8/2006

Supportive Care in Cancer 8/2006 Go to the issue

Original Article

Distance art groups for women with breast cancer: guidelines and recommendations

Forthcoming Meetings

Forthcoming meetings

Short Communication

Elderly patients with squamous lung carcinoma: faring better or worse?

Original Article

Symptom clusters in cancer patients

Editorial

Symptom clusters: establishing the link between clinical practice and symptom management research

Original Article

Cancer patients’ preferences for communication of unfavourable news: an Asian perspective
Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Watch now

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras
Prof. Fabrice Barlesi
Developed by: Springer Medicine
Image Credits