Quality of life lymphoma > Quality of life multiple myeloma November 2009

Longitudinal Wave

General Information

Title

Quality of life multiple myeloma November 2009

Project Number

5.2c

Longitudinal Type

Longitudinal Wave

Begin date

01-11-2009

End date

28-02-2010

Researcher

Simone Oerlemans, Lonneke van de Poll-Franse

Publisher

IKNL Profiles study

Funding Organization

ZonMW (the Netherlands organization for health research and development)
Jonker-Driessen Foundation
NWO (the Netherlands Organization for Scientific Research)

Codebooks and other materials

View Documentation

Codebook in English

Codebook_mm09b_EN_1.0

Variables

Variable name	Variable Label	Variable Type
mm09b01pat_id	Patient identifier	preloaded
mm09b1response	Response status	derived
mm09b01gend	Gender	preloaded
mm09b01ageinc	Age category at time of diagnosis	constructed
mm09b01ageques	Age category at time of study	constructed
mm09b1yrsdiag	Time passed since diagnosis	constructed
mm09b01treatment	Primary treatment	preloaded
mm09b01stage	Stage	preloaded
mm09b01BMI	Body mass index	derived
mm09b01SES3	Sociaal Economic Status	preloaded
mm09b02q01	What is currently your marital status?	directly measured
mm09b02q02	Indicate below which is your highest education level.	directly measured
mm09b06q01	Do you have a paid job at this moment?	directly measured
mm09b06q02	Paid job hours/week	directly measured
mm09b06q06	If you do not have a paid job, which of the following reasons is most applicable to your situation?	directly measured
mm09b06q08	Percentage of incapacity	directly measured
mm09b06q09	Due to cancer?	directly measured
mm09b03q01	Do you smoke?	directly measured
mm09b03q02	How long has it been you've quit smoking?	directly measured
mm09b03q03	Number of cigarettes per day	directly measured
mm09b03q04	Number of cigars per week	directly measured
mm09b03q05	Number of packages of pipe tobacco (50 grams) per week	directly measured
mm09b03q06	Can you state how many glasses of alcoholic drinks you drank on average per week in the past 12 months?	directly measured
mm09b03q07	How long has it been you've quit drinking alcohol?	directly measured
mm09b03q08	Number of glasses of beer per week	directly measured
mm09b03q09	Number of glasses of wine or port wine per week	directly measured
mm09b03q10	Number of glasses of liquor per week (eg. cognac, gin, whiskey, liquor)	directly measured
mm09b04q01	Going for a walk in the summer (also walking to work, shopping, and walking in leisure time)	directly measured
mm09b04q02	Going for a walk in the winter (also walking to work, shopping, and walking in leisure time)	directly measured
mm09b04q03	Riding a bike in the summer (also riding a bike to work, shopping, and cycling in leisure time)	directly measured
mm09b04q04	Riding a bike in the winter (also riding a bike to work, shopping, and cycling in leisure time)	directly measured
mm09b04q05	Gardening in the summer	directly measured
mm09b04q06	Gardening in the winter	directly measured
mm09b04q07	Keeping house in the summer (for example laundry, cleaning, cooking, taking care of children)	directly measured
mm09b04q08	Keeping house in the winter (for example laundry, cleaning, cooking, taking care of children)	directly measured
mm09b04q09	Have you done weekly sporting activities in the past year?	directly measured
mm09b05q01	How many times did you have contact with your general practitioner in the past 12 months?	directly measured
mm09b05q02	How many of these contact moments had to do with cancer or the aftermath of cancer?	directly measured
mm09b05q03	How many times did you have contact with your specialist in the past 12 months?	directly measured
mm09b05q04	How many of these contact moments had to do with cancer or the aftermath of cancer?	directly measured
mm09b05q05	Do you still have follow up appointments?	directly measured
mm09b05q06	Did you discuss with your specialist how often you have to come back from this moment on?	directly measured
mm09b05q07	Do you feel comfortable with this follow up scheme?	directly measured
mm09b05q08	Did you receive care after the treatment of your illness?	directly measured
mm09b05q09	Did you get extra care from a psychologist?	directly measured
mm09b05q10	Did you get extra care from a sexologist?	directly measured
mm09b05q11	Did you get extra care from a social worker?	directly measured
mm09b05q12	Did you get extra care from pastoral care?	directly measured
mm09b05q13	Did you get extra care from your general practitioner?	directly measured
mm09b05q14	Did you get extra care from a dietist	directly measured
mm09b05q15	Did you get extra care from a physiotherapist?	directly measured
mm09b05q16	Did you get extra care from recovery and balance?	directly measured
mm09b05q17	Did you get extra care from creative therapy?	directly measured
mm09b05q18	Did you get extra care from an oncological nurse?	directly measured
mm09b05q19	Did you get extra care from a peer group	directly measured
mm09b05q20	Did you get extra care from someone else?	directly measured
mm09b07q01	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Heart condition	directly measured
mm09b07q02	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Stroke	directly measured
mm09b07q03	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: High blood pressure	directly measured
mm09b07q04	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Asthma, chonic bronchitis, COPD	directly measured
mm09b07q05	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Diabetes	directly measured
mm09b07q06	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Ulcer	directly measured
mm09b07q07	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Kidney disease	directly measured
mm09b07q08	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Liver disease	directly measured
mm09b07q09	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Anemia or other blood condition	directly measured
mm09b07q10	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Thyroid disease	directly measured
mm09b07q11	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Depression	directly measured
mm09b07q12	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Arthritis	directly measured
mm09b07q13	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Backache	directly measured
mm09b07q14	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Rheumatism	directly measured
mm09b07q15	Are you being treated for your heart condition?	directly measured
mm09b07q16	Are you being treated for your stroke?	directly measured
mm09b07q17	Are you being treated for your high blood pressure?	directly measured
mm09b07q18	Are you being treated for your asthma, chronic bronchitis or COPD?	directly measured
mm09b07q19	Are you being treated for your diabetes?	directly measured
mm09b07q20	Are you being treated for your ulcer?	directly measured
mm09b07q21	Are you being treated for your kidney disease?	directly measured
mm09b07q22	Are you being treated for your liver disease?	directly measured
mm09b07q23	Are you being treated for your anemia or other blood condition?	directly measured
mm09b07q24	Are you being treated for your thyroid disease?	directly measured
mm09b07q25	Are you being treated for your depression?	directly measured
mm09b07q26	Are you being treated for your arthritis?	directly measured
mm09b07q27	Are you being treated for your backache?	directly measured
mm09b07q28	Are you being treated for your rheumatism?	directly measured
mm09b07q29	Does your heart condition interfere with your activities?	directly measured
mm09b07q30	Does your stroke interfere with your activities?	directly measured
mm09b07q31	Does your high blood pressure interfere with your activities?	directly measured
mm09b07q32	Does your asthma, chronic bronchitis or COPD interfere with your activities?	directly measured
mm09b07q33	Does your diabetes interfere with your activities?	directly measured
mm09b07q34	Does your ulcer interfere with your activities?	directly measured
mm09b07q35	Does your kidney disease interfere with your activities?	directly measured
mm09b07q36	Does your liver disease interfere with your activities?	directly measured
mm09b07q37	Does your anemia or other blood condition interfere with your activities?	directly measured
mm09b07q38	Does your thyroid disease interfere with your activities?	directly measured
mm09b07q39	Does your depression interfere with your activities?	directly measured
mm09b07q40	Does your arthritis interfere with your activities?	directly measured
mm09b07q41	Does your backache interfere with your activities?	directly measured
mm09b07q42	Does your rheumatism interfere with your activities?	directly measured
mm09b06q07	Which changes have you experienced in your work situation due to cancer?	directly measured
mm09b53q01	Did you have trouble finding (additional) health insurance, because of cancer?	directly measured
mm09b53q02	You have indicated that you have had trouble getting (additional) health insurance. What was the outcome?	directly measured
mm09b53q03	Did you have trouble getting life insurance, because of cancer?	directly measured
mm09b53q04	You have indicated that you have had trouble getting life insurance. What was the outcome?	directly measured
mm09b53q05	Did you have trouble getting mortgage, because of cancer?	directly measured
mm09b53q06	You have indicated that you have had trouble getting mortgage. What was the outcome?	directly measured
mm09b09q01	Do you have any trouble doing strenuous activities, like carrying a heavy shopping bag or a suitcase?	directly measured
mm09b09q02	Do you have any trouble taking a long walk?	directly measured
mm09b09q03	Do you have any trouble taking a short walk outside of the house?	directly measured
mm09b09q04	Do you need to stay in bed or a chair during the day?	directly measured
mm09b09q05	Do you need help with eating, dressing, washing yourself or using the toilet?	directly measured
mm09b09q06	Were you limited in doing either your work or other daily activities?	directly measured
mm09b09q07	Were you limited in pursuing your hobbies or other leisure time activities	directly measured
mm09b09q08	Were you short of breath?	directly measured
mm09b09q09	Have you had pain?	directly measured
mm09b09q10	Did you need to rest?	directly measured
mm09b09q11	Have you had trouble sleeping?	directly measured
mm09b09q12	Have you felt weak?	directly measured
mm09b09q13	Have you lacked appetite?	directly measured
mm09b09q14	Have you felt nauseated?	directly measured
mm09b09q15	Have you vomited?	directly measured
mm09b09q16	Have you been constipated?	directly measured
mm09b09q17	Have you had diarrhea?	directly measured
mm09b09q18	Were you tired?	directly measured
mm09b09q19	Did pain interfere with your daily activities?	directly measured
mm09b09q20	Have you had difficulty in concentrating on things, like reading a newspaper or watching television?	directly measured
mm09b09q21	Did you feel tense?	directly measured
mm09b09q22	Did you worry?	directly measured
mm09b09q23	Did you feel irritable?	directly measured
mm09b09q24	Did you feel depressed?	directly measured
mm09b09q25	Have you had difficulty remembering things?	directly measured
mm09b09q26	Has your physical condition or medical treatment interfered with your family life?	directly measured
mm09b09q27	Has your physical condition or medical treatment interfered with your social activities?	directly measured
mm09b09q28	Has your physical condition or medical treatment caused you financial difficulties?	directly measured
mm09b09q29	How would you rate your overall health during the past week?	directly measured
mm09b09q30	How would you rate your overall quality of life during the past week?	directly measured
mm09b09s01	Global health status/QoL	derived
mm09b09s02	Physical Function	derived
mm09b09s03	Role Functiong	derived
mm09b09s04	Emotional Function	derived
mm09b09s05	Cognitive Function	derived
mm09b09s06	Social Function	derived
mm09b09s07	Fatigue	derived
mm09b09s08	Nausea / vomiting	derived
mm09b09s09	Pain	derived
mm09b09s10	Dyspnoea	derived
mm09b09s11	Insomnia	derived
mm09b09s12	Appetite loss	derived
mm09b09s13	Constipation	derived
mm09b09s14	Diarrhea	derived
mm09b09s15	Financial problems	derived
mm09b12q01	Have you had bone aches or pain?	directly measured
mm09b12q02	Have you had pain in your back?	directly measured
mm09b12q03	Have you had pain in your hip?	directly measured
mm09b12q04	Have you had pain in your arm or shoulder?	directly measured
mm09b12q05	Have you had pain in your chest?	directly measured
mm09b12q06	If you had pain did it increase with activity?	directly measured
mm09b12q07	Did you feel drowsy?	directly measured
mm09b12q08	Did you feel thirsty?	directly measured
mm09b12q09	Have you felt ill?	directly measured
mm09b12q10	Have you had a dry mouth?	directly measured
mm09b12q11	Have you lost any hair?	directly measured
mm09b12q12	Answer this question only if you lost any hair: Were you upset by the loss of your hair?	directly measured
mm09b12q13	Did you have tingling hands or feet?	directly measured
mm09b12q14	Did you feel restless or agitated?	directly measured
mm09b12q15	Have you had acid indigestion or heartburn?	directly measured
mm09b12q16	Have you had burning or sore eyes?	directly measured
mm09b12q17	Have you felt physically less attractive as a result of your disease or treatment?	directly measured
mm09b12q18	Have you been thinking about your illness?	directly measured
mm09b12q19	Have you been worried about dying?	directly measured
mm09b12q20	Have you worried about your health in the future?	directly measured
mm09b20q01	Mobility	directly measured
mm09b20q02	Self care	directly measured
mm09b20q03	Daily affairs (For example work, school, householding, family- and leisure activities)	directly measured
mm09b20q04	Pain / troubles	directly measured
mm09b20q05	Mood	directly measured
mm09b21q01	I make contact easily when I meet people.	directly measured
mm09b21q02	I often make a fuss about unimportant things.	directly measured
mm09b21q03	I often talk to strangers	directly measured
mm09b21q04	I often feel unhappy	directly measured
mm09b21q05	I am often irritated	directly measured
mm09b21q06	I often feel inhibited in social interactions	directly measured
mm09b21q07	I take a gloomy view on things	directly measured
mm09b21q08	I find it hard to start a conversation.	directly measured
mm09b21q09	I am often in a bad mood	directly measured
mm09b21q10	I am a closed kind of person	directly measured
mm09b21q11	I would rather keep other people at a distance	directly measured
mm09b21q12	I often find myself worrying about something	directly measured
mm09b21q13	I am often down in the dumps	directly measured
mm09b21q14	When socializing, I donâ€™t find the right things to talk about.	directly measured
mm09b21s01	Negative affect subscale	derived
mm09b21s02	Social inhibition subscale	derived
mm09b21s03	Type D personality	derived
mm09b22q01	How much does your illness affect your life?	directly measured
mm09b22q02	How long do you think your illness will continue?	directly measured
mm09b22q03	How much control do you feel you have over your illness?	directly measured
mm09b22q04	How much do you think your treatment can help your illness?	directly measured
mm09b22q05	How much do you experience symptoms from your illness?	directly measured
mm09b22q06	How concerned are you about your illness?	directly measured
mm09b22q07	How well do you feel you understand your illness?	directly measured
mm09b22q08	How much does your illness affect you emotionally? (e.g. does it make you angry, scared, upset or depressed?	directly measured
mm09b23q01	I am bothered by fatigue	directly measured
mm09b23q02	I get tired very quickly	directly measured
mm09b23q03	I donâ€™t do much during the day	directly measured
mm09b23q04	I have enough energy for everyday life	directly measured
mm09b23q05	Physically, I feel exhausted	directly measured
mm09b23q06	I have problems starting things	directly measured
mm09b23q07	I have problems thinking clearly	directly measured
mm09b23q08	I feel no desire to do anything	directly measured
mm09b23q09	Mentally, I feel exhausted	directly measured
mm09b23q10	When I am doing something, I can concentrate quite well	directly measured
mm09b23s01	FAS total score	derived
mm09b24q01	I feel tense or â€˜wound upâ€™	directly measured
mm09b24q02	I still enjoy the things I used to enjoy	directly measured
mm09b24q03	I get a sort of frightened feeling as if something awful is about to happen	directly measured
mm09b24q04	I can laugh and see the funny side of things	directly measured
mm09b24q05	Worrying thoughts go through my mind	directly measured
mm09b24q06	I feel cheerful	directly measured
mm09b24q07	I can sit at ease and feel relaxed	directly measured
mm09b24q08	I feel as if I am slowed down	directly measured
mm09b24q09	I get a sort of frightened feeling like â€˜butterfliesâ€™ in the stomach	directly measured
mm09b24q10	I have lost interest in my appearance	directly measured
mm09b24q11	I feel restless, as if I have to be on the move	directly measured
mm09b24q12	I look forward with enjoyment to things	directly measured
mm09b24q13	I get sudden feelings of panic	directly measured
mm09b24q14	I can enjoy a good book or radio or TV program	directly measured
mm09b24s01	Anxiety total score	derived
mm09b24s02	Depression total score	derived
mm09b26q01	How much information have you received on: The diagnosis of your disease?	directly measured
mm09b26q02	How much information have you received on: The extent (spread) of your disease?	directly measured
mm09b26q03	How much information have you received on: The possible causes of your disease?	directly measured
mm09b26q04	How much information have you received on: Whether the disease is under control?	directly measured
mm09b26q05	How much information have you received on: The purpose of any medical tests you have had or may undergo?	directly measured
mm09b26q06	How much information have you received on: The procedures of the medical tests?	directly measured
mm09b26q07	How much information have you received on: The results of the medical tests you have already received?	directly measured
mm09b26q08	How much information have you received on: The medical treatment (chemotherapy, radiotherapy, surgery or other treatment modality)?	directly measured
mm09b26q09	How much information have you received on: Non-medical treatments (for example herbal therapy, homeopathy, relaxation therapy)?	directly measured
mm09b26q10	How much information have you received on: The expected benefit of the treatment?	directly measured
mm09b26q11	How much information have you received on: The possible side-effects of your treatment?	directly measured
mm09b26q12	How much information have you received on: The expected effects of the treatment on disease symptoms?	directly measured
mm09b26q13	How much information have you received on: The effects of the treatment on social and family life?	directly measured
mm09b26q14	How much information have you received on: The effects of the treatment on sexual activity?	directly measured
mm09b26q15	How much information have you received on: Additional help outside the hospital (e.g. help with daily activities, self help groups, district nurses)?	directly measured
mm09b26q16	How much information have you received on: Rehabilitation services (e. g. physiotherapy, occupational therapy)?	directly measured
mm09b26q17	How much information have you received on: Aspects of managing your illness at home?	directly measured
mm09b26q18	How much information have you received on: Possible professional psychological support?	directly measured
mm09b26q19	How much information have you received on: Different places of care (hospitals/outpatient services/home)?	directly measured
mm09b26q20	How much information have you received on: Things that you can do to help yourself get well (rest, contact with others..)?	directly measured
mm09b26q21	Have you received written information?	directly measured
mm09b26q22	Have you received information on CD or tape / video?	directly measured
mm09b26q23	Were you satisfied with the amount of information you received?	directly measured
mm09b26q24	Do you wish to receive more information?	directly measured
mm09b26q25	Do you wish that you had received less information?	directly measured
mm09b26q26	Overall has the information you have received been helpful?	directly measured
mm09b26s01	Information on your disease	derived
mm09b26s02	Information on your medical tests	derived
mm09b26s03	Information on treatment/your treatments	derived
mm09b26s04	Information on other services	derived
mm09b26s05	Information on other areas/places of care	derived
mm09b26s06	Information on things patient can do to get well	derived
mm09b26s07	Written information	derived
mm09b26s08	Information on cd, tape, video	derived
mm09b26s09	Satisfaction with information	derived
mm09b26s10	Desire to receive more information	derived
mm09b26s11	Desire to receive less information	derived
mm09b26s12	Helpfulness of information	derived
mm09b27q01	Do you use the Internet?	directly measured
mm09b27q02	Did you use the Internet to find information about Multipel Myeloom?	directly measured

Questions

Questionnaire: Quality of life Multiple Myeloma

The questionnaire was originally conducted in Dutch.

Browse Quality of life Multiple Myeloma

Response Information

Response Overview

The questionnaire was submitted to 113 patients of 18 years and older. 74 patients completed the questionnaire (reponse rate 63%).

Collection Events

Period

01-11-2009 to 31-12-2009

Sample

Patients diagnosed with multiple myeloma between 1999 and 2009 in the southern region of the Netherlands

Collection Mode

paper-and-pencil survey

Fieldwork Note

A reminder was sent once to non-respondents. Please note: Patients who were new included in the study or were diagnosed more than 3 years ago have to fill in some additional questions about education, length, lifestyle, activities, work and insurance, personality, personal ideas about cancer and satisfaction with information provision. Patients who were already included in the study and were recently (0-3 years) diagnosed didn't get these additional questions.