Evaluating the Feasibility of Developing National Outcomes Data Bases to Assist Patients with Making Treatment Decisions

Evaluating the Feasibility of Developing National Outcomes Data Bases to Assist Patients with Making Treatment Decisions

Cheryl L. Damberg
Liisa Hiatt
Kitty S. Chan
Rebecca Nolind
Michael Greenberg
Michael Steinberg
Matthias Schonlau
Jennifer Malin
Elizabeth A. McGlynn
Copyright Date: 2003
Published by: RAND Corporation
Pages: 146
https://www.jstor.org/stable/10.7249/mr1708ahrq
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  • Book Info
    Evaluating the Feasibility of Developing National Outcomes Data Bases to Assist Patients with Making Treatment Decisions
    Book Description:

    This report examines issues surrounding the establishment of a national patient outcomes database that would be used by patients and providers to make more informed treatment decisions. It focuses on prostate cancer and surgery for osteoarthritis. The authors conclude that such longitudinal databases would be both desirable and feasible but would require substantial resources.

    eISBN: 978-0-8330-5718-1
    Subjects: Health Sciences

Table of Contents

  1. Front Matter
    (pp. None)
  2. PREFACE
    (pp. i-ii)
  3. Table of Contents
    (pp. iii-iv)
  4. TABLES
    (pp. v-vi)
  5. EXECUTIVE SUMMARY
    (pp. vii-xii)
  6. ACKNOWLEDGMENTS
    (pp. xiii-xiv)
  7. CHAPTER 1: INTRODUCTION
    (pp. 1-8)

    Patients who are diagnosed with a particular medical condition frequently must choose among treatments that will minimize pain, reduce disability, and/or enhance their likelihood of survival. When information is not available on the outcomes of many treatments, patients cannot evaluate the trade-offs among the options. Patients are particularly interested in how people fare who are similar to them based on clinical characteristics (e.g., for prostate cancer the PSA value, Gleason Score, presence of other comorbid conditions) or demographic characteristics (e.g., gender, age, race/ethnicity). Information that does exist on the outcomes of care is often not well organized or easily accessible...

  8. CHAPTER 2: A FRAMEWORK FOR ASSESSING THE FEASIBILITY OF ESTABLISHING NATIONAL OUTCOMES DATA BASES
    (pp. 9-22)

    The design and construction of a national outcomes data base is a substantial undertaking, financially and logistically, and one that may not be appropriate for all clinical conditions. It is therefore important to establish a set of criteria that can be used to help guide decisions about whether a condition is a worthy candidate for such a data base. These criteria can be used as a first-level screen for assessing the likelihood for success of making an investment in data collection that will require long-term participation by a large number of patients and clinicians. Moreover, it is important to examine...

  9. CHAPTER 3: SHARED DECISION-MAKING: A REVIEW OF THE LITERATURE
    (pp. 23-36)

    Shared decision-making has gained greater relevance for clinical medicine in recent years. When treatment alternatives are available but none is clearly superior, there is greater recognition that patient values and preferences should factor into decision-making (Barry, 1999). However, incorporating shared decision-making into clinical practice has been challenging, owing to: (1) the lack of role models and training for clinicians; (2) the limited time available during clinical encounters; (3) the complexity of evaluating and clearly communicating to patients the tradeoffs in the risks and benefits of treatment; and (4) the lack of good, relevant data to inform decision-making (Dunn et al.,...

  10. CHAPTER 4: PROSTATE CANCER DATA BASE FEASIBILITY ASSESSMENT
    (pp. 37-86)

    Prostate cancer is the most common form of non-skin cancer in men in the United States (American Cancer Society website, 2002) and is the second leading cause of cancer-related death among men in the United States (Jemal et al., 2002). The American Cancer Society (ACS) projects that in 2002, 189,000 new cases of prostate cancer will be diagnosed. Approximately 70 percent of all cases are diagnosed in men age 65 years and older. Prostate cancer is about twice as common in African-American men as in white men. The incidence of prostate cancer in the United States has increased over the...

  11. CHAPTER 5: OSTEOARTHRITIS DATA BASE FEASIBILITY ASSESSMENT
    (pp. 87-106)

    Osteoarthritis in hips or knees, a chronic health condition, is the leading cause of disability among elderly Americans. As the elderly population continues to grow in the United States, the number of osteoarthritis cases is expected to increase. The CDC estimates that more than 60 million Americans will have the disease by 2050 and that the cost of treatment will exceed $65 billion, including medical treatment and lost productivity.

    Treatments for osteoarthritis include diet, exercise, pharmacotherapy, surgery, and various holistic approaches. There is no cure for osteoarthritis. Treatments for osteoarthritis help slow the progression of the disease, ease pain, and...

  12. CHAPTER 6: CONCLUSIONS AND RECOMMENDATIONS
    (pp. 107-110)

    Based on our review of prostate cancer and osteoarthritis as two candidate clinical conditions that illustrate the complexity of treatment choices faced by patients, we found a very strong desire among patients to have access to an information source that would not only explain what their condition is but would also help them understand what the various treatment options are and what outcomes (i.e., survival, functioning, side effects) people like themselves could expect from each of the various treatment options. Overwhelmingly, patients observed that information on differences between treatment options and outcomes was difficult to obtain, was not synthesized and...

  13. APPENDIX A: Draft Questions—Prostate Cancer Consultative Meeting; March 22, 2002
    (pp. 111-114)
  14. APPENDIX B: Draft Questions—Arthritis Consultative Meeting; March 13, 2002
    (pp. 115-120)
  15. APPENDIX C: Prostate Cancer Meeting Participants
    (pp. 121-122)
  16. APPENDIX D: Arthritis Meeting Participants
    (pp. 123-124)
  17. REFERENCES
    (pp. 125-132)