Quality of life lymphoma > Quality of life multiple myeloma May 2010

Longitudinal Wave

General Information

Title

Quality of life multiple myeloma May 2010

Project Number

5.3c

Longitudinal Type

Longitudinal Wave

Begin date

01-05-2010

End date

31-07-2010

Researcher

Simone Oerlemans, Lonneke van de Poll - Franse

Publisher

IKNL Profiles study

Funding Organization

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

Codebooks and other materials

View Documentation

Codebook in English

mm10a_EN_1.0.pdf

Variables

Variable name	Variable Label	Variable Type
mm10a01pat_id	Patient identifier	preloaded
mm10a1response	Response status	derived
mm10a01gend	Gender	preloaded
mm10a01ageinc	Age category at time of diagnosis	constructed
mm10a01ageques	Age category at time of study	constructed
mm10a1yrsdiag	Time passed since diagnosis	constructed
mm10a01treatment	Primary treatment	preloaded
mm10a01BMI	Body mass index	derived
mm10a01SES3	Sociaal Economic Status	preloaded
mm10a01mode	Questionnaire filled in online or on paper	derived
mm10a02q01	What is currently your marital status?	directly measured
mm10a02q02	Indicate below which is your highest education level.	directly measured
mm10a06q01	Do you have a paid job at this moment?	directly measured
mm10a06q02	Paid job hours/week	directly measured
mm10a06q06	If you do not have a paid job, which of the following reasons is most applicable to your situation?	directly measured
mm10a06q08	Percentage of incapacity	directly measured
mm10a06q09	Due to cancer?	directly measured
mm10a03q01	Do you smoke?	directly measured
mm10a03q02	How long has it been you've quit smoking?	directly measured
mm10a03q03	Number of cigarettes per day	directly measured
mm10a03q04	Number of cigars per week	directly measured
mm10a03q05	Number of packages of pipe tobacco (50 grams) per week	directly measured
mm10a03q06	Can you state how many glasses of alcoholic drinks you drank on average per week in the past 12 months?	directly measured
mm10a03q07	How long has it been you've quit drinking alcohol?	directly measured
mm10a03q08	Number of glasses of beer per week	directly measured
mm10a03q09	Number of glasses of wine or port wine per week	directly measured
mm10a03q10	Number of glasses of liquor per week (eg. cognac, gin, whiskey, liquor)	directly measured
mm10a04q01	Going for a walk in the summer (also walking to work, shopping, and walking in leisure time)	directly measured
mm10a04q02	Going for a walk in the winter (also walking to work, shopping, and walking in leisure time)	directly measured
mm10a04q03	Riding a bike in the summer (also riding a bike to work, shopping, and cycling in leisure time)	directly measured
mm10a04q04	Riding a bike in the winter (also riding a bike to work, shopping, and cycling in leisure time)	directly measured
mm10a04q05	Gardening in the summer	directly measured
mm10a04q06	Gardening in the winter	directly measured
mm10a04q07	Keeping house in the summer (for example laundry, cleaning, cooking, taking care of children)	directly measured
mm10a04q08	Keeping house in the winter (for example laundry, cleaning, cooking, taking care of children)	directly measured
mm10a04q09	Have you done weekly sporting activities in the past year?	directly measured
mm10a05q01	How many times did you have contact with your general practitioner in the past 12 months?	directly measured
mm10a05q02	How many of these contact moments had to do with cancer or the aftermath of cancer?	directly measured
mm10a05q03	How many times did you have contact with your specialist in the past 12 months?	directly measured
mm10a05q04	How many of these contact moments had to do with cancer or the aftermath of cancer?	directly measured
mm10a05q05	Do you still have follow up appointments?	directly measured
mm10a05q06	Did you discuss with your specialist how often you have to come back from this moment on?	directly measured
mm10a05q07	Do you feel comfortable with this follow up scheme?	directly measured
mm10a05q08	Did you receive care after the treatment of your illness?	directly measured
mm10a05q09	Did you get extra care from a psychologist?	directly measured
mm10a05q10	Did you get extra care from a sexologist?	directly measured
mm10a05q11	Did you get extra care from a social worker?	directly measured
mm10a05q12	Did you get extra care from pastoral care?	directly measured
mm10a05q13	Did you get extra care from your general practitioner?	directly measured
mm10a05q14	Did you get extra care from a dietist	directly measured
mm10a05q15	Did you get extra care from a physiotherapist?	directly measured
mm10a05q16	Did you get extra care from recovery and balance?	directly measured
mm10a05q17	Did you get extra care from creative therapy?	directly measured
mm10a05q18	Did you get extra care from an oncological nurse?	directly measured
mm10a05q19	Did you get extra care from a peer group	directly measured
mm10a05q20	Did you get extra care from someone else?	directly measured
mm10a07q01	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
mm10a07q02	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Stroke	directly measured
mm10a07q03	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
mm10a07q04	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
mm10a07q05	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Diabetes	directly measured
mm10a07q06	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Ulcer	directly measured
mm10a07q07	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
mm10a07q08	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
mm10a07q09	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
mm10a07q10	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
mm10a07q11	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Depression	directly measured
mm10a07q12	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Arthritis	directly measured
mm10a07q13	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Backache	directly measured
mm10a07q14	Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Rheumatism	directly measured
mm10a07q15	Are you being treated for your heart condition?	directly measured
mm10a07q16	Are you being treated for your stroke?	directly measured
mm10a07q17	Are you being treated for your high blood pressure?	directly measured
mm10a07q18	Are you being treated for your asthma, chronic bronchitis or COPD?	directly measured
mm10a07q19	Are you being treated for your diabetes?	directly measured
mm10a07q20	Are you being treated for your ulcer?	directly measured
mm10a07q21	Are you being treated for your kidney disease?	directly measured
mm10a07q22	Are you being treated for your liver disease?	directly measured
mm10a07q23	Are you being treated for your anemia or other blood condition?	directly measured
mm10a07q24	Are you being treated for your thyroid disease?	directly measured
mm10a07q25	Are you being treated for your depression?	directly measured
mm10a07q26	Are you being treated for your arthritis?	directly measured
mm10a07q27	Are you being treated for your backache?	directly measured
mm10a07q28	Are you being treated for your rheumatism?	directly measured
mm10a07q29	Does your heart condition interfere with your activities?	directly measured
mm10a07q30	Does your stroke interfere with your activities?	directly measured
mm10a07q31	Does your high blood pressure interfere with your activities?	directly measured
mm10a07q32	Does your asthma, chronic bronchitis or COPD interfere with your activities?	directly measured
mm10a07q33	Does your diabetes interfere with your activities?	directly measured
mm10a07q34	Does your ulcer interfere with your activities?	directly measured
mm10a07q35	Does your kidney disease interfere with your activities?	directly measured
mm10a07q36	Does your liver disease interfere with your activities?	directly measured
mm10a07q37	Does your anemia or other blood condition interfere with your activities?	directly measured
mm10a07q38	Does your thyroid disease interfere with your activities?	directly measured
mm10a07q39	Does your depression interfere with your activities?	directly measured
mm10a07q40	Does your arthritis interfere with your activities?	directly measured
mm10a07q41	Does your backache interfere with your activities?	directly measured
mm10a07q42	Does your rheumatism interfere with your activities?	directly measured
mm10a06q07	Which changes have you experienced in your work situation due to cancer?	directly measured
mm10a53q01	Did you have trouble finding (additional) health insurance, because of cancer?	directly measured
mm10a53q02	You have indicated that you have had trouble getting (additional) health insurance. What was the outcome?	directly measured
mm10a53q03	Did you have trouble getting life insurance, because of cancer?	directly measured
mm10a53q04	You have indicated that you have had trouble getting life insurance. What was the outcome?	directly measured
mm10a53q05	Did you have trouble getting mortgage, because of cancer?	directly measured
mm10a53q06	You have indicated that you have had trouble getting mortgage. What was the outcome?	directly measured
mm10a09q01	Do you have any trouble doing strenuous activities, like carrying a heavy shopping bag or a suitcase?	directly measured
mm10a09q02	Do you have any trouble taking a long walk?	directly measured
mm10a09q03	Do you have any trouble taking a short walk outside of the house?	directly measured
mm10a09q04	Do you need to stay in bed or a chair during the day?	directly measured
mm10a09q05	Do you need help with eating, dressing, washing yourself or using the toilet?	directly measured
mm10a09q06	Were you limited in doing either your work or other daily activities?	directly measured
mm10a09q07	Were you limited in pursuing your hobbies or other leisure time activities	directly measured
mm10a09q08	Were you short of breath?	directly measured
mm10a09q09	Have you had pain?	directly measured
mm10a09q10	Did you need to rest?	directly measured
mm10a09q11	Have you had trouble sleeping?	directly measured
mm10a09q12	Have you felt weak?	directly measured
mm10a09q13	Have you lacked appetite?	directly measured
mm10a09q14	Have you felt nauseated?	directly measured
mm10a09q15	Have you vomited?	directly measured
mm10a09q16	Have you been constipated?	directly measured
mm10a09q17	Have you had diarrhea?	directly measured
mm10a09q18	Were you tired?	directly measured
mm10a09q19	Did pain interfere with your daily activities?	directly measured
mm10a09q20	Have you had difficulty in concentrating on things, like reading a newspaper or watching television?	directly measured
mm10a09q21	Did you feel tense?	directly measured
mm10a09q22	Did you worry?	directly measured
mm10a09q23	Did you feel irritable?	directly measured
mm10a09q24	Did you feel depressed?	directly measured
mm10a09q25	Have you had difficulty remembering things?	directly measured
mm10a09q26	Has your physical condition or medical treatment interfered with your family life?	directly measured
mm10a09q27	Has your physical condition or medical treatment interfered with your social activities?	directly measured
mm10a09q28	Has your physical condition or medical treatment caused you financial difficulties?	directly measured
mm10a09q29	How would you rate your overall health during the past week?	directly measured
mm10a09q30	How would you rate your overall quality of life during the past week?	directly measured
mm10a09s01	Global health status/QoL	derived
mm10a09s02	Physical Function	derived
mm10a09s03	Role Functiong	derived
mm10a09s04	Emotional Function	derived
mm10a09s05	Cognitive Function	derived
mm10a09s06	Social Function	derived
mm10a09s07	Fatigue	derived
mm10a09s08	Nausea / vomiting	derived
mm10a09s09	Pain	derived
mm10a09s10	Dyspnoea	derived
mm10a09s11	Insomnia	derived
mm10a09s12	Appetite loss	derived
mm10a09s13	Constipation	derived
mm10a09s14	Diarrhea	derived
mm10a09s15	Financial problems	derived
mm10a12q01	Have you had bone aches or pain?	directly measured
mm10a12q02	Have you had pain in your back?	directly measured
mm10a12q03	Have you had pain in your hip?	directly measured
mm10a12q04	Have you had pain in your arm or shoulder?	directly measured
mm10a12q05	Have you had pain in your chest?	directly measured
mm10a12q06	If you had pain did it increase with activity?	directly measured
mm10a12q07	Did you feel drowsy?	directly measured
mm10a12q08	Did you feel thirsty?	directly measured
mm10a12q09	Have you felt ill?	directly measured
mm10a12q10	Have you had a dry mouth?	directly measured
mm10a12q11	Have you lost any hair?	directly measured
mm10a12q12	Answer this question only if you lost any hair: Were you upset by the loss of your hair?	directly measured
mm10a12q13	Did you have tingling hands or feet?	directly measured
mm10a12q14	Did you feel restless or agitated?	directly measured
mm10a12q15	Have you had acid indigestion or heartburn?	directly measured
mm10a12q16	Have you had burning or sore eyes?	directly measured
mm10a12q17	Have you felt physically less attractive as a result of your disease or treatment?	directly measured
mm10a12q18	Have you been thinking about your illness?	directly measured
mm10a12q19	Have you been worried about dying?	directly measured
mm10a12q20	Have you worried about your health in the future?	directly measured
mm10a23q01	I am bothered by fatigue	directly measured
mm10a23q02	I get tired very quickly	directly measured
mm10a23q03	I donâ€™t do much during the day	directly measured
mm10a23q04	I have enough energy for everyday life	directly measured
mm10a23q05	Physically, I feel exhausted	directly measured
mm10a23q06	I have problems starting things	directly measured
mm10a23q07	I have problems thinking clearly	directly measured
mm10a23q08	I feel no desire to do anything	directly measured
mm10a23q09	Mentally, I feel exhausted	directly measured
mm10a23q10	When I am doing something, I can concentrate quite well	directly measured
mm10a23s01	FAS total score	derived
mm10a24q01	I feel tense or â€˜wound upâ€™	directly measured
mm10a24q02	I still enjoy the things I used to enjoy	directly measured
mm10a24q03	I get a sort of frightened feeling as if something awful is about to happen	directly measured
mm10a24q04	I can laugh and see the funny side of things	directly measured
mm10a24q05	Worrying thoughts go through my mind	directly measured
mm10a24q06	I feel cheerful	directly measured
mm10a24q07	I can sit at ease and feel relaxed	directly measured
mm10a24q08	I feel as if I am slowed down	directly measured
mm10a24q09	I get a sort of frightened feeling like â€˜butterfliesâ€™ in the stomach	directly measured
mm10a24q10	I have lost interest in my appearance	directly measured
mm10a24q11	I feel restless, as if I have to be on the move	directly measured
mm10a24q12	I look forward with enjoyment to things	directly measured
mm10a24q13	I get sudden feelings of panic	directly measured
mm10a24q14	I can enjoy a good book or radio or TV program	directly measured
mm10a24s01	Anxiety total score	derived
mm10a24s02	Depression total score	derived

Questions

Questionnaire: Quality of life Multiple Myeloma

Browse Quality of life Multiple Myeloma

Response Information

Response Overview

The questionnaire was submitted to 126 patients of 18 years and older. 88 patients completed the questionnaire (70%).

Collection Events

Period

01-05-2010 to 31-07-2010

Sample

The questionnaire was submitted to 126 patients who were diagnosed with Multipel Myeloma between 1999 and 2009.

Collection Mode

Mixed-mode survey

Fieldwork Note

A reminder was sent one to non-respondents. Please note: Patients who were diagnosed more than 3 years ago have to fill in some additional questions about education, length and contact with general practitioner/specialists. Patients who were recently (0-3 years) diagnosed didn't get these additional questions.