Outcome Measures for Health Education and Other Health Care Interventions

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Kate Lorig, Anita Stewart, Philip Ritter, Virginia González, Diana Laurent> & John Lynch

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    Acknowledgments

    Many people and organizations were instrumental in the completion of this book. The Chronic Disease Self-Management Program is a collaborative research study conducted by the Stanford University School of Medicine and the Kaiser Permanente Medical Care Program, Northern California. The study was funded by California Tobacco-Related Disease Research Program Award No. RT156 and the Agency for Health Services Policy and Research Grant No. 5RO1HS06680. The validation of the Spanish scales was funded by the National Institute for Nursing Research Grant No. R01 NRO3146–01. We owe many thanks to these agencies and particularly our program officers. Without these awards, this work would not have been possible.

    Others to whom we owe a debt of gratitude are David Sobel, Halsted Holman, Albert Bandura, Dan Bloch, and William Byron Brown, Jr. All have collaborated and added their wisdom to this work. Roslyn Bienenstock spent many hours securing all the necessary permissions to reprint instruments. Christine Smedley and Vicki Baker from Sage Publications have been ever helpful with their suggestions. Cielo Santos and Larissa Ortiz spent many hours in data coding and entry and typing manuscripts.

    Finally, we would like to thank the more than 1,500 people who have completed our questionnaires.

    Introduction

    Before the mid-1970s, most health care interventions were evaluated on the basis of their effects on physiologic outcomes, such as blood pressure and blood glucose; clinical outcomes, such as prognosis; or mortality. At the same time, health education interventions were evaluated primarily on the basis of changes in knowledge or behaviors. Since that time, health services, behavioral medicine, and health education interventions have added outcomes based on patients' perspective of their day-to-day functioning and well-being. These more recent outcomes fall into several categories: physical disability (such as limitations in activities of daily living and role limitations), mental distress (such as depression and anxiety), distressful symptoms (such as pain and shortness of breath), and cost, which is often measured by surrogates such as utilization of health care resources.

    As assessment of health outcomes from the patient's perspective has become the new standard, many instruments (scales) have been developed. For the most part these are self-administered, which has allowed for more practical and relatively low-cost evaluations.

    Based on the above trends in outcomes measurement, this book presents a collection of outcome measures with strong psychometric properties that can be used by practitioners and researchers to evaluate a variety of intervention studies, with a special emphasis on health education interventions.

    The emphasis of the book is on a set of outcome measures that were developed at the Stanford Patient Education Research Center for use in its studies of chronic disease self-management programs. Because most of these scales have not been previously published, we also present how the scales were formulated and the psychometric properties of each scale. In addition, we present in the appendices several scales formulated by other researchers that we and our colleagues have found useful.

    Chapter 1 contains information on the rationale for the Chronic Disease Self-Management (CDSM) study instruments and how we determined which outcomes to measure. Chapter 2 contains psychometric information on each of the scales used in the study. Appendix A contains the actual items in each of the study scales, along with information about coding. Please note that our scales in Appendix A can be used without further copyright permission. But if they are used, we would like to be informed of study results and any problems that may arise in the use of these instruments. Please send your results or queries to the Stanford Patient Education Research Center, 1000 Welch Road, Suite 204, Palo Alto, CA 94304, or contact us by e-mail at KRL@DBN.Stanford.edu.

    Appendixes B through E are compendiums of outcome instruments that we have collected from other sources. For each instrument, we give references and coding information. In Appendix F, we present Spanish translations for some of the instruments. These translations were part of a study evaluating a Spanish Arthritis Self-Management Program. The information on the development and psychometric properties of these instruments is referenced. It should be noted that the development process included Spanish-speaking people from different countries of origin. These translations use “standard” Spanish, which should be understood by most Spanish-speaking people in the United States, Mexico, and Central and South America. Finally, we provide a list of additional sources for more measures in Appendix G.

    The scales in this book do not represent a comprehensive collection of all appropriate outcome measures. Nor are they meant to represent the “best” measures. Rather, they were chosen because they have all been used by or are well known to the authors. They have proven themselves to be understood by, and acceptable to, patients and other research subjects. Nearly all of them have proven useful in measuring change in intervention studies.

  • Appendixes: Summary and Instructions

    These appendixes are organized as follows:

    Appendix A: Chronic Disease Self-Management Study Measures Self-Management Behaviors

    • Self-Efficacy
    • Health Outcomes

    Appendix B: Multidimensional Health Profiles

    • SF-36 Health Survey
    • Illness Intrusiveness Ratings Scale

    Appendix C: Measures of Individual Health Constructs

    • Global Health and Quality of Life
    • Function
    • Fatigue
    • Pain
    • Depression

    Appendix D: Measures of Health Behaviors

    • Medication Taking
    • Coping

    Appendix E: Patient Satisfaction Measures

    • Picker Ambulatory Care Patient Interview
    • Group Health Association of America Consumer Satisfaction Survey

    Appendix F: Selected Spanish Language Scales

    Appendix G: Sources for More Measures

    The instruments presented in these appendixes have been tested. The scales that follow are those that we have found useful, either through our own experience or through the experience of others whose work we admire. Because we cannot present a comprehensive set of instruments here, we have included a list of some other sources that you may find useful in Appendix G.

    Each instrument is presented with the scale itself reproduced first. General instructions and the response categories are shown once, rather than with each question as they would be on an actual questionnaire. The individual questions composing the scale are then listed verbatim.

    Scoring instructions follow the scales. If the scale's developers have provided instructions on how to handle missing data, we have included them. If not, we generally recommend not scoring the scale if more than 25% of the items are missing. Other authors, however, recommend 50%. Because the missing data cutoff point is arbitrary, you will need to make that decision on the basis of your population and the scale you decide to use.

    Following the scoring instructions, we have included a selected bibliography.

    Appendix A: Chronic Disease Self-Management Study Measures

    List of Measures

    I. Self-Management Behaviors

    Exercise

    Cognitive symptom management

    Mental stress management/relaxation

    Use of community services for tangible help

    Use of community services for emotional support

    Use of community education and support groups for health problems

    Use of organized exercise programs

    Communication with physician

    Advance directives:

    • Has living will/durable power of attorney
    • Discussed with doctor
    • Discussed with family

    II. Self-Efficacy

    • Self-efficacy to perform self-management behaviors
      • SE exercise regularly
      • SE get information about diseas
      • SE obtain help from community, family, friends
      • SE communicate with physician
    • Self-efficacy to manage disease in general
    • Self-efficacy to achieve outcomes
      • SE do chores
      • SE social/recreational activities
      • SE manage symptoms
      • SE shortness of breath
      • SE control/manage depression

    III. Health Outcomes

    • Health status
      • Disability
      • Social/role activities limitations
      • Pain and physical discomfort
      • Energy/fatigue
      • Shortness of breath
      • Psychological well-being/distress
      • Depressive symptoms
      • Health distress
      • Self-rated health
    • Health care utilization
      • Visits to physicians
      • Visits to mental health providers
      • Visits to other providers
      • Visits to emergency department
      • Hospital stays
      • Nights in hospital
      • Outpatient surgeries
    Self-Management Behaviors
    Exercise

    During the past week (even if it was not a typical week), how much total time (for the entire week) did you spend on each of the following? (Please circle one number for each question.)

    NoneLess than 30 minutes/week30–60 minutes/week1–3 hours/weekMore than 3 hours/week
    01234
    • Stretching or strengthening exercises (range of motion, using weights, etc.)
    • Walk for exercise
    • Swimming or aquatic exercise
    • Bicycling (including stationary exercise bike)
    • Other aerobic exercise equipment (Stairmaster, rowing or skiing machine)
    • Other aerobic exercise—specify:___

    Note: A validated Spanish translation of this measure can be found in Appendix F.

    Scoring. Each category is converted to the following number of minutes spent:

    NoneLess than 30 minutes/week30–60 minutes/week1–3 hours/weekMore than 3 hours/week
    01545120180

    Time spent in stretching or strengthening exercise is the value for Item 1.

    Time spent in aerobic exercise is the sum of the values for Items 2 through 6.

    Cognitive Symptom Management

    When you are feeling down in the dumps, feeling pain, or having other unpleasant symptoms, how often do you … (please circle one number for each question)

    NeverAlmost neverSometimesFairly oftenVery oftenAlways
    012345
    • Try to feel distant from the discomfort and pretend that it is not part of your body?
    • Don't think of it as discomfort but as some other sensation, like a warm, numb feeling?
    • Play mental games or sing songs to keep your mind off the discomfort?
    • Practice progressive muscle relaxation?
    • Practice visualization or guided imagery, such as picturing yourself somewhere else?
    • Talk to yourself in positive ways?

    Scoring. The score is the mean of the six items. If more than two items are missing answers, set the value of the score for this scale to missing. Scores range from 0 to 5, with a higher score indicating more practice of these techniques.

    Mental Stress Management/Relaxation

    In the past week (even if it was not a typical week), how many times did you do mental stress management or relaxation techniques?

    [ ] None ___times

    Describe what you do to relax:___

    Scoring. Single item only. If technique described is not a cognitive stress management technique, code as “0.” Examples of cognitive techniques include progressive muscle relaxation, imagery, prayer, and meditation. Activities such as reading, listening to music, napping, and deep breathing are not considered cognitive strategies and should receive a score of “0.” The number of times is then categorized into an ordinal scale with the following categories:

    1 = None

    2 = 1–7 times/week

    3 = 8 or more times/week

    This item can also be left as a continuous measure: that is, the actual times per week coded.

    Use of Community Services for Tangible Help

    In the past 6 months, have you gotten help from resources other than friends or family for the following services? (Please circle yes or no for each category.)

    NoYes
    Housecleaning01
    Yard work01
    Home maintenance/repairs01
    Meals01
    Personal hygiene01
    Errands01
    Transportation01

    Scoring. The score is the count of resources circled “yes,” with a possible range of 0 to 7.

    Use of Community Services for Emotional Support

    In the past 6 months, have you gotten help from resources other than friends or family for the following services? (Please circle yes or no for each category.)

    NoYes
    Emotional support or counseling01

    Scoring. This is a single dichotomous item.

    Use of Community Education Services/Support Groups for Health Problems

    Outside of this study, have you attended any classes, lectures, or support groups about your health problem in the past 6 months?

    [ ] No[ ] YesIf yes, how many total hours did you attend in the last 6 months? ___ hours

    Scoring. The score is the hours attended that can then be categorized into an ordinal score with the following categories:

    1 = None

    2 = 1–5 hours

    3 = 6–10 hours

    4 = 11 or more hours

    This item may also be divided into two separate questions: one asking about attendance at classes or lectures and the other asking about attendance at support groups. The same categorical choices from above can be used.

    Use of Organized Exercise Programs

    In the past 6 months, have you attended any organized exercise programs (such as walking clubs, aerobic classes, or water exercise programs)?

    [ ] No[ ] YesIf yes, how many total hours did you attend in the last 6 months? ___ hours

    Scoring. The score is the hours attended that can then be categorized into an ordinal scale with the following categories:

    1 = None2 = 1–18 hours3 = 19–47 hours4 = 48 or more hours
    Communication with Physician

    When you visit your doctor, how often do you do the following? (Please circle one number for each question.)

    NeverAlmost neverSometimesFairly oftenVery oftenAlways
    012345
    • Prepare a list of questions for your doctor?
    • Ask questions about the things you want to know and the things you don't understand about your treatment?
    • Discuss any personal problems that may be related to your illness?

    Scoring. The score is the mean of the three items. If more than one is missing, set the value of the score for this scale to missing. Scores range from 0 to 5, with a higher score indicating better communication with the physician.

    Advance Directives
    (Circleone)
    NoYes
    1. Do you have a “living will” or a “durable power of attorney for health matters”?01
    2. Have you discussed your wishes in the event of serious illness or impending death with your doctor?01
    3. Have you discussed your wishes in the event of serious illness or impending death with your family?01

    Scoring. Each question is a single dichotomous item.

    Self-Efficacy
    Self-Efficacy to Perform Self-Management Behaviors
    SE Exercise Regularly

    We would like to know how confident you are in doing certain activities. For each of the following questions, please circle the number that corresponds to your confidence that you can do the tasks regularly at the present time.

    How confident are you that you can …

    Not at all confident12345678910Totally confident
    • Do gentle exercises for muscle strength and flexibility three to four times per week (range of motion, using weights, etc.)?
    • Do an aerobic exercise such as walking, swimming, or bicycling three to four times each week?
    • Exercise without making your symptoms worse?

    Scoring. Score is the mean of the three items. If more than one item is missing, set the value of the score for this scale to missing. Scores range from 1 to 10, with a higher score indicating greater self-efficacy.

    SE Get Information about Disease

    We would like to know how confident you are in doing certain activities. For each of the following questions, please circle the number that corresponds to your confidence that you can do the tasks regularly at the present time.

    How confident are you that you can …

    Not at all confident12345678910Totally confident
    • Get information about your disease from community resources?

    Scoring. This is a single-item scale; scores range from 1 to 10, with a higher score indicating greater self-efficacy.

    SE Obtain Help from Community, Family, and Friends

    We would like to know how confident you are in doing certain things. For each of the following questions, please circle the number that corresponds to your confidence that you can do the tasks regularly at the present time.

    How confident are you that you can …

    Not at all confident12345678910Totally confident
    • Get family and friends to help you with the things you need (such as household chores like shopping, cooking, or transport)?
    • Get emotional support from friends and family (such as listening or talking over your problems)?
    • Get emotional support from resources other than friends or family, if needed?
    • Get help with your daily tasks (such as housecleaning, yard work, meals, or personal hygiene) from resources other than friends or family, if needed?

    Scoring. The score is the mean of the four items. If more than one item is missing, set the value of the score for this scale to missing. Scores range from 1 to 10, with a higher score indicating greater self-efficacy.

    SE Communicate with Physician

    We would like to know how confident you are in doing certain activities. For each of the following questions, please circle the number that corresponds to your confidence that you can do the tasks regularly at the present time.

    How confident are you that you can …

    Not at all confident12345678910Totally confident
    • Ask your doctor things about your illness that concern you?
    • Discuss openly with your doctor any personal problems that may be related to your illness?
    • Work out differences with your doctor when they arise?

    Scoring. The score is the mean of the three items. If more than one item is missing, set the value of the score for this scale to missing. Scores range from 1 to 10, with a higher score indicating greater self-efficacy.

    Self-Efficacy to Manage Disease in General
    SE to Manage Disease in General

    We would like to know how confident you are in doing certain activities. For each of the following questions, please circle the number that corresponds to your confidence that you can do the tasks regularly at the present time.

    How confident are you that you can …

    Not at all confident12345678910Totally confident
    • Having an illness often means doing different tasks and activities to manage your condition. How confident are you that you can do all the things necessary to manage your condition on a regular basis?
    • Judge when the changes in your illness mean you should visit a doctor?
    • Do the different tasks and activities needed to manage your health condition so as to reduce your need to see a doctor?
    • Reduce the emotional distress caused by your health condition so that it does not affect your everyday life?
    • Do things other than just taking medication to reduce how much your illness affects your everyday life?

    Scoring. The score is the mean of the five items. If more than two items are missing, set the value of the score for this scale to missing. Scores range from 1 to 10, with a higher score indicating greater self-efficacy.

    Self-Efficacy to Achieve Outcomes
    SE Do Chores

    We would like to know how confident you are in doing certain activities. For each of the following questions, please circle the number that corresponds to your confidence that you can do the tasks regularly at the present time.

    How confident are you that you can …

    Not at all confident12345678910Totally confident
    • Complete your household chores, such as vacuuming and yard work, despite your health problems?
    • Get your errands done despite your health problems?
    • Get your shopping done despite your health problems?

      Scoring. The score is the mean of the three items. If more than one item is missing, set the value of the score for this scale to missing. Scores range from 1 to 10, with a higher score indicating greater self-efficacy.

    SE Social/Recreational Activities

    We would like to know how confident you are in doing certain activities. For each of the following questions, please circle the number that corresponds to your confidence that you can do the tasks regularly at the present time.

    How confident are you that you can …

    Not at all confident12345678910Totally confident
    • Continue to do your hobbies and recreation?
    • Continue to do the things you like to do with friends and family (such as social visits and recreation)?

    Scoring. The score is the mean of the two items. If either item is missing, set the value of the score for this scale to missing. Scores range from 1 to 10, with a higher score indicating greater self-efficacy.

    SE Manage Symptoms

    We would like to know how confident you are in doing certain activities. For each of the following questions, please circle the number that corresponds to your confidence that you can do the tasks regularly at the present time.

    How confident are you that you can …

    Not at all confident12345678910Totally confident
    • Reduce your physical discomfort or pain?
    • Keep the fatigue caused by your disease from interfering with the things you want to do?
    • Keep the physical discomfort or pain of your disease from interfering with the things you want to do?
    • Keep any other symptoms or health problems you have from interfering with the things you want to do?
    • Control any symptoms or health problems you have so that they don't interfere with the things you want to do?

    Scoring. The score is the mean of the five items. If more than two items are missing, set the value of the score for this scale to missing. Scores range from 1 to 10, with a higher score indicating greater self-efficacy.

    SE Manage Shortness of Breath

    We would like to know how confident you are in doing certain activities. For each of the following questions, please circle the number that corresponds to your confidence that you can do the tasks regularly at the present time.

    How confident are you that you can …

    Not at all confident12345678910Totally confident
    • Keep your shortness of breath from interfering with what you want to do?

    Scoring. This is a single-item scale; scores range from 1 to 10, with a higher score indicating greater self-efficacy.

    SE Control/Manage Depression

    We would like to know how confident you are in doing certain activities. For each of the following questions, please circle the number that corresponds to your confidence that you can do the tasks regularly at the present time.

    How confident are you that you can …

    Not at all confident12345678910Totally confident
    • Keep from getting discouraged when nothing you do seems to make any difference?
    • Keep from feeling sad or down in the dumps?
    • Keep yourself from feeling lonely?
    • Do something to make yourself feel better when you are feeling lonely?
    • Do something to make yourself feel better when you are feeling discouraged?
    • Do something to make yourself feel better when you feel sad or down in the dumps?

    Scoring. The score is the mean of the six items. If more than two items are missing, set the value of the score for this scale to missing. Scores range from 1 to 10, with a higher score indicating greater self-efficacy.

    Outcomes
    Health Status
    Disability

    Please circle the one response that best describes your usual abilities over the past 4 weeks:

    Are you able to …

    Without any difficultyWith some difficultyWith much difficultyUnable to do
    0123
    • Dress yourself, including tying shoelaces and doing buttons?
    • Brush/comb your hair?
    • Stand up from an armless straight chair?
    • Get in and out of bed?
    • Get up from off the floor?
    • Cut your food with a knife or fork?
    • Lift a full cup or glass to your mouth?
    • Walk outdoors one block on flat ground?
    • Walk outdoors several blocks on flat ground?
    • Climb up five steps?
    • Climb up one flight of steps?
    • Wash and dry your entire body?
    • Get on and off the toilet?
    • Take a tub bath?
    • Reach and get down a 5-pound object (such as a bag of sugar) from just above your head?
    • Bend down (such as to pick up clothing from the floor)?
    • Open jars which have been previously opened?
    • Turn faucets on and off?
    • Run errands and shop?
    • Do household chores (such as vacuuming, yard work, laundry, and handyman work)?
    • Get to places out of walking distance (by car or public transportation)?
    • Carry a bag of groceries across a room?
    Without any difficultyWith some difficultyWith much difficultyUnable to do
    0123

    Modifications. This is a modified scale based on the Stanford Health Assessment Questionnaire Disability Scale. The following changes have been made:

    • Item 2 replaces “shampoo your hair.”
    • Item 5 has been added.
    • In Item 6, “food” replaces “meat.”
    • Items 8 and 9 replace one item, “walk outdoors on flat ground.”
    • Item 11 has been added.
    • Items 17 and 20 are reworded slightly.
    • Item 21 replaces “run errands and shop.”
    • Item 22 has been added.
    • “Open car doors” has been deleted.
    • “Get in and out of a car” has been deleted.

    Scoring. There are two ways to score this scale:

    • Score each item independently, such that the score is the mean of the 22 items. If more than 6 questions (or 25%) are missing answers, set the value of the score for this scale to missing. Scores range from 0 to 3, with a higher score indicating more disability.
    • First, score within each category; there are eight categories of items:
      • “Dressing and Grooming” includes Items 1 and 2.
      • “Arising” includes Items 3, 4, and 5.
      • “Eating” includes Items 6 and 7.
      • “Walking” includes Items 8, 9, 10, and 11.
      • “Hygiene” includes Items 12, 13, and 14.
      • “Reach” includes Items 15 and 16.
      • “Grip” includes Items 17 and 18.
      • “Activities” includes Items 19, 20, 21, and 22.

    The score for each category is the response that indicates the greatest degree of difficulty for the items in that category. For example, in the “Dressing and Grooming” category there are responses for two items. If Item 1 (“dress yoursel”) is marked as “1” and Item 2 (“brush/comb your hair”) is marked as “3,” then the score for the “Dressing and Grooming” category would be “3,” the response indicating the greatest difficulty within that category.

    The scale score is the mean of the eight categorical scores. If more than two (or 25%) of the eight categories are missing, set the value of the score for this scale to missing. If fewer than two are missing, then divide the sum of categories by number of existing categories. Scores range from 0 to 3, with a higher score indicating more disability.

    Social/Role Activities Limitations

    During the past 4 weeks, how much … (circle one):

    Not at all confidentSlightlyModeratelyQuite a bitAlmost totally
    01234
    • Has your health interfered with your normal social activities with family, friends, neighbors, or groups?
    • Has your health interfered with your hobbies or recreational activities?
    • Has your health interfered with your household chores?
    • Has your health interfered with your errands and shopping?

    Scoring. Score is the mean of the four items. If more than one item is missing, set the value of the score for this scale to missing. Scores range from 0 to 4, with a higher score indicating greater limitation in activities.

    Pain and Physical Discomfort
    • Please circle the one number that best describes your physical discomfort or pain on the average over the past 4 weeks:
      None1234567891011121314151617181920As bad as you can imagine
    • Please circle the one number that best describes your physical discomfort or pain at its worst over the past 4 weeks:
      None1234567891011121314151617181920As bad as you can imagine
    • During the past 4 weeks, how often have you had physical discomfort or pain? (If you have had more than one discomfort or pain, answer by describing your feelings of discomfort or pain in general.) (circle one):

    • How much bodily discomfort or pain have you generally had during the past 4 weeks? (circle one):

    • When you had physical discomfort or pain during the past 4 weeks, how long did it usually last? (If you have had more than one discomfort or pain, answer by describing your feelings of discomfort or pain in general (circle one):

    Modifications. This is a modified version of the MOS pain severity scale, which was changed to omit the skip pattern and add “physical discomfort” to the item stems.

    Note: A validated Spanish translation of this measure can be found in Appendix F.

    Scoring. To score, first transform each of the five items into a 0 to 100 scale (100 indicating more pain/discomfort), then calculate the mean of the five transformed items. If more than two items are missing, set the value of the score for this scale to missing. Scores range from 0 to 100, with a higher score indicating more pain or physical discomfort.

    Energy/Fatigue

    These questions are about how you feel and how things have been with you during the past month. (For each question, please circle one number for each question that comes closest to the way you have been feeling.)

    How much time during the past 4 weeks

    None of the timeA little of the timeSome of the timeA good bit of the timeMost of the timeAll of the time
    012345
    • Did you feel worn out?
    • Did you have a lot of energy?
    • Did you feel tired?
    • Did you have enough energy to do the things you wanted to do?
    • Did you feel full of pep?

    Scoring. Items 1 and 3 are reversed as indicated below:

    None of the timeA little of the timeSome of the timeA good bit of the timeMost of the timeAll of the time
    543210

    Items 2, 4, and 5 remain unchanged as indicated below:

    None of the timeA little of the timeSome of the timeA good bit of the timeMost of the timeAll of the time
    012345

    Reverse Items 1 and 3, then take the mean of the five items. If more than two items are missing, set the value of the score for this scale to missing. Scores range from 0 to 5, with a higher score indicating more energy.

    To minimize the number of response sets, items are usually scrambled among other items using the same response categories. This includes items from depression, mental health, and health distress scales.

    Bibliography
    Stewart, A. L., Hays, R. D., & Ware, J. E., Jr. (1992). Health perceptions, energy/fatigue, and health distress measures. In A. L.Stewart & J. E.Ware, Jr. (Eds.), Measuring functioning and well-being: The Medical Outcomes Study approach (pp. 143–172). Durham, NC: Duke University Press.
    Shortness of Breath

    During the past 4 weeks, how much have you been troubled by shortness of breath when doing your normal daily activities? (circle one):

    Scoring. Score is the value of the single item only. Scores range from 0 to 4, with a higher score indicating more shortness of breath.

    Psychological Well-Being/Distress (MOS Mental Health Index III [MHI5])

    These questions are about how you feel and how things have been with you during the past month. (For each question, please circle one number for each question that comes closest to the way you have been feeling.)

    How much time during the past 4 weeks

    None of the timeA little of the timeSome of the timeA good bit of the timeMost of the timeAll of the time
    012345
    • Have you been a very nervous person?
    • Have you felt downhearted and blue?
    • Have you felt so down in the dumps that nothing could cheer you up?
    • Have you felt calm and peaceful?
    • Have you been a happy person?

    Scoring. Items 1, 2, and 3 are reversed as indicated below:

    None of the timeA little of the timeSome of the timeA good bit of the timeMost of the timeAll of the time
    543210

    Items 4 and 5 remain unchanged as indicated below:

    None of the timeA little of the timeSome of the timeA good bit of the timeMost of the timeAll of the time
    012345

    First reverse Items 1, 2, and 3, then take the mean of the five items. If more than two items are missing, set the value of the score for this scale to missing. Scores range from 0 to 5, with a higher score indicating better psychological well-being.

    To minimize the number of response sets, items are usually scrambled among other items using the same response categories. This includes items from the depression, health distress, and energy/fatigue scales.

    Bibliography
    Stewart, A. L., Ware, J. E., Jr., Sherbourne, C. D., & Wells, K. B. (1992). Psychological distress/well-being and cognitive functioning measures. In A. L.Stewart & J. E.Ware, Jr., Measuring functioning and well-being: The Medical Outcomes Study approach (pp. 102–142). Durham, NC: Duke University Press.
    Depressive Symptoms (MOS Depression/Behavior-Emotional Control)

    These questions are about how you feel and how things have been with you during the past month. (For each question, please circle one number for each question that comes closest to the way you have been feeling.)

    How much time during the past 4 weeks

    None of the timeA little of the timeSome of the timeA good bit of the timeMost of the timeAll of the time
    012345
    • Did you feel depressed?
    • Have you been in firm control of your behavior, thoughts, emotions, and feelings?
    • Did you feel that you had nothing to look forward to?
    • Have you felt emotionally stable?
    • Have you felt downhearted and blue?
    • Have you been moody or brooded about things?
    • Have you been in low or very low spirits?
    • Have you felt so down in the dumps that nothing could cheer you up?

    Scoring. Items 2 and 4 are reversed as indicated below:

    None of the timeA little of the timeSome of the timeA good bit of the timeMost of the timeAll of the time
    543210

    All other items remain unchanged as indicated below:

    None of the timeA little of the timeSome of the timeA good bit of the timeMost of the timeAll of the time
    012345

    First reverse Items 2 and 4, then take the mean of the eight items. If more than two items are missing, set the value of the score for this scale to missing. Scores range from 0 to 5, with a higher score indicating more depression.

    To minimize the number of response sets, items are usually scrambled among other items using the same response categories. This includes items from mental health, health distress, and energy/fatigue scales.

    Bibliography
    Stewart, A. L., Ware, J. E., Jr., Sherbourne, C. D., & Wells, K. B. (1992). Psychological distress/well-being and cognitive functioning measures. In A. L.Stewart & J. E.Ware, Jr. (Eds.), Measuring functioning and well-being: The Medical Outcomes Study approach (pp. 102–142). Durham, NC: Duke University Press.
    Health Distress

    These questions are about how you feel and how things have been with you during the past month. (For each question, please circle one number for each question that comes closest to the way you have been feeling.)

    How much time during the past 4 weeks

    None of the timeA little of the timeSome of the timeA good bit of the timeMost of the timeAll of the time
    012345
    • Were you discouraged by your health problems?
    • Were you fearful about your future health?
    • Was your health a worry in your life?
    • Were you frustrated by your health problems?

    Modifications. This is a modified version of the MOS health distress scale. Only four of six items were used, and the wording of two items was changed. The item “Were you afraid because of your health” was changed to “Were you fearful about your future health,” and the item “Were you frustrated about your health” was changed to “Were you frustrated by your health problems.”

    Scoring. The score is the mean of these four items. If more than one item is missing, set the value of the score for this scale to missing. Scores range from 0 to 5, with a higher score indicating more distress about health.

    To minimize the number of response sets, items are usually scrambled among other items using the same response categories. This includes items from depression, mental health, and energy/fatigue scales.

    Bibliography
    Stewart, A. L., Hays, R. D., & Ware, J. E., Jr. (1992). Health perceptions, energy/fatigue, and health distress measures. In A. L.Stewart & J. E.Ware, Jr. (Eds.), Measuring functioning and well-being: The Medical Outcomes Study approach (pp. 143–172). Durham, NC: Duke University Press.
    Self-Rated Health

    In general, would you say your health is … (circle one):

    Note: A validated Spanish translation of this measure can be found in Appendix F.

    Scoring. Score is the value of the single item only. Scores range from 0 to 5, with a higher score indicating poorer health.

    Bibliography
    Idler, E. L., & Angel, R. J. (1990). Self-rated health and mortality in the NHANES-I epidemiologic follow-up study. American Journal of Public Health, 80, 446–452. http://dx.doi.org/10.2105/AJPH.80.4.446
    Schoenfeld, D. E., Malmrose, L. C., Blazer, D. G., Gold, D. T., & Seeman, T. E. (1994). Self-rated health and mortality in the high-functioning elderly: A closer look at healthy individuals. MacArthur Field Study of Successful Aging. Journal of Gerontology: Medical Sciences, 49, M109–M115.
    U.S. Bureau of the Census. (1985). National Health Interview Survey. Washington, DC: U.S. Dept. of Commerce.
    Ware, J. E., Jr., Nelson, E. C., Sherbourne, C. D., & Stewart, A. L. (1992). Preliminary tests of a 6-item general health survey: A patient application. In A. L.Stewart & J. E.Ware, Jr. (Eds.), Measuring functioning and well-being: The Medical Outcomes Study approach (pp. 291–303). Durham, NC: Duke University Press.
    Wolinsky, F. D., & Johnson, R. J. (1992). Perceived health status and mortality among older men and women. Journal of Gerontology: Social Sciences, 47, S304–S312.
    Health Care Utilization
    Visits to Physicians

    During the past 6 months, did you visit any physician other than a psychiatrist? (Please fill in the blank with a “0” or other number; do not include visits while in the hospital.)

    How many visits? ___

    Scoring. The score is the count of visits.

    Visits to Mental Health Providers

    During the past 6 months, did you visit any of the following health professionals? (Please fill in the blank with a “0” or other number; do not include visits while in the hospital.)

    Scoring. The score is the sum of the count of these two variables: visits to psychiatrists and psychologists or other mental health counselors.

    Visits to Other Providers

    During the past 6 months, did you visit any of the following health professionals? (Please fill in the blank with a “0” or other number; do not include visits while in the hospital.)

    Scoring. The score is the sum of the count of these three variables: visits to nurse practitioner or physician's assistant, home health nurse and physical, occupational, or respiratory therapists.

    Visits to Emergency Room

    How many times did you visit the emergency room in the past 6 months?

    Scoring. The score is the count of times.

    Number of Hospital Stays

    How many different times did you stay in a hospital overnight or longer in the past 6 months?

    Scoring. The score is the count of times.

    Nights in Hospital

    How many total nights did you stay in a hospital overnight in the past 6 months?

    Scoring. The score is the count of nights.

    Outpatient Surgeries

    In the past 6 months, how many times did you have outpatient surgery (surgery where you did not stay overnight in the hospital)?

    Scoring. The score is the count of times.

    AUTHORS' NOTE: The disability section is from “Measurement of Patient Outcomes in Arthritis,” by J. F. Fries, P. Spitz, R. G. Kraines, and H. R. Holman, 1980, Arthritis and Rheumatism, 23, pp. 137–145. Copyright 1980 by James F. Fries. Adapted with permission.

    AUTHORS' NOTE: The pain and physical discomfort section is from Measuring Functioning and Well-Being: The Medical Outcomes Study Approach, edited by Anita L. Stewart and John E. Ware, Jr., pp. 373–403. Copyright 1992, RAND Corporation. Reprinted with permission from Duke University Press.

    AUTHORS' NOTE: The energy/fatigue section is from Measuring Functioning and Well-Being: The Medical Outcomes Study Approach, edited by Anita L. Stewart & John E. Ware, Jr., pp. 373–403. Copyright 1992, RAND Coporation. Reprinted with permission from Duke University Press.

    AUTHORS' NOTE: The psychological well-being/distress section is from Measuring Functioning and Well-Being: The Medical Outcomes Study Approach, edited by Anita L. Stewart and John E. Ware, Jr., pp. 373–403. Copyright 1992, RAND Coporation. Reprinted with permission from Duke University Press.

    AUTHORS' NOTE: The depressive symptoms section is from Measuring Functioning and Well-Being: The Medical Outcomes Study Approach, edited by Anita L. Stewart and John E. Ware, Jr., pp. 373–403. Copyright 1992, RAND Corporation. Reprinted with permission from Duke University Press.

    AUTHORS' NOTE: The health distress section is from Measuring Functioning and Well-Being: The Medical Outcomes Study Approach, edited by Anita L. Stewart and John E. Ware, Jr., pp. 373–403. Copyright 1992, RAND Corporation. Reprinted with permission from Duke University Press.

    AUTHORS' NOTE: The self-rated health section is from Measuring Functioning and Well-Being: The Medical Outcomes Study Approach, edited by Anita L. Stewart and John E. Ware, Jr., pp. 373–403. Copyright 1992, RAND Corporation. Reprinted with permission from Duke University Press.

    Appendix B: Multidimensional Health Profiles

    SF-36 Health Survey (Medical Outcomes Study 36-Item Short Form)

    INSTRUCTIONS: This survey asks for your views about your health. This information will help keep track of how you feel and how well you are able to do your usual activities.

    Answer every question by marking the answer as indicated. If you are unsure about how to answer a question, please give the best answer you can.

    • In general, would you say your health is (circle one):

    • Compared to one week ago, how would you rate your health in general now?

      [Note to the reader—format the following choices as shown in #1: Much better now than one week ago = 1, Somewhat better now than one week ago = 2, About the same as one week ago = 3, Somewhat worse now than one week ago = 4, Much worse now than one week ago = 5.]

    • The following items are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much? (circle one number on each line)

    • During the past week, have you had any of the following problems with your work or other regular daily activities as a result of your physical health? (circle one number on each line)

    • During the past week, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)? (circle one number on each line)

    • During the past week, to what extent have your physical health or emotional problems interfered with your normal social activities with family, friends, neighbors, or groups?

      [Note to the reader—format the following choices as shown in #1: Not at all = 1, Slightly = 2, Moderately = 3, Quite a bit = 4, Extremely = 5]

    • How much bodily pain have you had during the past week?

      [Note to the reader—format the following choices as shown in #1: None = 1, Very mild = 2, Mild = 3, Moderate = 4, Severe = 5, Very severe = 6]

    • During the past week, how much did pain interfere with your normal work (including both work outside the home and housework)?

      [Note to the reader—format the following choices as shown in #1: Not at all = 1, A little bit = 2, Moderately = 3, Quite a bit = 4, Extremely = 5]

    • These questions are about how you feel and how things have been with you during the past week. For each question, please give the one answer that comes closest to the way you have been feeling. How much of the time during the past week … (circle one number on each line)

    • During the past week, how much of the time has your physical health or emotional problems interfered with your social activities (like visiting with friends, relatives, etc.)?

      [Note to the reader—format the following choices as shown in #1: All of the time = 1, Most of the time = 2, Some of the time = 3, A little of the time = 4, None of the time = 5]

    • How TRUE or FALSE is each of the following statements for you? (circle one number on each line)

    Scoring. The SF-36 has eight subscales: Physical Functioning, Role Limitations Due to Physical Problems, Social Functioning, Bodily Pain, General Mental Health, Role Limitations Due to Emotional Problems, Vitality, and General Health Perceptions. In addition, there is a single-item measure for Reported Health Transition. Scores for each subscale are the sum of the scores for the questions within the subscale. Higher scores mean better health state.

    The scores for some questions (1, 6, 7, 8, 9a, 9d, 9e, 9h, 11b, 11d) must be reversed before being calculated. (For example, 1 = 6, 6 = 1, 2 = 5, 5 = 2, 3 = 4, 4 = 3)

    Subscales are made up of the following items:

    The single-item Reported Health Transition is Item 2 (reverse).

    If you wish to compare your MOS results with those in other studies using the MOS, you will need to transform the scales. For information on transforming the scales, as well as the handling of missing data, contact the Medical Outcomes Trust, 20 Park Plaza, Suite 1014, Boston, MA 02116–4313 (telephone: 617–426–4046).

    Bibliography
    McHorney, C. A., Ware, J. E., Jr., & Raczek, A. E. (1993). The MOS 36-item short-form health survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Medical Care, 31(3), 247–263. http://dx.doi.org/10.1097/00005650-199303000-00006
    McHorney, C. A., Ware, J. E., Jr., Rogers, W., Raczek, A. E., & Rachel Lu, J. F. (1992). The validity and relative precision of MOS short- and long-form health status scales and Dartmouth COOP charts. Medical Care, 30(Suppl.), MS253–265.
    Stewart, A. L., & Ware, J. E., Jr. (1992). Measuring functioning and well-being: The Medical Outcomes Study approach. Durham, NC: Duke University Press.
    Ware, J. E., Jr., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). Medical Care, 30(6), 473–483. http://dx.doi.org/10.1097/00005650-199206000-00002
    Illness Intrusiveness Ratings Scale

    The following items ask about how much your illness and/or its treatment interfere with different aspects of your life. PLEASE CIRCLE THE ONE NUMBER THAT BEST DESCRIBES YOUR CURRENT LIFE SITUATION. If an item is not applicable, please circle the number one (1) to indicate that this aspect of your life is not affected very much. Please do not leave any item unanswered. Thank you.

    How much does your illness and/or its treatment interfere with your …

    Not very much1234567Very much
    • Health
    • Diet (i.e., the things you eat and drink)
    • Work
    • Active recreation (e.g., sports)
    • Passive recreation (e.g., reading, listening to music)
    • Financial situation
    • Relationship with your spouse (girlfriend or boyfriend if not married)
    • Sex life
    • Family relations
    • Other social relations
    • Self-expression/self-improvement
    • Religious expression
    • Community and civic involvement

    [Use the same response categories for each question.]

    Scoring

    The Illness Intrusiveness Scale has five subscales:

    Physical Well-Being and DietItems 1 and 2
    Work and FinancesItems 3 and 6
    Marital, Sexual, and Family RelationsItems 7, 8, and 9
    Recreation and Social RelationsItems 4, 5, and 10
    Other Aspects of LifeItems 11, 12, and 13

    Average the item scores within each subscale for subscale scores, then average the subscale scores to correct for differences in the numbers of items combined. You may also sum the individual items to generate a total Perceived Intrusiveness score.

    AUTHORS' NOTE: Illness Intrusiveness Ratings Scale, by Gerald M. Devins, 1981. Copyright 1981 by Gerald M. Devins, Ph.D. Reprinted with permission.

    AUTHORS' NOTE: SF-36 Health Survey, Copyright © 1992 Medical Outcomes Trust. All Rights Reserved. Reproduced with permission of the Medical Outcomes Trust.

    Bibliography
    Devins, G. M, Binik, Y. M., Hutchinson, T. A., Hollomby, D. J., Barré, P. E., & Guttmann, R. D. (1983). The emotional impact of end-stage renal disease: Importance of patients' perceptions of intrusiveness and control. International Journal of Psychiatry in Medicine, 13(4), 327–343. http://dx.doi.org/10.2190/5DCP-25BV-U1G9-9G7C
    Devins, G. M., Mandin, H., Hons, R. B., Burgess, E. D., Klassen, J., Taub, K., Schorr, S., Letourneau, P. K., & Buckle, S. (1990). Illness intrusiveness and quality of life in end-stage renal disease: Comparison and stability across treatment modalities. Health Psychology, 9(2), 117–142. http://dx.doi.org/10.1037/0278-6133.9.2.117

    Appendix C: Measures of Individual Health Constructs

    Measures of Global Health and Quality of Life
    General Health Visual Analogue Scale (VAS)

    Please mark an “X” on the line below to describe your general health in the recent past.

    Scoring. Measure in centimeters with ruler, “10” being “Poor health” and “0” being “Excellent health.” Enter the number where the middle of the “X” is located. Enter whole numbers, not decimals. If the “X” is between centimeters, round down if below 0.5, round up if 0.5 and above, and if exactly at 0.5, round to the nearest even number.

    NOTE: The line must be exactly 10 cm long. When reproducing, make sure your printer or copy machine reproduces at exactly 100%. You cannot have a reliable measurement if the line is not exactly the same length each time. A small, clear, plastic ruler will make it easier to see the scoring point. Make sure all scoring is done with identical rulers.

    Bibliography
    Carlsson, A. M. (1983). Assessment of chronic pain. I. Aspects of the reliability and validity of the visual analogue scale. Pain, 16, 87–101. http://dx.doi.org/10.1016/0304-3959%2883%2990088-X
    Dixon, J. S., & Bird, H. A. (1981). Reproducibility along a 10 cm vertical visual analogue scale. Annals of the Rheumatic Diseases, 40, 87–89. http://dx.doi.org/10.1136/ard.40.1.87
    Downie, W. W., Leatham, P. A., Rhind, V. A., Pickup, M. E., & Wright, V. (1978). The visual analogue scale in the assessment of grip strength. Annals of the Rheumatic Diseases, 37, 382–384. http://dx.doi.org/10.1136/ard.37.4.382
    Downie, W. W., Leatham, P. A., Rhind, V. A., Wright, V., Branco, J. A., & Anderson, J. A. (1978). Studies with pain rating scales. Annals of the Rheumatic Diseases, 37, 378–381. http://dx.doi.org/10.1136/ard.37.4.378
    Jacobsen, M. (1965). The use of rating scales in clinical research. British Journal of Psychiatry, 3, 545–546.
    Scott, J., & Huskisson, E. C. (1976). Graphic representation of pain. Pain, 2, 175–184. http://dx.doi.org/10.1016/0304-3959%2876%2990113-5
    Scott, P. J., & Huskisson, E. C. (1977). Measurement of functional capacity with visual analogue scales. Rheumatology and Rehabilitation, 16, 257–259. http://dx.doi.org/10.1093/rheumatology/16.4.257
    Self-Rated Health

    In general, would you say your health is (circle one):

    For scoring and references, see Appendix A.

    Quality of Life Visual Analogue Scale (VAS)

    Take a moment and think of the best possible life and the worst possible life. Now, on the line below, place an “X” to indicate where your life is now:

    Scoring. Measure in centimeters with ruler, “10” being “Worst possible life,” and “0” being “Best possible life.” Enter the number where the middle of the “X” is located. Enter whole numbers, not decimals. If the “X” is between centimeters, round down if below 0.5, round up if 0.5 and above, and if exactly at 0.5, round to the nearest even number.

    Note: The line must be exactly 10 cm long. When reproducing, make sure your printer or copy machine reproduces at exactly 100%. You cannot have a reliable measurement if the line is not exactly the same length each time. A small, clear, plastic ruler will make it easier to see the scoring point. Make sure all scoring is done with identical rulers.

    Bibliography
    Carlsson, A. M. (1983). Assessment of chronic pain. I. Aspects of the reliability and validity of the visual analogue scale. Pain, 16, 87–101. http://dx.doi.org/10.1016/0304-3959%2883%2990088-X
    Dixon, J. S., & Bird, H. A. (1981). Reproducibility along a 10 cm vertical visual analogue scale. Annals of the Rheumatic Diseases, 40, 87–89. http://dx.doi.org/10.1136/ard.40.1.87
    Downie, W. W., Leatham, P. A., Rhind, V. A., Pickup, M. E., & Wright, V. (1978). The visual analogue scale in the assessment of grip strength. Annals of the Rheumatic Diseases, 37, 382–384. http://dx.doi.org/10.1136/ard.37.4.382
    Downie, W. W., Leatham, P. A., Rhind, V. A., Wright, V., Branco, J. A., & Anderson, J. A. (1978). Studies with pain rating scales. Annals of the Rheumatic Diseases, 37, 378–381. http://dx.doi.org/10.1136/ard.37.4.378
    Jacobsen, M. (1965). The use of rating scales in clinical research. British Journal of Psychiatry, 3, 545–546.
    Scott, J., & Huskisson, E. C. (1976). Graphic representation of pain. Pain, 2, 175–184. http://dx.doi.org/10.1016/0304-3959%2876%2990113-5
    Scott, P. J., & Huskisson, E. C. (1977). Measurement of functional capacity with visual analogue scales. Rheumatology and Rehabilitation, 16, 257–259. http://dx.doi.org/10.1093/rheumatology/16.4.257
    Measures of Function
    Health Assessment Questionnaire (HAQ)—Disability Section

    AUTHORS' NOTE: The HAQ disability section is from “Measurement of Patient Outcomes in Arthritis,” by J. F. Fries, P. Spitz, R. G. Kraines, and H. R. Holman, 1980, Arthritis and Rheumatism, 23, pp. 137–145. Copyright 1980 by James F. Fries. Reprinted with permission.

    Bibliography
    Ramey, D. R., Raynauld, J. P., & Fries, J. F. (1992). The Health Assessment Questionnaire 1992: Status and review. Arthritis Care and Research, 5(3), 119–129. http://dx.doi.org/10.1002/art.1790050303
    Measures of Fatigue
    Multidimensional Assessment of Fatigue (MAF)

    These questions are about fatigue and the effect of fatigue on your activities. For each of the following questions, circle the number that most closely indicates how you have been feeling during the past week.

    For example, suppose you really liked to sleep late in the mornings. You would probably circle the number closer to the “a great deal” end of the line. This is where I put it:

    To what degree do you usually like to sleep late in the mornings?

    Now please complete the following items based on the past week.

    • To what degree have you experienced fatigue? [Format same as #1, with “Not at all” and “A great deal” as anchors.]

      (If no fatigue, please go to Question 17.)

    • How severe is the fatigue which you have been experiencing? [Format same as #1, with “Mild” and “Severe” as anchors.]
    • To what degree has fatigue caused you distress? [Format same as #1, with “No distress” and “A great deal of distress” as anchors.]

    Circle the number that most closely indicates to what degree fatigue has interfered with your ability to do the following activities in the past week. For activities you don't do, for reasons other than fatigue (e.g., you don't work because you are retired), check the box.

    In the past week, to what degree has fatigue interfered with your ability to:

    • Do household chores

    • Cook
    • Bathe or wash
    • Dress
    • Work
    • Visit or socialize with friends or family
    • Engage in sexual activity
    • Engage in leisure and recreational activities
    • Shop and do errands
    • Walk
    • Exercise, other than walking
    • Over the past week, how often have you been fatigued? (circle one number)

    • To what degree has your fatigue changed during the past week?

    [Note to the reader—use the same format as #15, with 5 response categories in this order: Increased, Fatigue has gone up and down, Stayed the same, Decreased, I didn't have fatigue this past week]

    Scoring. The MAF scale contains 16 items and measures four dimensions of fatigue: severity (Items 1–2), distress (Item 3), degree of interference in activities of daily living (Items 4–15), and timing (Items 15–16).

    Do not assign a score to Items 4 through 14 for those respondents who indicated that they “Do not do activity for reasons other than fatigue.” If no fatigue on Item 1, assign a zero to Items 2 through 16. Convert Item 15 to 0-to-10 scale by multiplying each score by 2.5. Item 16 is not included in the Global Fatigue Index. To calculate the Global Fatigue Index, sum Items 1, 2, and 3; average of 4 through 14; and newly scored 15.

    Bibliography
    Belza, B. (1995). Comparison of self-reported fatigue in rheumatoid arthritis and controls. Journal of Rheumatology, 22, 639–643.

    Note: Users of the MAF are requested to submit the following information for compilation in a database: contact (name, discipline, address, telephone, institution) and research information (study population and projected sample size, research questions driving the measurement of fatigue, and projected time line for data collection and analyses). Mail or fax to Basia Belza, Ph.D., R.N., Department of Physiological Nursing, Box 357266, University of Washington, Seattle, WA 98195–7266; fax 206–543–4711, e-mail basiab@u.washington.edu.

    Fatigue Visual Analogue Scale

    We are interested in learning whether or not you are affected by fatigue because of your illness. Please mark an “X” on the line below to describe your fatigue in the past 2 weeks:

    Scoring. Measure in centimeters with ruler, “10” being “Extreme fatigue” and “0” being “No fatigue.” Enter the number where the middle of the “X” is located. Enter whole numbers, not decimals. If the “X” is between centimeters, round down if below 0.5, round up if 0.5 and above, and if exactly at 0.5, round to the nearest even number.

    Note: The line must be exactly 10 cm long. When reproducing, make sure your printer or copy machine reproduces at exactly 100%. You cannot have a reliable measurement if the line is not exactly the same length each time. A small, clear, plastic ruler will make it easier to see the scoring point. Make sure all scoring is done with identical rulers.

    Bibliography
    Carlsson, A. M. (1983). Assessment of chronic pain. I. Aspects of the reliability and validity of the visual analogue scale. Pain, 16, 87–101. http://dx.doi.org/10.1016/0304-3959%2883%2990088-X
    Dixon, J. S., & Bird, H. A. (1981). Reproducibility along a 10 cm vertical visual analogue scale. Annals of the Rheumatic Diseases, 40, 87–89. http://dx.doi.org/10.1136/ard.40.1.87
    Downie, W. W., Leatham, P. A., Rhind, V. A., Pickup, M. E., & Wright, V. (1978). The visual analogue scale in the assessment of grip strength. Annals of the Rheumatic Diseases, 37, 382–384. http://dx.doi.org/10.1136/ard.37.4.382
    Downie, W. W., Leatham, P. A., Rhind, V. A., Wright, V., Branco, J. A., & Anderson, J. A. (1978). Studies with pain rating scales. Annals of the Rheumatic Diseases, 37, 378–381. http://dx.doi.org/10.1136/ard.37.4.378
    Jacobsen, M. (1965). The use of rating scales in clinical research. British Journal of Psychiatry, 3, 545–546.
    Scott, J., & Huskisson, E. C. (1976). Graphic representation of pain. Pain, 2, 175–184. http://dx.doi.org/10.1016/0304-3959%2876%2990113-5
    Scott, P. J., & Huskisson, E. C. (1977). Measurement of functional capacity with visual analogue scales. Rheumatology and Rehabilitation, 16, 257–259. http://dx.doi.org/10.1093/rheumatology/16.4.257
    Measures of Pain
    Gracely Pain
    • Pick the word that best describes the intensity of the strength of your pain in the past 7 days.
      • ▪Extremely intense
      • ▪Very intense
      • ▪Intense
      • ▪Strong
      • ▪Slightly intense
      • ▪Barely strong
      • ▪Moderate
      • ▪Mild
      • ▪Very mild
      • ▪Weak
      • ▪Very weak
      • ▪Faint
    • Pick the word that best describes how bad your pain has been in the past 7 days.
      • ▪Very intolerable
      • ▪Intolerable
      • ▪Very distressing
      • ▪Slightly intolerable
      • ▪Very annoying
      • ▪Distressing
      • ▪Very unpleasant
      • ▪Slightly distressing
      • ▪Annoying
      • ▪Unpleasant
      • ▪Slightly annoying
      • ▪Slightly unpleasant

    Scoring. Gracely descriptors are assigned relative magnitude values. Scoring is as follows:

    Bibliography
    Gracely, R. H., Dubner, R., & McGrath, P. (1979). Narcotic analgesia: Fentanyl reduces the intensity but not the unpleasantness of painful tooth pulp sensations. Science, 203, 1261–1263. http://dx.doi.org/10.1126/science.424753
    Pain Visual Analogue Scale (VAS)

    We are interested in learning whether or not you are affected by pain because of your illness. Please mark an “X” on the line below to describe your pain in the past 2 weeks:

    Scoring. Measure in centimeters with ruler, “10” being “Pain as bad as can be” and “0” being “No pain.” Enter the number where the middle of the “X” is located. Enter whole numbers, not decimals. If the “X” is between centimeters, round down if below 0.5, round up if 0.5 and above, and if exactly at 0.5, round to the nearest even number.

    Note: The line must be exactly 10 cm long. When reproducing, make sure your printer or copy machine reproduces at exactly 100%. You cannot have a reliable measurement if the line is not exactly the same length each time. A small, clear, plastic ruler will make it easier to see the scoring point. Make sure all scoring is done with identical rulers.

    Bibliography
    Carlsson, A. M. (1983). Assessment of chronic pain. I. Aspects of the reliability and validity of the visual analogue scale. Pain, 16, 87–101. http://dx.doi.org/10.1016/0304-3959%2883%2990088-X
    Dixon, J. S., & Bird, H. A. (1981). Reproducibility along a 10 cm vertical visual analogue scale. Annals of the Rheumatic Diseases, 40, 87–89. http://dx.doi.org/10.1136/ard.40.1.87
    Downie, W. W., Leatham, P. A., Rhind, V. A., Pickup, M. E., & Wright, V. (1978). The visual analogue scale in the assessment of grip strength. Annals of the Rheumatic Diseases, 37, 382–384. http://dx.doi.org/10.1136/ard.37.4.382
    Downie, W. W., Leatham, P. A., Rhind, V. A., Wright, V., Branco, J. A., & Anderson, J. A. (1978). Studies with pain rating scales. Annals of the Rheumatic Diseases, 37, 378–381. http://dx.doi.org/10.1136/ard.37.4.378
    Jacobsen, M. (1965). The use of rating scales in clinical research. British Journal of Psychiatry, 3, 545–546.
    Scott, J., & Huskisson, E. C. (1976). Graphic representation of pain. Pain, 2, 175–184. http://dx.doi.org/10.1016/0304-3959%2876%2990113-5
    Scott, P. J., & Huskisson, E. C. (1977). Measurement of functional capacity with visual analogue scales. Rheumatology and Rehabilitation, 16, 257–259. http://dx.doi.org/10.1093/rheumatology/16.4.257
    Measures of Depression
    Center for Epidemiologic Studies Depression (CES-D)

    Below is a list of some of the ways you may have felt or behaved. Please indicate how often you have felt this way during the past week by checking (✓) the appropriate space.

    • I was bothered by things that usually don't bother me.
    • I did not feel like eating; my appetite was poor.
    • I felt that I could not shake off the blues even with help from my family.
    • I felt that I was just as good as other people.
    • I had trouble keeping my mind on what I was doing.
    • I felt depressed.
    • I felt that everything I did was an effort.
    • I felt hopeful about the future.
    • I thought my life had been a failure.
    • I felt fearful.
    • My sleep was restless.
    • I was happy.
    • I talked less than usual.
    • I felt lonely.
    • People were unfriendly.
    • I enjoyed life.
    • I had crying spells.
    • I felt sad.
    • I felt that people disliked me.
    • I could not get “going.”

    Scoring

    Score is the sum of the 20 item weights. Possible range is 0 to 60. If more than four questions are missing answers, do not score the CES-D. A score of 16 or more is considered depressed.

    Bibliography
    Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, I, 385–401.

    AUTHORS' NOTE: The MAF is from “Correlates of Fatigue in Older Adults With Rheumatoid Arthritis.” Copyright 1993, The American Journal of Nursing Company. Reprinted from Nursing Research, March/April, 1993. Used with permission. All rights reserved.

    AUTHORS' NOTE: The Gracely pain scales are from “Ratio Scales of Sensory and Affective Verbal Pain Descriptors,” by R. H. Gracely, P. McGrath, and R. Dubner, 1978, Pain, 5, pp. 5–18. Copyright 1978 by R. H. Gracely. Reprinted with permission.

    Appendix D: Measures of Health Behaviors

    Medication-Taking Measures
    Self-Reported Medication-Taking Scale

    Please circle “Yes” or “No” for each question:

    Scoring. This scale is designed to test medication compliance. To score, code “Yes” = 0, “No” = 1. The sum of the answers is the score. A score of 4 is considered high compliance, 3 is moderate compliance, and 2 or less is low compliance.

    Coping Measures
    Coping Strategies Questionnaire

    Individuals who experience pain have developed a number of ways to cope, or deal with, their pain. These include saying things to themselves when they experience pain, engaging in different activities. Below are a list of things that patients have reported doing when they feel pain. For each activity, I want you to indicate, using the scale below, how much you engage in the activity when you feel pain, where a “0” indicates you never do that when you are experiencing pain, and a “6” indicates you always do it when you are experiencing pain. Remember, you can use any point along the scale.

    Based on all the things you do to cope, or deal with, your pain, on an average day, how much control do you feel you have over it? Please circle the appropriate number. Remember, you can circle any number along the scale.

    Based on all the things you do to cope, or deal with, your pain, on an average day, how much are you able to decrease it? Please circle the appropriate number. Remember, you can circle any number along the scale.

    Scoring. The Coping Strategies Questionnaire has seven subscales, with six items in each subscale, and two single-item effectiveness ratings. To score each subscale, sum the items in each subscale. The higher the score, the more the coping strategy represented by the subscale is used.

    The subscales are made up of the following items:

    Single-item effectiveness ratings are control over pain and ability to decrease pain (last two items).

    AUTHORS' NOTE: The self-reported medication-taking scale is from “Concurrent and Predictive Validity of a Self-Reported Measure of Medication Adherence,” by D. E. Morisky, L. W. Green, & D. M. Levine, 1986, Medical Care, 24(1), pp. 67–74. Copyright 1986 by J. B. Lippincott Co. Reprinted with permission.

    AUTHORS' NOTE: The coping strategies questionnaire is from “The Use of Coping Strategies in Chronic Low Back Pain Patients: Relationship to Patient Characteristics and Current Adjustment,” by A. K. Rosenstiel and F. J. Keefe, 1983, Pain, 17, pp. 33–44. Copyright 1983 by Anne Rosenstiel-Gross. Reprinted with permission.

    Appendix E: Patient Satisfaction Measures

    Picker Ambulatory Care Patient Interview

    Following are sample questions from the Picker Ambulatory Care Patient Interview. For information about the entire instrument and its scoring, as well as other instruments and workshops developed by the Picker Institute, write to the Picker Institute, 1295 Boylston Street, Suite 100, Boston, MA 02215. This ambulatory care patient interview is from The Picker Ambulatory Care Patient Interview, by Margaret Gerteis. Copyright by Margaret Gerteis. Reprinted with permission.

    Sample Questions

    ACCESS:

    • ▪Were you able to get an appointment as soon as you wanted?
    • ▪If you needed medical advice or help right away, were you able to talk to someone as soon as you needed to?

    RESPECT FOR PATIENT PREFERENCES:

    • ▪Did your provider listen to what you had to say?
    • ▪Were you involved in decisions about your care as much as you wanted?

    INFORMATION AND EDUCATION:

    • ▪Did you get as much information about your condition and treatment as you wanted from your provider?
    • ▪Did your provider explain why you needed tests in a way you could understand?
    • ▪When you asked questions, did you get answers you could understand?

    EMOTIONAL SUPPORT:

    • ▪Did you have concerns that you wanted to discuss but did not?
    • ▪Did you have confidence and trust in the provider treating you?
    • ▪Did your provider ask you about how your family or living situation might affect your health?

    COORDINATION AND CONTINUITY OF CARE:

    • ▪Did your provider explain what to do if problems or symptoms continued, got worse, or came back?
    • ▪Did you have any follow-up visits that you thought could have been avoided by better coordination?
    • ▪Was there ever a time when you thought your doctors did not talk to each other enough about your care?
    • ▪If you were referred to a specialist, did the specialist have the information he/she needed from your medical records?

    Scoring. Survey results are reported as problem scores, which are the proportion of patients reporting problems with particular aspects of care. For example, if the patient answers “no” to the question “Did your provider listen to what you had to say?” this is counted as a problem response. The survey includes questions designed to elicit reports about what happened, in addition to questions asking about the patient's satisfaction with care.

    Group Health Association of America (GHAA) Consumer Satisfaction Survey
    Your Health Care

    Thinking about your own health care, how would you rate the following? (circle one number on each line)

    OVERALL

    • Overall, how would you evaluate health care at [plan]?

    ACCESS: Arranging for and Getting Care

    • Convenience of location of the doctor's office
    • Hours when the doctor's office is open
    • Access to specialty care if you need it
    • Access to hospital care if you need it
    • Access to medical care in an emergency
    • Arrangements for making appointments for medical care by phone
    • Length of time spent waiting at the office to see the doctor
    • Length of time you wait between making an appointment for routine care and the day of your visit
    • Availability of medical information or advice by phone
    • Access to medical care whenever you need it
    • Services available for getting prescriptions filled

    FINANCES

    • Protection you have against hardship due to medical expenses
    • Arrangements for you to get the medical care you need without financial problems

    TECHNICAL QUALITY

    • Thoroughness of examinations and accuracy of diagnosis
    • Skill, experience, and training of doctors
    • Thoroughness of treatment

    COMMUNICATION

    • Explanations of medical procedures and tests
    • Attention given to what you have to say
    • Advice you get about ways to avoid illness and stay healthy

    CHOICE AND CONTINUITY

    • Number of doctors you have to choose from
    • Arrangements for choosing a personal doctor
    • Ease of seeing the doctor of your choice

    INTERPERSONAL CARE

    • Friendliness and courtesy shown to you by your doctors
    • Personal interest in you and your medical problems
    • Respect shown to you, attention to your privacy
    • Reassurance and support offered to you by your doctors and staff
    • Friendliness and courtesy shown to you by staff
    • Amount of time you have with doctors and staff during a visit

    OUTCOMES

    • The outcomes of your medical care, how much you are helped
    • Overall quality of care and services
    Attitudes toward Care

    Below are some things people say about their medical care. Please read each one carefully, keeping in mind your health care plan. Although the statements may look similar, please answer each one separately. (circle one number on each line)

    • I am very satisfied with the medical care I receive
    • There are some things about the medical care I receive that could be better
    • The medical care I have been receiving is just about perfect
    • I am dissatisfied with some things about the medical care I receive

    Scoring. For all items except 32 and 34, score as the number circled. Reverse the responses for Items 32 and 34. By using the above scoring, all items and scales are scored with the higher ratings being best.

    You have a choice of using the scores for the individual items or to cluster items (as they are in the questionnaire) into a scale (Access, Finances, Technical Quality, Communication, Choice and Continuity, Interpersonal Care, and Attitudes Toward Care). To score a scale add the score of all the items and divide by the number of items in the scale. This will give you the mean or average scale score.

    Missing Data: If half or more of the items are missing, consider the whole scale as missing. Do not count missing items when you are figuring a scale score.

    Please note: The complete GHAA Consumer Satisfaction Survey contains a number of additional scales for rating one's health insurance plan. The reference for the complete GHAA's Consumer Satisfaction Survey and User's Manual (2nd ed.) can be obtained from the Group Health Association of America Inc., Department of Research and Analysis, 1129 Twentieth St. NW, Suite 600, Washington, DC 20036.

    AUTHORS' NOTE: The Consumer Satisfaction Survey is from GHAA's Consumer Satisfaction Survey and User's Manual (2nd ed.), by A. R. Davies and J. E. Ware, 1991, Washington, DC: Group Health Association of America Inc., Department of Research and Analysis. Copyright 1991 by the Group Health Association of America Inc. Reprinted with permission.

    Appendix F: Selected Spanish Language Scales

    Self-Rated Health

    The following is the Spanish translation of the Self-Rated Health measure found in Appendix A.

    1. Generalmente, Ud. diría que su salud es (Por favor, marque solamente una respuesta.)

    For scoring information and selected references, refer to Appendix A.

    MOS Pain Severity Scale

    The following is the Spanish translation of the MOS Pain Severity Scale found in Appendix A. This Spanish translation omits the words physical discomfort from the item stems and substitutes a 0 to 10 scale of numbered histograms for the original 0 to 20 numeric scale in Items 1 and 2.

    1. Por favor marque en la escala el número que mejor describa la intensidad de su dolor en PROMEDIO durante la última semana:

    2. Por favor marque en la escala el número que mejor describa la intensidad de su PEOR dolor durante la última semana:

    3. Durante la última semana, ¿ con qué frecuencia (o qué tan seguido) ha tenido Ud. dolor? (Si ha tenido distintos tipos de dolor, conteste describiendo sus sentimientos de dolor en general.)

    4. ¿Cómo describiría usted su dolor del cuerpo durante la última semana?

    5. Cuando tuvo dolor durante la última semana, ¿cuánto tiempo duró normalmente? (Si ha tenido distintos tipos de dolor, conteste describiendo sus sentimientos de dolor en general.)

    For scoring information and selected references, refer to Appendix A.

    Pain Visual Analogue Scale (VAS)

    This is the Spanish translation of the Visual Analogue Pain Scale described in Appendix C. This translation has been slightly modified to read “describe your arthritis pain in the last week,” rather then “describe your pain in the past 2 weeks.”

    1. Estamos interesados en aprender si Ud. está afectado por el dolor a causa de su enfermedad. Por favor marque con una “X” en la línea de abajo para describir su dolor de artritis en la última semana.

    For scoring information and selected references, refer to Appendix C.

    Modified Visual Numeric Pain Scale

    This scale is a modified version of the visual analogue scale for pain developed for the Spanish Arthritis Self-Management Study. The changes include the use of a 0 to 10 numbered scale of histograms instead of the 10-cm line, as well as the additional wording “intensity of your arthritis pain during the last week.”

    1. Por favor marque en la escala de abajo el número que mejor describa la intensidad de su dolor de artritis durante la última semana:

    (Please mark on the scale below the one number that best describes the intensity of your arthritis pain during the last week.)

    Scoring. The score is the number circled or histogram marked. Scores range from 0 to 10, with a higher score indicating more pain.

    Bibliography
    González, V. M., Stewart, A., Ritter, P., & Lorig, K. (1995). Translation and validation of arthritis outcome measures into Spanish. Arthritis and Rheumatism, 38, 1429–1446.
    Health Assessment Questionnaire (HAQ)

    This is the Spanish translation of the Health Assessment Questionnaire (HAQ) Disability Scale found in Appendix C.

    Format of First Page

    Format of Second Page

    Center for Epidemiologic Studies Depression (CES-D)

    This is the Spanish translation of the CES-D found in Appendix C.

    Lea las frases de abajo que describen cómo se ha sentido o comportado usted recientemente. Por favor marque el número que representa con qué frecuencia se ha sentido de esta manera durante la última semana.

    • Me molestaron cosas que normalmente no me molestan.
    • No me sentía con ganas de comer; no tenía apetito.
    • Me sentía que no podía quitarme de encima la tristeza aún con la ayuda de mi familia.
    • Sentía que yo era tan bueno(a) como cualquier otra persona.
    • Tenía dificultad en mantener mi mente en lo que hacía.
    • Me sentía deprimido(a).
    • Sentía que todo lo que hacía era un esfuerzo.
    • Me sentía con esperanza sobre el futuro.
    • Pensé que mi vida había sido un fracaso.
    • Me sentía con miedo.
    • No podía dormir bien.
    • Estaba contento(a).
    • Hablé menos de lo usual.
    • Me sentía solo(a).
    • Pensaba que la gente no era amistosa.
    • Disfruté de la vida.
    • Pasé ratos llorando.
    • Me sentía triste.
    • Sentía que yo no le caía bien (gustaba) a la gente.
    • No tenía ganas de hacer nada.

    For scoring information and selected references, refer to Appendix C.

    Arthritis Self-Efficacy

    Below is the Spanish translation of the Arthritis Self-Efficacy (SE) scales, which were modified slightly after psychometric testing to include 6 of the 11 original items for managing pain and other symptoms; this Spanish SE scale also includes 2 new items (Items 3 and 5).

    En las siguientes preguntas nos gustaría saber cómo le afecta el dolor de la artritis y qué piensa usted de sus habilidades para controlar su artritis. En cada una de las siguientes preguntas, por favor marque el número que mejor corresponda al nivel de seguridad que siente en este momento de que puede realizar las siguientes actividades.

    (In the following questions we would like to know how your arthritis pain affects you and what you think about your abilities to control your arthritis. In each of the following questions, please mark the one number that corresponds best to your level of certainty that you can now perform the following activities.)

    • ¿Qué tan seguro(a) se siente usted de poder reducir bastante su dolor? (How certain are you that you can decrease your pain quite a bit?)

      Note to the reader: Insert this scale after each of the following questions.

    • ¿Qué tan seguro(a) se siente usted de poder evitar que el dolor de la artritis no le permita dormir?

      (How certain are you that you can keep arthritis pain from interfering with your sleep?)

    • ¿Qué tan seguro(a) se siente usted de poder evitar que el dolor de la artritis no le deje hacer las cosas que quiere hacer?

      (How confident are you that you can keep the physical discomfort of your arthritis pain from interfering with the things you want to do?)

    • ¿Qué tan seguro(a) se siente usted de poder regular su actividad para mantenerse activo(a) sin empeorar (agravar) su artritis?

      (How certain are you that you can regulate your activity so as to be active without aggravating your arthritis?)

    • ¿Qué tan seguro(a) se siente usted de poder evitar que la fatiga (el cansancio), debido a su artritis, no le permita hacer las cosas que usted quiere hacer?

      (How confident are you that you can keep the fatigue caused by your disease from interfering with the things you want to do?)

    • ¿Qué tan seguro(a) se siente usted de poder ayudarse a si mismo(a) a sentirse mejor si se siente triste?

      (How certain are you that you can do something to help yourself feel better if you are feeling blue?)

    • ¿Comparándose con otras personas con artritis como la suya, ¿qué tan seguro(a) se siente usted de poder sobrellevar el dolor de artritis durante sus actividades diarias?

      (As compared with other people with arthritis like yours, how certain are you that you can manage arthritis pain during your daily activities?)

    • ¿Qué tan seguro(a) se siente usted de poder sobrellevar la frustración debido a su artritis? (How certain are you that you can deal with the frustration of arthritis?)

    Scoring. The score is the mean of the eight items. If more than two items are missing, set the value of the score for the scale to missing. Scores range from 1 to 10, with a higher score indicating greater self-efficacy.

    Bibliography
    González, V.M., Stewart, A., Ritter, P., & Lorig, K. (1995). Translation and validation of arthritis outcome measures into Spanish. Arthritis and Rheumatism, 38, 1429–1446.
    Lorig, K., Shoor, S., & Holman, H. R. (1989). Development and evaluation of a scale to measure perceived self-efficacy in people with arthritis. Arthritis and Rheumatism, 32, 37–44. http://dx.doi.org/10.1002/anr.1780320107
    Physical Activities

    This is the Spanish translation of the Chronic Disease Self-Management Study measure for exercise found in Appendix A.

    Durante la semana pasada (aún si no fue una semana normal) ¿cuánto tiempo en total usó (en toda la semana) en cada una de las siguientes actividades?

    • Hacer ejercicio estirar y fortalecer los músculos
    • Caminar como ejercicio
    • Nadar o hacer ejercicios en el agua
    • Andar en bicicleta (incluyendo bicicletas estacionarias)
    • Usar máquinas para ejercicios (como escaleras, remar, etc.)
    • Hacer otro ejercicio aeróbico (especifique): ___

    For scoring information, refer to Appendix A.

    AUTHORS' NOTE: The following scales were translated and validated by the Stanford Patient Education Research and Arthritis Centers, Palo Alto, CA.

    Appendix G: Sources for More Measures

    Books

    George, L. K., & Bearon, L. B. (1980). Quality of life in older persons: Meaning and measurement. New York: Human Sciences Press.

    Kane, R. A., & Kane, R. L. (1981). Assessing the elderly: A practical guide to measurement. Lexington, MA: Lexington.

    McDowell, I. Y., & Newell, C. (1987). Measuring health: A guide to rating scales and questionnaires. New York: Oxford University Press.

    Wilkin, D., Hallam, L., & Doggett, M. A. (1992). Measures of need and outcome for primary health care. New York: Oxford University Press.

    Literature Review Articles

    Applegate, W. B., Blass, J. P., & Williams, T. F. (1990). Instruments for the functional assessment of older patients. New England Journal of Medicine, 322, 1207–1214.

    Wiener, J. M., Hanley, R. J., Clark, R., & VanNostrand, J. F. (1990). Measuring the activities of daily living: Comparisons across national surveys. Journal of Gerontology, 45, S229–237.

    About the Authors

    Virginia Gonzàlez, M.P.H., is Health Educator and Research Assistant at the Stanford Patient Education Research Center in the Stanford University School of Medicine. She received an M.P.H. in health education from the School of Public Health at the University of California, Berkeley, and studied sociology at the University of California, Los Angeles. She has over 9 years' experience collaborating in the development and evaluation of community-based patient educations for people with chronic disease. Currently, she is the coinvestigator on a project to develop and evaluate a culturally relevant Spanish educational program for people with arthritis. She has served as a consultant for community-based organizations, voluntary health agencies, hospitals, and major HMOs in the United States, Canada, and Australia. She also has special interest and skill in working cross-culturally and is the author of a book, articles, and workshops on this topic.

    Diana Laurent, M.P.H., is Health Educator and Study Coordinator at the Stanford Patient Education Research Center at the Stanford University School of Medicine. She received her M.P.H. degree at San Jose State University and studied behavioral sciences and communication at the University of California, Davis. She has over 9 years' experience coordinating several research projects at Stanford. She has also served as a consultant for major HMOs, voluntary health agencies, and worksite health promotion organizations in the United States and Canada.

    Kate Lorig,R.N., Dr.P.H., is Associate Professor (research) at Stanford University School of Medicine and Director of the Stanford Patient Education Research Center. She has an M.S. in nursing from the University of California, San Francisco, and a Dr.P.H. in health education from the University of California Berkeley School of Public Health. For nearly two decades she has developed and evaluated patient education programs for people with arthritis and other chronic conditions. This work has resulted in more than 40 publications and three books, including The Arthritis Helpbook, Living a Healthy Life With Chronic Conditions, and Commonsense Patient Education: A Practical Approach. She has served as a consultant to many groups both in the United States and abroad, including the Veterans Administration Health Education Programs; Kaiser Permanente Health Education Programs; the National Arthritis Foundations of the United States, Australia, and South Africa; and the Arthritis Society of Canada. She has received awards for her work from the National Health Management Foundation, the American Public Health Association, the Society for Public Health Education, and the Arthritis Health Professionals Association.

    John Lynch, Ph.D., M.P.H., M.Ed., is Research Epidemiologist at the Human Population Laboratory in Berkeley, California. He earned a Ph.D. in epidemiology and an M.P.H. in health education from the School of Public Health at the University of California, Berkeley. He has been a Wellness Fellow and a National Heart, Lung and Blood Institute Doctoral Fellow, and in 1995 he was the recipient of the Jeremiah Stamler Research Award for New Investigators, which is granted by the Epidemiology and Prevention Council of the American Heart Association. He has more than 10 years' experience in conducting worksite health promotion programs. His major research interests are related to the social patterning of disease. In particular, he has focused on the role of socioeconomic status (SES) as a determinant of health. He has conducted research and written numerous scientific papers on such topics as the role of childhood SES in adult disease; education, income, and occupation as predictors of cardiovascular morbidity and mortality; the relationship of SES over the life course to adult health behaviors; and the impact of job strain on mortality and the progression of atherosclerosis.

    Philip Ritter, Ph.D., is Data Analyst for the Chronic Disease Self-Management Study. He was trained in both computer science (B.A., University of California, Berkeley) and anthropology (Ph.D., Stanford University). He conducted anthropological research in Micronesia, where he studied the effects of rapid population growth on family and social organizations. He then became a Research Associate with the Stanford Center for the Study of Families, Children, and Youth, where he remained for over 12 years. His research there included studies of abused and neglected children, families and schooling, and homeless families, and resulted in numerous publications. He has also taught courses in anthropological data analyses and population studies at Stanford. For the past 2 years he has been associated with the Stanford Patient Education Research Center.

    Anita Stewart, Ph.D., is Social Psychologist at the Institute for Health and Aging and an Associate Professor in Residence in the Department of Social and Behavioral Sciences, University of California, San Francisco (UCSF). She received her doc-torate from the University of California at Los Angeles. She has extensive experience in the conceptualization and measurement of health, health-related quality of life, health behaviors, and other health-related concepts. She was one of the key developers of the Medical Outcomes Study measures of health status while at RAND in Santa Monica prior to joining UCSF. She has published widely on issues in the assessment of health and health-related quality of life in diverse populations. She has served as a consultant to many projects and agencies, including the National Institutes of Health. Her current interests include assessment of health and health-related concepts in a variety of populations and settings, health promotion interventions, aging, and methods for evaluating the effectiveness of health services in minority and disadvantaged populations. She has evaluated the benefits of exercise and physical activity for various populations and recently conducted an intervention to increase the physical activity levels of seniors by encouraging them to participate in physical activity classes and programs offered by the community. She has numerous publications across these diverse areas.


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