IKNL Profiles > Quality of life lymphoma > Quality of life multiple myeloma May 2009

Publisher
IKNL Profiles study
Creator
Simone Oerlemans, Lonneke van de Poll - Franse
Created
Aug 02 2012
Description
Panel
iknl
Begin date
May 01 2009

Name English Dutch
Intro Life after cancer Please fill in the questionnaire by yourself, in your own pace. You can answer the questions by checking the box/number…
02q01 What is currently your marital status?
02q02 Indicate below which is your highest education level.
06q01 Do you have a paid job at this moment?
06q02 Paid job hours/week
06q03 If you do not have a paid job, which of the following reasons is most applicable to your situation?
05q01 How many times did you have contact with your general practitioner in the past 12 months?
05q02 How many of these contact moments had to do with cancer or the aftermath of cancer?
05q03 How many times did you have contact with your specialist in the past 12 months?
05q04 How many of these contact moments had to do with cancer or the aftermath of cancer?
05q05 Do you still have follow up appointments?
05q06 Did you discuss with your specialist how often you have to come back from this moment on?
05q07 Do you feel comfortable with this follow up scheme?
05q08 Did you receive care after the treatment of your illness
05q09 - 05q19 If you have had extra care, who did you get it from?
07q01 - 07q14 Below you see a list of chronic conditions and diseases. Please indicate for each condition or disease whether you have it now or have had …
07q15 - 07q28 Please indicate for each condition if you are treated for it or not.
07q29 - 07q42 Please indicate for each condition whether it interferes with your activities or not.
06q04 Which changes have you experienced in your work situation due to cancer?
06q05 Did you have trouble finding (additional) health insurance, because of cancer?
06q06 You have indicated that you have had trouble getting (additional) health insurance. What was the outcome?
06q07 Did you have trouble getting life insurance, because of cancer?
06q08 You have indicated that you have had trouble getting life insurance. What was the outcome?
06q09 Did you have trouble getting mortgage, because of cancer?
06q10 You have indicated that you have had trouble getting mortgage. What was the outcome?
Intro2 Instruction: We are interested in certain things about you and your health. Please answer each question by checking the box in the indicate…
09q01 - 09q05
09q06 - 09q16 During the past week:
09q17 - 09q28 During the past week:
09q29 How would you rate your overall health during the past week?
09q30 How would you rate your overall quality of life during the past week?
11q01 - 11q20 Patients sometimes report that they have the following symptoms or problems. Please indicate the extent to which you have experienced these…
20q01 Mobility
20q02 Self care
20q03 Daily affairs (For example work, school, householding, family- and leisure activities)
20q04 Pain / troubles
20q05 Mood
21q01 - 21q14 Below are a number of statements that people often use to describe themselves. Please read each statement and then circle the appropriate n…
Intro 3 For the following questions, please circle the number that best corresponds to your views.
22q01 How much does your illness affect your life?
22q02 How long do you think your illness will continue
22q03 How much control do you feel you have over your illness
22q04 How much do you think your treatment can help your illness?
22q05 How much do you experience symptoms from your illness?
22q06 How concerned are you about your illness?
22q07 How well do you feel you understand your illness?
22q08 How much does your illness affect you emotionally? (e.g. does it make you angry, scared, upset or depressed?
23q01 - 23q10 Fatique
Intro 4 The following questions are about how you feel right now. Please choose the answer that best describes your current feeling. Do not think t…
24q01 I feel tense or ‘wound up’
24q02 I still enjoy the things I used to enjoy
24q03 I get a sort of frightened feeling as if something awful is about to happen
24q04 I can laugh and see the funny side of things
24q05 Worrying thoughts go through my mind
24q06 I feel cheerful
24q07 I can sit at ease and feel relaxed
24q08 I feel as if I am slowed down
24q09 I get a sort of frightened feeling like ‘butterflies’ in the stomach
24q10 I have lost interest in my appearance
24q11 I feel restless, as if I have to be on the move
24q12 I look forward with enjoyment to things
24q13 I get sudden feelings of panic
24q14 I can enjoy a good book or radio or TV program
25q01 - 25q41 We would like to know how cancer affects your life. Please answer the following questions. Choose the answer that best applies to you. Ther…
Intro 5 To improve healthcare, we would like to know what information you received about the various aspects of your illness and its treatment. Ple…
26q01 - 26q20 During your current disease or treatment, how much information have you received on:
26q21 Have you received written information?
26q22 Have you received information on CD or tape / video?
26q23 Were you satisfied with the amount of information you received?
26q24 Do you wish to receive more information?
26q25 Do you wish that you had received less information?
26q26 Overall has the information you have received been helpful?
27q01 Do you use the Internet?
27q02 Did you use the Internet to find information about multiple myeloma?

Variable Dataset English Dutch
mm09a01pat_id mm09a_EN_1.0.sav Patient identifier
mm09a01response mm09a_EN_1.0.sav Response status
mm09a01gend mm09a_EN_1.0.sav Gender
mm09a01ageques mm09a_EN_1.0.sav Age category at time of questionnaire (May 2009)
mm09a01ageinc mm09a_EN_1.0.sav Age category at time of diagnosis
mm09a01yrsdiag mm09a_EN_1.0.sav Time passed since diagnosis
mm09a01treatment mm09a_EN_1.0.sav Type of treatment
mm09a01transplantation mm09a_EN_1.0.sav Stem cell transplantation
mm09a01stage mm09a_EN_1.0.sav Stage
mm09a01bmi mm09a_EN_1.0.sav Body Mass Index
mm09a01SES3 mm09a_EN_1.0.sav Social Economic Status in 3(4) categories
mm09a02q01 mm09a_EN_1.0.sav What is currently your marital status?
mm09a02q02 mm09a_EN_1.0.sav Indicate below which is your highest education level.
mm09a06q01 mm09a_EN_1.0.sav Do you have a paid job at this moment?
mm09a06q02 mm09a_EN_1.0.sav Paid job hours/week
mm09a06q03 mm09a_EN_1.0.sav If you do not have a paid job, which of the following reasons is most applicable to your situation?
mm09a05q01 mm09a_EN_1.0.sav How many times did you have contact with your general practitioner in the past 12 months?
mm09a05q02 mm09a_EN_1.0.sav How many of these contact moments had to do with cancer or the aftermath of cancer?
mm09a05q03 mm09a_EN_1.0.sav How many times did you have contact with your specialist in the past 12 months?
mm09a05q04 mm09a_EN_1.0.sav How many of these contact moments had to do with cancer or the aftermath of cancer?
mm09a05q05 mm09a_EN_1.0.sav Do you still have follow up appointments?
mm09a05q06 mm09a_EN_1.0.sav Did you discuss with your specialist how often you have to come back from this moment on?
mm09a05q07 mm09a_EN_1.0.sav Do you feel comfortable with this follow up scheme?
mm09a05q08 mm09a_EN_1.0.sav Did you receive care after the treatment of your illness?
mm09a05q09 mm09a_EN_1.0.sav Did you receive extra care from a psychologist?
mm09a05q10 mm09a_EN_1.0.sav Did you receive extra care from a sexologist?
mm09a05q11 mm09a_EN_1.0.sav Did you receive extra care from a social worker?
mm09a05q12 mm09a_EN_1.0.sav Did you receive extra care from pastoral care?
mm09a05q13 mm09a_EN_1.0.sav Did you receive extra care from a General Practitioner?
mm09a05q14 mm09a_EN_1.0.sav Did you receive extra care from a dietist?
mm09a05q15 mm09a_EN_1.0.sav Did you receive extra care from a physiotherapis?
mm09a05q16 mm09a_EN_1.0.sav Did you receive extra care from recovery and balance?
mm09a05q17 mm09a_EN_1.0.sav Did you receive extra care from creative therapy?
mm09a05q18 mm09a_EN_1.0.sav Did you receive extra care from an oncological nurse?
mm09a05q19 mm09a_EN_1.0.sav Did you receive extra care from a peer group?
mm09a07q01 mm09a_EN_1.0.sav Have you had a heart condition in the past 12 months?
mm09a07q15 mm09a_EN_1.0.sav Have you been treated for your heart condition?
mm09a07q29 mm09a_EN_1.0.sav Have you had a heart condition in the past 12 months?
mm09a07q02 mm09a_EN_1.0.sav Have you had a stroke in the past 12 months?
mm09a07q16 mm09a_EN_1.0.sav Have you been treated for your stroke?
mm09a07q30 mm09a_EN_1.0.sav Did your stroke interfere with your activities?
mm09a07q03 mm09a_EN_1.0.sav Have you had a high blood pressure in the past 12 months?
mm09a07q17 mm09a_EN_1.0.sav Have you been treated for your high blood pressure?
mm09a07q31 mm09a_EN_1.0.sav Did your high blood pressure interfere with your activities?
mm09a07q04 mm09a_EN_1.0.sav Have you had astma, chronic bronchitis or COPD in the past 12 months?
mm09a07q18 mm09a_EN_1.0.sav Have you been treated for your astma, chronic bronchitis or COPD?
mm09a07q32 mm09a_EN_1.0.sav Did your astma, chronis bronchitis or COPD interfere with your activities?
mm09a07q05 mm09a_EN_1.0.sav Have you had diabetes in the past 12 months?
mm09a07q19 mm09a_EN_1.0.sav Have you been treated for your diabetes?
mm09a07q33 mm09a_EN_1.0.sav Did your diabetes interfere with your activities?
mm09a07q06 mm09a_EN_1.0.sav Have you had ulcer in the past 12 months?
mm09a07q20 mm09a_EN_1.0.sav Have you been treated for your ulcer?
mm09a07q34 mm09a_EN_1.0.sav Did your ulcer interfere with your activities?
mm09a07q07 mm09a_EN_1.0.sav Have you had a kidney disease in the past 12 months?
mm09a07q21 mm09a_EN_1.0.sav Have you been treated for your kidney disease?
mm09a07q35 mm09a_EN_1.0.sav Did your kidney disease interfere with your activities?
mm09a07q08 mm09a_EN_1.0.sav Have you had a liver disease in the past 12 months?
mm09a07q22 mm09a_EN_1.0.sav Have you been treated for your liver disease?
mm09a07q36 mm09a_EN_1.0.sav Did your liver disease interfere with your activities?
mm09a07q09 mm09a_EN_1.0.sav Have you had anemia or another blood condition in the past 12 months?
mm09a07q23 mm09a_EN_1.0.sav Have you been treated for your anemia or other blood condition?
mm09a07q37 mm09a_EN_1.0.sav Did your anemia or other blood condition interfere with your activities?
mm09a07q10 mm09a_EN_1.0.sav Have you had a thyroid disease in the past 12 months?
mm09a07q24 mm09a_EN_1.0.sav Have you been treated for your thyroid disease?
mm09a07q38 mm09a_EN_1.0.sav Did your thyroid disease interfere with your activities?
mm09a07q11 mm09a_EN_1.0.sav Have you had a depression in the past 12 months?
mm09a07q25 mm09a_EN_1.0.sav Have you been treated for your depression?
mm09a07q39 mm09a_EN_1.0.sav Did your depression interfere with your activities?
mm09a07q12 mm09a_EN_1.0.sav Have you had arthritis in the past 12 months?
mm09a07q26 mm09a_EN_1.0.sav Have you been treated for your arthritis?
mm09a07q40 mm09a_EN_1.0.sav Did your arthritis interfere with your activities?
mm09a07q13 mm09a_EN_1.0.sav Have you had a backache in the past 12 months?
mm09a07q27 mm09a_EN_1.0.sav Have you been treated for your backache?
mm09a07q41 mm09a_EN_1.0.sav Did your backache interfere with your activities?
mm09a07q14 mm09a_EN_1.0.sav Have you had rheumatism in the past 12 months?
mm09a07q28 mm09a_EN_1.0.sav Have you been treated for your rheumatism?
mm09a07q42 mm09a_EN_1.0.sav Did your rheumatism interfere with your activities?
mm09a06q04 mm09a_EN_1.0.sav Which changes have you experienced in your work situation due to cancer?
mm09a06q05 mm09a_EN_1.0.sav Did you have trouble finding (additional) health insurance, because of cancer?
mm09a06q06 mm09a_EN_1.0.sav You have indicated that you have had trouble getting (additional) health insurance. What was the outcome?
mm09a06q07 mm09a_EN_1.0.sav Did you have trouble getting life insurance, because of cancer?
mm09a06q08 mm09a_EN_1.0.sav You have indicated that you have had trouble getting life insurance. What was the outcome?
mm09a06q09 mm09a_EN_1.0.sav Did you have trouble getting mortgage, because of cancer?
mm09a06q10 mm09a_EN_1.0.sav You have indicated that you have had trouble getting mortgage. What was the outcome?
mm09a09q01 mm09a_EN_1.0.sav Do you have any trouble doing strenuous activities, like carrying a heavy shopping bag or a suitcase?
mm09a09q02 mm09a_EN_1.0.sav Do you have any trouble taking a long walk?
mm09a09q03 mm09a_EN_1.0.sav Do you have any trouble taking a short walk outside of the house?
mm09a09q04 mm09a_EN_1.0.sav Do you need to stay in bed or a chair during the day?
mm09a09q05 mm09a_EN_1.0.sav Do you need help with eating, dressing, washing yourself or using the toilet?
mm09a09q06 mm09a_EN_1.0.sav Were you limited in doing either your work or other daily activities during the past week?
mm09a09q07 mm09a_EN_1.0.sav Were you limited in pursuing your hobbies or other leisure time activities during the past week?
mm09a09q08 mm09a_EN_1.0.sav Were you short of breath during the past week?
mm09a09q09 mm09a_EN_1.0.sav Have you had pain during the past week?
mm09a09q10 mm09a_EN_1.0.sav Did you need to rest during the past week?
mm09a09q11 mm09a_EN_1.0.sav Have you had trouble sleeping during the past week?
mm09a09q12 mm09a_EN_1.0.sav Have you felt weak during the past week?
mm09a09q13 mm09a_EN_1.0.sav Have you lacked appetite during the past week?
mm09a09q14 mm09a_EN_1.0.sav Have you felt nauseated during the past week?
mm09a09q15 mm09a_EN_1.0.sav Have you vomited during the past week?
mm09a09q16 mm09a_EN_1.0.sav Have you been constipated during the past week?
mm09a09q17 mm09a_EN_1.0.sav Have you had diarrhea during the past week?
mm09a09q18 mm09a_EN_1.0.sav Were you tired during the past week?
mm09a09q19 mm09a_EN_1.0.sav Did pain interfere with your daily activities during the past week?
mm09a09q20 mm09a_EN_1.0.sav Have you had difficulty in concentrating on things, like reading a newspaper or watching television during the past week?
mm09a09q21 mm09a_EN_1.0.sav Did you feel tense during the past week?
mm09a09q22 mm09a_EN_1.0.sav Did you worry during the past week?
mm09a09q23 mm09a_EN_1.0.sav Did you feel irritable during the past week?
mm09a09q24 mm09a_EN_1.0.sav Did you feel depressed during the past week?
mm09a09q25 mm09a_EN_1.0.sav ave you had difficulty remembering things during the past week?
mm09a09q26 mm09a_EN_1.0.sav Has your physical condition or medical treatment interfered with your family life during the past week?
mm09a09q27 mm09a_EN_1.0.sav Has your physical condition or medical treatment interfered with your social activities during the past week?
mm09a09q28 mm09a_EN_1.0.sav Has your physical condition or medical treatment caused you financial difficulties during the past week?
mm09a09q29 mm09a_EN_1.0.sav How would you rate your overall health during the past week?
mm09a09q30 mm09a_EN_1.0.sav How would you rate your overall quality of life during the past week?
mm09a09s01 mm09a_EN_1.0.sav Physical Functioning
mm09a09s02 mm09a_EN_1.0.sav Role Functioning
mm09a09s03 mm09a_EN_1.0.sav Emotional Functioning
mm09a09s04 mm09a_EN_1.0.sav Cognitive Functioning
mm09a09s05 mm09a_EN_1.0.sav Social Functioning
mm09a09s06 mm09a_EN_1.0.sav Global health status / QoL
mm09a09s07 mm09a_EN_1.0.sav Fatigue
mm09a09s08 mm09a_EN_1.0.sav Nausea / Vomiting
mm09a09s09 mm09a_EN_1.0.sav Pain
mm09a09s10 mm09a_EN_1.0.sav Dyspnoea
mm09a09s11 mm09a_EN_1.0.sav Insomnia
mm09a09s12 mm09a_EN_1.0.sav Appetite loss
mm09a09s13 mm09a_EN_1.0.sav Constipation
mm09a09s14 mm09a_EN_1.0.sav Diarhea
mm09a09s15 mm09a_EN_1.0.sav Financial Problems
mm09a11q01 mm09a_EN_1.0.sav Have you had bone aches or pain?
mm09a11q02 mm09a_EN_1.0.sav Have you had pain in your back?
mm09a11q03 mm09a_EN_1.0.sav Have you had pain in your hip?
mm09a11q04 mm09a_EN_1.0.sav Have you had pain in your arm or shoulder?
mm09a11q05 mm09a_EN_1.0.sav Have you had pain in your chest?
mm09a11q06 mm09a_EN_1.0.sav If you had pain did it increase with activity?
mm09a11q07 mm09a_EN_1.0.sav Did you feel drowsy?
mm09a11q08 mm09a_EN_1.0.sav Did you feel thirsty?
mm09a11q09 mm09a_EN_1.0.sav Have you felt ill?
mm09a11q10 mm09a_EN_1.0.sav Have you had a dry mouth?
mm09a11q11 mm09a_EN_1.0.sav Have you lost any hair?
mm09a11q12 mm09a_EN_1.0.sav Were you upset by the loss of your hair?
mm09a11q13 mm09a_EN_1.0.sav Did you have tingling hands or feet?
mm09a11q14 mm09a_EN_1.0.sav Did you feel restless or agitated?
mm09a11q15 mm09a_EN_1.0.sav Have you had acid indigestion or heartburn?
mm09a11q16 mm09a_EN_1.0.sav Have you had burning or sore eyes?
mm09a11q17 mm09a_EN_1.0.sav Have you felt physically less attractive as a result of your disease or treatment?
mm09a11q18 mm09a_EN_1.0.sav Have you been thinking about your illness?
mm09a11q19 mm09a_EN_1.0.sav Have you been worried about dying?
mm09a11q20 mm09a_EN_1.0.sav Have you worried about your health in the future?
mm09a11s01 mm09a_EN_1.0.sav Disease symptoms
mm09a11s02 mm09a_EN_1.0.sav Side effects therapy
mm09a11s03 mm09a_EN_1.0.sav Bodyimage
mm09a11s04 mm09a_EN_1.0.sav Future perspective
mm09a20q01 mm09a_EN_1.0.sav Mobility
mm09a20q02 mm09a_EN_1.0.sav Self care
mm09a20q03 mm09a_EN_1.0.sav Daily affairs (For example work, school, householding, family- and leisure activities)
mm09a20q04 mm09a_EN_1.0.sav Pain / Troubles
mm09a20q05 mm09a_EN_1.0.sav Mood
mm09a21q01 mm09a_EN_1.0.sav I make contact easily when I meet people.
mm09a21q02 mm09a_EN_1.0.sav I often make a fuss about unimportant things.
mm09a21q03 mm09a_EN_1.0.sav I often talk to strangers.
mm09a21q04 mm09a_EN_1.0.sav I often feel unhappy.
mm09a21q05 mm09a_EN_1.0.sav I am often irritated.
mm09a21q06 mm09a_EN_1.0.sav I often feel inhibited in social interactions.
mm09a21q07 mm09a_EN_1.0.sav I take a gloomy view on things.
mm09a21q08 mm09a_EN_1.0.sav I find it hard to start a conversation.
mm09a21q09 mm09a_EN_1.0.sav I am often in a bad mood.
mm09a21q10 mm09a_EN_1.0.sav I am a closed kind of person.
mm09a21q11 mm09a_EN_1.0.sav I would rather keep other people at a distance.
mm09a21q12 mm09a_EN_1.0.sav I often find myself worrying about something.
mm09a21q13 mm09a_EN_1.0.sav I am often down in the dumps.
mm09a21q14 mm09a_EN_1.0.sav When socializing, I don’t find the right things to talk about.
mm09a21s01 mm09a_EN_1.0.sav Negative affect subscale
mm09a21s02 mm09a_EN_1.0.sav Social inhibition subscale
mm09a21s03 mm09a_EN_1.0.sav Type D Personality
mm09a22q01 mm09a_EN_1.0.sav How much does your illness affect your life?
mm09a22q02 mm09a_EN_1.0.sav How long do you think your illness will continue?
mm09a22q03 mm09a_EN_1.0.sav How much control do you feel you have over your illness?
mm09a22q04 mm09a_EN_1.0.sav How much do you think your treatment can help your illness?
mm09a22q05 mm09a_EN_1.0.sav How much do you experience symptoms from your illness?
mm09a22q06 mm09a_EN_1.0.sav How concerned are you about your illness?
mm09a22q07 mm09a_EN_1.0.sav How well do you feel you understand your illness?
mm09a22q08 mm09a_EN_1.0.sav How much does your illness affect you emotionally? (e.g. does it make you angry, scared, upset or depressed?
mm09a23q01 mm09a_EN_1.0.sav I am bothered by fatigue
mm09a23q02 mm09a_EN_1.0.sav I get tired very quickly
mm09a23q03 mm09a_EN_1.0.sav I don’t do much during the day
mm09a23q04 mm09a_EN_1.0.sav I have enough energy for everyday life
mm09a23q05 mm09a_EN_1.0.sav I have enough energy for everyday life
mm09a23q06 mm09a_EN_1.0.sav I have problems starting things
mm09a23q07 mm09a_EN_1.0.sav I have problems thinking clearly
mm09a23q08 mm09a_EN_1.0.sav I feel no desire to do anything
mm09a23q09 mm09a_EN_1.0.sav Mentally, I feel exhausted
mm09a23q10 mm09a_EN_1.0.sav When I am doing something, I can concentrate quite well
mm09a23s01 mm09a_EN_1.0.sav FAS total score
mm09a24q01 mm09a_EN_1.0.sav feel tense or ‘wound up’
mm09a24q02 mm09a_EN_1.0.sav I still enjoy the things I used to enjoy
mm09a24q03 mm09a_EN_1.0.sav I get a sort of frightened feeling as if something awful is about to happen
mm09a24q04 mm09a_EN_1.0.sav I can laugh and see the funny side of things
mm09a24q05 mm09a_EN_1.0.sav Worrying thoughts go through my mind
mm09a24q06 mm09a_EN_1.0.sav I feel cheerful
mm09a24q07 mm09a_EN_1.0.sav I can sit at ease and feel relaxed
mm09a24q08 mm09a_EN_1.0.sav I feel as if I am slowed down
mm09a24q09 mm09a_EN_1.0.sav I get a sort of frightened feeling like ‘butterflies’ in the stomach
mm09a24q10 mm09a_EN_1.0.sav I have lost interest in my appearance
mm09a24q11 mm09a_EN_1.0.sav I feel restless, as if I have to be on the move
mm09a24q12 mm09a_EN_1.0.sav I look forward with enjoyment to things
mm09a24q13 mm09a_EN_1.0.sav I get sudden feelings of panic
mm09a24q14 mm09a_EN_1.0.sav I can enjoy a good book or radio or TV program
mm09a24s01 mm09a_EN_1.0.sav Anxiety total score
mm09a24s02 mm09a_EN_1.0.sav Depression total score
mm09a25q01 mm09a_EN_1.0.sav I learned something about life because of having had cancer
mm09a25q02 mm09a_EN_1.0.sav Having had cancer makes me feel unsure about my future
mm09a25q03 mm09a_EN_1.0.sav I worry about my future
mm09a25q04 mm09a_EN_1.0.sav I am afraid to die
mm09a25q05 mm09a_EN_1.0.sav I feel like time in my life is running out
mm09a25q06 mm09a_EN_1.0.sav Having had cancer has made me realize that time is precious
mm09a25q07 mm09a_EN_1.0.sav Having had cancer has strengthened my religious faith or my sense of spirituality
mm09a25q08 mm09a_EN_1.0.sav I do not take my body for granted since the cancer
mm09a25q09 mm09a_EN_1.0.sav Having had cancer has made me more concerned about my health
mm09a25q10 mm09a_EN_1.0.sav I am more aware of physical problems or changes in my body since having had cancer
mm09a25q11 mm09a_EN_1.0.sav I worry about my health
mm09a25q12 mm09a_EN_1.0.sav I worry about the cancer coming back or about getting another cancer
mm09a25q13 mm09a_EN_1.0.sav New symptoms (aches, pains, getting sick or the flu) make me worry about the cancer coming back
mm09a25q14 mm09a_EN_1.0.sav I am concerned that my energy has not returned to what it was before I had cancer
mm09a25q15 mm09a_EN_1.0.sav I am bothered that my body cannot do what it could before having had cancer
mm09a25q16 mm09a_EN_1.0.sav I worry about how my body looks
mm09a25q17 mm09a_EN_1.0.sav I feel disfigured
mm09a25q18 mm09a_EN_1.0.sav I sometimes wear clothing to cover up parts of my body I don’t want others to see
mm09a25q19 mm09a_EN_1.0.sav Having had cancer has made me take better care of myself (my health)
mm09a25q20 mm09a_EN_1.0.sav Having to pay attention to my physical health interferes with my life
mm09a25q21 mm09a_EN_1.0.sav I feel a sense of pride or accomplishment from surviving cancer
mm09a25q22 mm09a_EN_1.0.sav I learned something about myself because of having had cancer
mm09a25q24 mm09a_EN_1.0.sav I feel guilty for somehow being responsible for getting cancer
mm09a25q25 mm09a_EN_1.0.sav I feel that I am a role model to other people with cancer
mm09a25q26 mm09a_EN_1.0.sav Having had cancer has made me feel old
mm09a25q27 mm09a_EN_1.0.sav I feel guilty today for not having been available to my family when I had cancer
mm09a25q28 mm09a_EN_1.0.sav Having had cancer has been the most difficult experience in my life
mm09a25q29 mm09a_EN_1.0.sav I wonder why I got cancer
mm09a25q30 mm09a_EN_1.0.sav It is important for me to know why I got cancer
mm09a25q31 mm09a_EN_1.0.sav Having had cancer turned into a reason to make changes in my life
mm09a25q32 mm09a_EN_1.0.sav Because of cancer I have become better about expressing what I want
mm09a25q33 mm09a_EN_1.0.sav Because of cancer I have more confidence in myself
mm09a25q34 mm09a_EN_1.0.sav Having had cancer has given me direction in life
mm09a25q35 mm09a_EN_1.0.sav I place a higher value on my relationships with family or friends than I did before having had cancer
mm09a25q36 mm09a_EN_1.0.sav I feel a special bond with people with cancer
mm09a25q37 mm09a_EN_1.0.sav Because I had cancer I am more understanding of what other people may feel when they are seriously ill
mm09a25q38 mm09a_EN_1.0.sav Having had cancer has made me more willing to help others
mm09a25q39 mm09a_EN_1.0.sav I feel that I should give something back to others because I survived cancer
mm09a25q40 mm09a_EN_1.0.sav Having had cancer keeps me from doing activities I enjoy (examples: travel, socializing, recreation, time with family)
mm09a25q41 mm09a_EN_1.0.sav On-going cancer-related or treatment-related symptoms (for example bladder or bowel control, lymphedema, hair loss, scars, infertility, premature menopause, lack of energy, impotence/sexual problems, aches, pain or physical discomfort) interfere with my life.
mm09a25s01 mm09a_EN_1.0.sav Physical: health awareness
mm09a25s02 mm09a_EN_1.0.sav Physical: body changes
mm09a25s03 mm09a_EN_1.0.sav Psychological: positive self-evaluation
mm09a25s04 mm09a_EN_1.0.sav Psychological: negative self-evaluation
mm09a25s05 mm09a_EN_1.0.sav Existential: positive outlook
mm09a25s06 mm09a_EN_1.0.sav Existential: negative outlook
mm09a25s07 mm09a_EN_1.0.sav Social: life interferences
mm09a25s08 mm09a_EN_1.0.sav Social: value of relationships
mm09a25s09 mm09a_EN_1.0.sav IOC meaning of cancer
mm09a25s10 mm09a_EN_1.0.sav IOC health worry
mm09a25s11 mm09a_EN_1.0.sav IOC higher order positive scale
mm09a25s12 mm09a_EN_1.0.sav IOC higher order negative scale
mm09a26q01 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on the diagnosis of your disease?
mm09a26q02 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on the extent (spread) of your disease?
mm09a26q03 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on the possible causes of your disease?
mm09a26q04 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on whether the disease is under control?
mm09a26q05 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on the purpose of any medical tests you have had or may undergo?
mm09a26q06 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on the procedures of the medical tests?
mm09a26q07 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on the results of the medical tests you have already received?
mm09a26q08 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on the medical treatment (chemotherapy, radiotherapy, surgery or other treatment modality)?
mm09a26q09 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on non-medical treatments (for example herbal therapy, homeopathy, relaxation therapy)?
mm09a26q10 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on the expected benefit of the treatment?
mm09a26q11 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on the possible side-effects of your treatment?
mm09a26q12 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on the expected effects of the treatment on disease symptoms?
mm09a26q13 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on the effects of the treatment on social and family life?
mm09a26q14 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on the effects of the treatment on sexual activity?
mm09a26q15 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on additional help outside the hospital (e.g. help with daily activities, self help groups, district nurses)?
mm09a26q16 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on rehabilitation services (e. g. physiotherapy, occupational therapy)?
mm09a26q17 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on aspects of managing your illness at home?
mm09a26q18 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on possible professional psychological support?
mm09a26q19 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on different places of care (hospitals/outpatient services/home)?
mm09a26q20 mm09a_EN_1.0.sav During your current disease or treatment, how much information have you received on things that you can do to help yourself get well (rest, contact with others..)?
mm09a26q21 mm09a_EN_1.0.sav Have you received written information?
mm09a26q22 mm09a_EN_1.0.sav Have you received information on CD or tape / video?
mm09a26q23 mm09a_EN_1.0.sav Were you satisfied with the amount of information you received?
mm09a26q24 mm09a_EN_1.0.sav Do you wish to receive more information?
mm09a26q25 mm09a_EN_1.0.sav Do you wish that you had received less information?
mm09a26q26 mm09a_EN_1.0.sav Overall has the information you have received been helpful?
mm09a26s01 mm09a_EN_1.0.sav Information on your disease
mm09a26s02 mm09a_EN_1.0.sav Information on your medical tests
mm09a26s03 mm09a_EN_1.0.sav Information on treatment/your treatments
mm09a26s04 mm09a_EN_1.0.sav Information on other services
mm09a26s05 mm09a_EN_1.0.sav Information on other areas/places of care
mm09a26s06 mm09a_EN_1.0.sav Information on things patient can do to get well
mm09a26s07 mm09a_EN_1.0.sav Written information
mm09a26s08 mm09a_EN_1.0.sav Information on cd, tape, video
mm09a26s09 mm09a_EN_1.0.sav Satisfaction with information
mm09a26s10 mm09a_EN_1.0.sav Desire to receive more information
mm09a26s11 mm09a_EN_1.0.sav Desire to receive less information
mm09a26s12 mm09a_EN_1.0.sav Helpfulness of information
mm09a27q01 mm09a_EN_1.0.sav Do you use the Internet?
mm09a27q02 mm09a_EN_1.0.sav Did you use the Internet to find information about multiple myeloma?