Single Wave Study

General Information

Title
Life after the diagnosis of melanoma 2008
Project Number
4.0
Abstract
In 2008 a questionnaire has been composed treating the subjects health-related quality of life, use of health care and satisfaction with care in patients who had been diagnosed with melanoma.
Longitudinal Type
Single Wave Study
Begin date
01-02-2008
End date
30-04-2008
Topics
Researcher
Lonneke van de Poll - Franse
Publisher
IKNL Profiles study
Copyright
Copyright IKNL Profiles study

Codebooks and other materials

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Codebook in English

Variables

Variable name Variable Label Variable Type
ml08a01pat_idStudy numberpreloaded
ml08a01responseResponse statusderived
ml08a01gendGenderpreloaded
ml08a01agequesAge category at time of questionnaire (February 2008)constructed
ml08a01ageincAge category at time of diagnosisconstructed
ml08a01timediagTime passed since diagnosisconstructed
ml08a01sesSocial Economic Status in 3(4) categoriespreloaded
ml08a01systSystemic therapypreloaded
ml08a01chemoChemotherapypreloaded
ml08a01hormHormonal therapypreloaded
ml08a01immunoImmunotherapypreloaded
ml08a01surgSurgerypreloaded
ml08a01radiothRadiotherapypreloaded
ml08a01breslowBreslow stagepreloaded
ml08a01stageStagepreloaded
ml08a02q01Do your grandparents come from The Netherlands?directly measured
ml08a02q02Do your grandparents come from another European country?directly measured
ml08a02q03Do your grandparents come from Asia?directly measured
ml08a02q04Do your grandparents come from North Africa?directly measured
ml08a02q05Do your grandparents come from Central / South Africa?directly measured
ml08a02q06Do your grandparents come from North / South America?directly measured
ml08a02q07What is currently your marital status?directly measured
ml08a02q08Do you currently have a steady partner?directly measured
ml08a02q09Do you have children?directly measured
ml08a02q10Do you live in the same house as your child(ren)?directly measured
ml08a02q11Indicate below which is your highest education level.directly measured
ml08a06q01I work 1 - 16 hours a weekdirectly measured
ml08a06q02I work 17 - 32 hours a weekdirectly measured
ml08a06q03I work 33 - 40 hours a weekdirectly measured
ml08a06q04I work more than 40 hours a weekdirectly measured
ml08a06q05I have no jobdirectly measured
ml08a06q06I am looking for a jobdirectly measured
ml08a06q07I am disableddirectly measured
ml08a06q08I am retireddirectly measured
ml08a06q09I am a housewife / mandirectly measured
ml08a06q10I am a studentdirectly measured
ml08a06q11Which changes have you experienced in your work situation due to cancer?directly measured
ml08a06q12Did you have trouble finding (additional) health insurance, because of cancer?directly measured
ml08a06q13Have you experienced problems with getting life insurance, because of cancer?directly measured
ml08a06q14Have you experienced problems with getting disability insurance, because of cancer?directly measured
ml08a06q15Have you experienced problems with getting mortgage, because of cancer?directly measured
ml08a19q01In general, would you say your health is:directly measured
ml08a19q02Compared to one year ago, how would you rate your health in general now?directly measured
ml08a19q03Does your health now limit you in vigorous activities, such as running, lifting heavy objects or participating in strenuous sports and if so, how much?directly measured
ml08a19q04Does your health now limit you in moderate activities, such as moving a table, pushing a vacuum cleaner or swimming and if so, how much?directly measured
ml08a19q05Does your health now limit you in activities, such as lifting or carrying groceries and if so, how much?directly measured
ml08a19q06Does your health now limit you in activities, such as climbing several flights of stairs and if so, how much?directly measured
ml08a19q07Does your health now limit you in activities, such as climbing one flight of stairs and if so, how much?directly measured
ml08a19q08Does your health now limit you in activities, such as bending, kneeling or stooping and if so, how much?directly measured
ml08a19q09Does your health now limit you in activities, such as walking more than a mile and if so, how much?directly measured
ml08a19q10Does your health now limit you in activities, such as walking several blocks and if so, how much?directly measured
ml08a19q11Does your health now limit you in activities, such as walking one block and if so, how much?directly measured
ml08a19q12Does your health now limit you in activities, such as bathing or dressing yourself and if so, how much?directly measured
ml08a19q13During the past 4 weeks, did you cut down on the amount of time you spent on work or other activities as a result of your physical health?directly measured
ml08a19q14During the past 4 weeks, did you accomplish less than you would have liked to as a result of your physical health?directly measured
ml08a19q15During the past 4 weeks, were you limited in the kind of work or other activities as a result of your physical health?directly measured
ml08a19q16During the past 4 weeks, did you have difficulties performing the work or other activities as a result of your physical health?directly measured
ml08a19q17During the past 4 weeks, did you cut down on the amount of time you spent on work or other activities as a result of your emotional problems?directly measured
ml08a19q18During the past 4 weeks, did you accomplish less than you would have liked to as a result of your emotional problems?directly measured
ml08a19q19During the past 4 weeks, did you not do your work or other activities as carefully as usual as a result of your emotional problems?directly measured
ml08a19q20During the past 4 weeks, to what extent has your physical health or emotional problems interfered with your normal activities with family, friends, neighbours or groups?directly measured
ml08a19q21How much physical pain have you had during the past 4 weeks?directly measured
ml08a19q22During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)?directly measured
ml08a19q23How much of the time during the past 4 weeks did you feel full of pep?directly measured
ml08a19q24How much of the time during the past 4 weeks have you been a very nervous person?directly measured
ml08a19q25How much of the time during the past 4 weeks have you felt so down in the dumps that nothing could cheer you up?directly measured
ml08a19q26How much of the time during the past 4 weeks have you felt calm and peaceful?directly measured
ml08a19q27How much of the time during the past 4 weeks did you have a lot of energy?directly measured
ml08a19q28How much of the time during the past 4 weeks have you felt downhearted and blue?directly measured
ml08a19q29How much of the time during the past 4 weeks did you feel worn out?directly measured
ml08a19q30How much of the time during the past 4 weeks have you been a happy person?directly measured
ml08a19q31How much of the time during the past 4 weeks did you feel tired?directly measured
ml08a19q32During the past 4 weeks, how much of the time has your physical health or emotional problems interfered with your social activities (like visiting with friends, relatives, etc.)?directly measured
ml08a19q33I seem to get sick a little easier than other peopledirectly measured
ml08a19q34I am as healthy as anybody I knowdirectly measured
ml08a19q35I expect my health to get worsedirectly measured
ml08a19q36My health is excellentdirectly measured
ml08a19s01General healthderived
ml08a19s02Physical functionderived
ml08a19s03Role functioning - physicalderived
ml08a19s04Bodily painderived
ml08a19s05Vitality / fatiguederived
ml08a19s06Social functioningderived
ml08a19s07Role functioning - emotionalderived
ml08a19s08Mental health / well beingderived
ml08a19s09Physical component summaryderived
ml08a19s10Mental component summaryderived
ml08a07q01Do you have, or did you have in the past 12 months: asthma, chronic bronchitis, COPDdirectly measured
ml08a07q02Do you have, or did you have in the past 12 months: heart conditiondirectly measured
ml08a07q03Do you have, or did you have in the past 12 months: high blood pressuredirectly measured
ml08a07q04Do you have, or did you have in the past 12 months: strokedirectly measured
ml08a07q05Do you have, or did you have in the past 12 months: kidney diseasedirectly measured
ml08a07q06Do you have, or did you have in the past 12 months: diabetesdirectly measured
ml08a07q07Do you have, or did you have in the past 12 months: malignanciesdirectly measured
ml08a07q08Do you have, or did you have in the past 12 months: arthritisdirectly measured
ml08a07q09Do you have, or did you have in the past 12 months: skin conditiondirectly measured
ml08a07q10Do you have, or did you have in the past 12 months: liver diseasedirectly measured
ml08a07q11Do you have, or did you have in the past 12 months: thyroid diseasedirectly measured
ml08a07q12You haven't had any of the above in the past 12 months.directly measured
ml08a25q01I learned something about life because of having had cancerdirectly measured
ml08a25q02Having had cancer makes me feel unsure about my futuredirectly measured
ml08a25q03I worry about my futuredirectly measured
ml08a25q04I am afraid to diedirectly measured
ml08a25q05I feel like time in my life is running outdirectly measured
ml08a25q06Having had cancer has made me realize that time is preciousdirectly measured
ml08a25q07ving had cancer has strengthened my religious faith or my sense of spiritualitydirectly measured
ml08a25q08I do not take my body for granted since the cancerdirectly measured
ml08a25q09Having had cancer has made me more concerned about my healthdirectly measured
ml08a25q10I am more aware of physical problems or changes in my body since having had cancerdirectly measured
ml08a25q11I worry about my healthdirectly measured
ml08a25q12I worry about the cancer coming back or about getting another cancerdirectly measured
ml08a25q13New symptoms (aches, pains, getting sick or the flu) make me worry about the cancer coming backdirectly measured
ml08a25q14I am concerned that my energy has not returned to what it was before I had cancerdirectly measured
ml08a25q15I am bothered that my body cannot do what it could before having had cancerdirectly measured
ml08a25q16I worry about how my body looksdirectly measured
ml08a25q17I feel disfigureddirectly measured
ml08a25q18I sometimes wear clothing to cover up parts of my body I don’t want others to seedirectly measured
ml08a25q19Having had cancer has made me take better care of myself (my health)directly measured
ml08a25q20Having to pay attention to my physical health interferes with my lifedirectly measured
ml08a25q21I feel a sense of pride or accomplishment from surviving cancerdirectly measured
ml08a25q22I learned something about myself because of having had cancerdirectly measured
ml08a25q23I am angry about having had cancerdirectly measured
ml08a25q24I feel guilty for somehow being responsible for getting cancerdirectly measured
ml08a25q25I feel that I am a role model to other people with cancerdirectly measured
ml08a25q26Having had cancer has made me feel olddirectly measured
ml08a25q27I feel guilty today for not having been available to my family when I had cancerdirectly measured
ml08a25q28Having had cancer has been the most difficult experience in my lifedirectly measured
ml08a25q29I wonder why I got cancerdirectly measured
ml08a25q30It is important for me to know why I got cancerdirectly measured
ml08a25q31Having had cancer turned into a reason to make changes in my lifedirectly measured
ml08a25q32Because of cancer I have become better about expressing what I wantdirectly measured
ml08a25q33Because of cancer I have more confidence in myselfdirectly measured
ml08a25q34Having had cancer has given me direction in lifedirectly measured
ml08a25q35I place a higher value on my relationships with family or friends than I did before having had cancerdirectly measured
ml08a25q36I feel a special bond with people with cancerdirectly measured
ml08a25q37Because I had cancer I am more understanding of what other people may feel when they are seriously illdirectly measured
ml08a25q38Having had cancer has made me more willing to help othersdirectly measured
ml08a25q39I feel that I should give something back to others because I survived cancerdirectly measured
ml08a25q40Having had cancer keeps me from doing activities I enjoy (examples: travel, socializing, recreation, time with family)directly measured
ml08a25s01IOC physical: health awarenessderived
ml08a25s02IOC physical: body changesderived
ml08a25s03IOC psychological: positive self-evaluationderived
ml08a25s04IOC psychological: negative self-evaluationderived
ml08a25s05IOC existential: positive outlookderived
ml08a25s06IOC existential: negative outlookderived
ml08a25s07IOC social: life interferencesderived
ml08a25s08IOC social: value of relationshipsderived
ml08a25s09IOC meaning of cancerderived
ml08a25s10IOC health worryderived
ml08a25s11IOC higher order positive scalederived
ml08a25s12IOC higher order negative scalederived
ml08a21q01I make contact easily when I meet people.directly measured
ml08a21q02I often make a fuss about unimportant things.directly measured
ml08a21q03I often talk to strangers.directly measured
ml08a21q04I often feel unhappy.directly measured
ml08a21q05I am often irritated.directly measured
ml08a21q06I often feel inhibited in social interactions.directly measured
ml08a21q07I take a gloomy view on things.directly measured
ml08a21q08I find it hard to start a conversation.directly measured
ml08a21q09I am often in a bad mood.directly measured
ml08a21q10I am a closed kind of person.directly measured
ml08a21q11I would rather keep other people at a distance.directly measured
ml08a21q12I often find myself worrying about something.directly measured
ml08a21q13I am often down in the dumps.directly measured
ml08a21q14When socializing, I don\'t find the right things to talk about.directly measured
ml08a21s01social inhibitionderived
ml08a21s02negative affectivityderived
ml08a21s03type D personalityderived
ml08a40q01Is melanoma a disease that runs in your family?directly measured
ml08a40q02Does your scar from the melanoma hurt?directly measured
ml08a40q03Does your scar from the melanoma itch?directly measured
ml08a40q04Do you have a numb feeling around your scar from the melanoma?directly measured
ml08a40q05Is there swelling around your scar from the melanoma?directly measured
ml08a40q06Is there swelling in your arm or leg due to the surgery?directly measured
ml08a40q07In comparison to the period of time before the diagnoses of your melanoma, to what degree do you go on sun- and beach holidays?directly measured
ml08a40q08In comparison to the period of time before the diagnoses of your melanoma, to what degree do you still do your profession of daily affairs in the sun?directly measured
ml08a40q09In comparison to the period of time before the diagnoses of your melanoma, to what degree do you still do recreation outdoors in the sun? (Riding a bike, hiking, gardening, exercising)directly measured
ml08a40q10In comparison to the period of time before the diagnoses of your melanoma, how fearful are you now for the effects of the sun on your own skin?directly measured
ml08a40q11In comparison to the period of time before the diagnoses of your melanoma, how fearful are you now for the effects of the sun on your partners skin? (0 = if not applicable)directly measured
ml08a40q12In comparison to the period of time before the diagnoses of your melanoma, how fearful are you now for the effects of the sun on your childrens skin? (0 = if not applicable)directly measured
ml08a40q13In comparison to the period of time before the diagnoses of your melanoma, to what degree do you now protect your skin from the sun by staying in the shadow?directly measured
ml08a40q14In comparison to the period of time before the diagnoses of your melanoma, to what degree do you now protect your skin from the sun by adjusting your clothes? (For example by wearing long sleeves, trouwers, caps and hats)directly measured
ml08a40q15In comparison to the period of time before the diagnoses of your melanoma, to what degree do you now protect your skin from the sun by applying sunscreen?directly measured
ml08a40q16When do you apply sunscreen?directly measured
ml08a40q17How often do you apply sunscreen?directly measured
ml08a40q18What factor sunscreen do you use?directly measured
ml08a05q01Who diagnosed your melanoma?directly measured
ml08a05q02Who removed your melanoma?directly measured
ml08a05q03How many times did you have contact with your general practitioner in the past 12 months?directly measured
ml08a05q04How many of these contact moments had to do with your melanoma or the aftermath of your melanoma?directly measured
ml08a05q05How many times did you have contact with your specialist in the past 12 months?directly measured
ml08a05q06How many of these contact moments had to do with your melanoma or the aftermath of your melanoma?directly measured
ml08a05q07Do you still have follow up appointments for your melanoma?directly measured
ml08a05q08Do you still have or did you have follow up appointments with your General Practitioner?directly measured
ml08a05q09Do you still have or did you have follow up appointments with a dermatologist (skin doctor)?directly measured
ml08a05q10Do you still have or did you have follow up appointments with a (plastic) surgeon?directly measured
ml08a05q11Do you still have or did you have follow up appointments with a internist or oncologist?directly measured
ml08a05q12Do you still have or did you have follow up appointments with someone else?directly measured
ml08a05q13During these follow up appointments, how often did you have to undress fully so that your whole body could be examined?directly measured
ml08a05q14During these follow up appointments how often was your scar of the melanoma examined?directly measured
ml08a05q15During these follow up appointments how often was there felt for nodes?directly measured
ml08a05q16After your were diagnosed with melanoma, how many non-malignant birthmarks were preventatively (precautionary) removed?directly measured
ml08a05q17Did you discuss with your dermatologist how often you have to come back from this moment on?directly measured
ml08a05q18Do you feel comfortable with this follow up scheme?directly measured
ml08a05q19In general, how do or did you feel about the follow up appointments?directly measured
ml08a05q20Did you get extra care after the treatment of your melanoma from a psychologist?directly measured
ml08a05q21Did you get extra care after the treatment of your melanoma from a social worker?directly measured
ml08a05q22Did you get extra pastoral care after the treatment of your melanoma?directly measured
ml08a05q23Did you get extra care after the treatment of your melanoma from a General Practitioner?directly measured
ml08a05q24Did you get extra care after the treatment of your melanoma from a physiotherapist?directly measured
ml08a05q25Did you get extra care after the treatment of your melanoma from alternative or complementary therapy?directly measured
ml08a05q26Did you get extra care after the treatment of your melanoma from an oncological nurse?directly measured
ml08a05q27Did you get extra care after the treatment of your melanoma from a peer group?directly measured
ml08a05q28Did you get extra care after the treatment of your melanoma from a medical specialist (for example a dermatologist, internist, surgeon)?directly measured
ml08a05q29Did you want extra care after the treatment of your melanoma?directly measured
ml08a05q30In general, how did you feel about the health care you received from the moment you were diagnosed with melanoma until today?directly measured
ml08a26q01During your current disease or treatment, how much information have you received on the diagnoses of your disease?directly measured
ml08a26q02During your current disease or treatment, how much information have you received on the extent (spread) of your disease?directly measured
ml08a26q03During your current disease or treatment, how much information have you received on the possible causes of your disease?directly measured
ml08a26q04During your current disease or treatment, how much information have you received on whether the disease is under control?directly measured
ml08a26q05During your current disease or treatment, how much information have you received on the purpose of any medical tests your have had or may under go?directly measured
ml08a26q06During your current disease or treatment, how much information have you received on the procedures of the medical tests?directly measured
ml08a26q07During your current disease or treatment, how much information have you received on the results of the medical tests you have already received?directly measured
ml08a26q08During your current disease or treatment, how much information have you received on the medical treatment (chemotherapy, radiotherapy, surgery or other treatment modality)?directly measured
ml08a26q09During your current disease or treatment, how much information have you received on the non-medical treatment (for example herbal therapy, hemeopathy, relaxation therapy)?directly measured
ml08a26q10During your current disease or treatment, how much information have you received on the expected benefit of the treatment?directly measured
ml08a26q11During your current disease or treatment, how much information have you received on the possible side-effects of your treatment?directly measured
ml08a26q12During your current disease or treatment, how much information have you received on the expected effects of the treatment on disease symptoms?directly measured
ml08a26q13During your current disease or treatment, how much information have you received on the effects of the treatment on social and family life?directly measured
ml08a26q14During your current disease or treatment, how much information have you received on the effects of the treatment on sexual activity?directly measured
ml08a26q15During 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)?directly measured
ml08a26q16During your current disease or treatment, how much information have you received on rehabilitation services (e.g. physiotherapy, occupational therapy)?directly measured
ml08a26q17During your current disease or treatment, how much information have you received on aspects of managing your illness at home?directly measured
ml08a26q18During your current disease or treatment, how much information have you received on possible professional psychological support?directly measured
ml08a26q19During your current disease or treatment, how much information have you received on different places of care (hospitals / outpatient services / home)?directly measured
ml08a26q20During 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..)?directly measured
ml08a26q21Have you received written information?directly measured
ml08a26q22Have you received information on CD or tape / video?directly measured
ml08a26q23Were you satisfied with the amount of information you received?directly measured
ml08a26q24Do you wish to receive more information?directly measured
ml08a26q25Do your wish that you had received less information?directly measured
ml08a26q26Overall had the information you have received been helpful?directly measured
ml08a26q27Do you use the internet?directly measured
ml08a26q28Did you use the internet to find information about melanoma?directly measured
ml08a26s01information about the diseasederived
ml08a26s02information about medical testsderived
ml08a26s03information about treatmentsderived
ml08a26s04information about other servicesderived
ml08a26s09satisfaction with the information receivedderived
ml08a26s12overall the information has been helpfulderived

Questions

Questionnaire: Life after the diagnosis of melanoma

The questionnaire was originally conducted in Dutch

Browse Life after the diagnosis of melanoma

Response Information

Response Overview
The questionnaire was submitted to 699 patients who were diagnosed with melanoma between 1998 and 2007. 562 patients completed the questionnaire.

Because of the risk of traceability of individuals 6 records, of which 3 were respondents, have been removed from the dataset.
The risk was determined to be too high for variable ml08a01catageinc:
-    1 record in category 1: <= 15 years
-    3 records in category 2: >15 years and <=20 years
The risk was determined to be too high for variable ml08a01catageques:
-    2 records in category 3: >20 years and <=25 years
These records have been removed completely, not only for this variable but for all variables.
Collection Events
Period
01-02-2008 to 30-04-2008
Sample
Patients diagnosed with melanoma between 1998 and 2007 in the southern region of the Netherlands
Collection Mode
paper-and-pencil survey
Fieldwork Note
A reminder was sent once to non-respondents