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
View Documentation
Codebook in English
Variables
Variable name | Variable Label | Variable Type |
---|---|---|
ml08a01pat_id | Study number | preloaded |
ml08a01response | Response status | derived |
ml08a01gend | Gender | preloaded |
ml08a01ageques | Age category at time of questionnaire (February 2008) | constructed |
ml08a01ageinc | Age category at time of diagnosis | constructed |
ml08a01timediag | Time passed since diagnosis | constructed |
ml08a01ses | Social Economic Status in 3(4) categories | preloaded |
ml08a01syst | Systemic therapy | preloaded |
ml08a01chemo | Chemotherapy | preloaded |
ml08a01horm | Hormonal therapy | preloaded |
ml08a01immuno | Immunotherapy | preloaded |
ml08a01surg | Surgery | preloaded |
ml08a01radioth | Radiotherapy | preloaded |
ml08a01breslow | Breslow stage | preloaded |
ml08a01stage | Stage | preloaded |
ml08a02q01 | Do your grandparents come from The Netherlands? | directly measured |
ml08a02q02 | Do your grandparents come from another European country? | directly measured |
ml08a02q03 | Do your grandparents come from Asia? | directly measured |
ml08a02q04 | Do your grandparents come from North Africa? | directly measured |
ml08a02q05 | Do your grandparents come from Central / South Africa? | directly measured |
ml08a02q06 | Do your grandparents come from North / South America? | directly measured |
ml08a02q07 | What is currently your marital status? | directly measured |
ml08a02q08 | Do you currently have a steady partner? | directly measured |
ml08a02q09 | Do you have children? | directly measured |
ml08a02q10 | Do you live in the same house as your child(ren)? | directly measured |
ml08a02q11 | Indicate below which is your highest education level. | directly measured |
ml08a06q01 | I work 1 - 16 hours a week | directly measured |
ml08a06q02 | I work 17 - 32 hours a week | directly measured |
ml08a06q03 | I work 33 - 40 hours a week | directly measured |
ml08a06q04 | I work more than 40 hours a week | directly measured |
ml08a06q05 | I have no job | directly measured |
ml08a06q06 | I am looking for a job | directly measured |
ml08a06q07 | I am disabled | directly measured |
ml08a06q08 | I am retired | directly measured |
ml08a06q09 | I am a housewife / man | directly measured |
ml08a06q10 | I am a student | directly measured |
ml08a06q11 | Which changes have you experienced in your work situation due to cancer? | directly measured |
ml08a06q12 | Did you have trouble finding (additional) health insurance, because of cancer? | directly measured |
ml08a06q13 | Have you experienced problems with getting life insurance, because of cancer? | directly measured |
ml08a06q14 | Have you experienced problems with getting disability insurance, because of cancer? | directly measured |
ml08a06q15 | Have you experienced problems with getting mortgage, because of cancer? | directly measured |
ml08a19q01 | In general, would you say your health is: | directly measured |
ml08a19q02 | Compared to one year ago, how would you rate your health in general now? | directly measured |
ml08a19q03 | Does 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 |
ml08a19q04 | Does 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 |
ml08a19q05 | Does your health now limit you in activities, such as lifting or carrying groceries and if so, how much? | directly measured |
ml08a19q06 | Does your health now limit you in activities, such as climbing several flights of stairs and if so, how much? | directly measured |
ml08a19q07 | Does your health now limit you in activities, such as climbing one flight of stairs and if so, how much? | directly measured |
ml08a19q08 | Does your health now limit you in activities, such as bending, kneeling or stooping and if so, how much? | directly measured |
ml08a19q09 | Does your health now limit you in activities, such as walking more than a mile and if so, how much? | directly measured |
ml08a19q10 | Does your health now limit you in activities, such as walking several blocks and if so, how much? | directly measured |
ml08a19q11 | Does your health now limit you in activities, such as walking one block and if so, how much? | directly measured |
ml08a19q12 | Does your health now limit you in activities, such as bathing or dressing yourself and if so, how much? | directly measured |
ml08a19q13 | During 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 |
ml08a19q14 | During the past 4 weeks, did you accomplish less than you would have liked to as a result of your physical health? | directly measured |
ml08a19q15 | During the past 4 weeks, were you limited in the kind of work or other activities as a result of your physical health? | directly measured |
ml08a19q16 | During the past 4 weeks, did you have difficulties performing the work or other activities as a result of your physical health? | directly measured |
ml08a19q17 | During 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 |
ml08a19q18 | During the past 4 weeks, did you accomplish less than you would have liked to as a result of your emotional problems? | directly measured |
ml08a19q19 | During 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 |
ml08a19q20 | During 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 |
ml08a19q21 | How much physical pain have you had during the past 4 weeks? | directly measured |
ml08a19q22 | During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)? | directly measured |
ml08a19q23 | How much of the time during the past 4 weeks did you feel full of pep? | directly measured |
ml08a19q24 | How much of the time during the past 4 weeks have you been a very nervous person? | directly measured |
ml08a19q25 | How 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 |
ml08a19q26 | How much of the time during the past 4 weeks have you felt calm and peaceful? | directly measured |
ml08a19q27 | How much of the time during the past 4 weeks did you have a lot of energy? | directly measured |
ml08a19q28 | How much of the time during the past 4 weeks have you felt downhearted and blue? | directly measured |
ml08a19q29 | How much of the time during the past 4 weeks did you feel worn out? | directly measured |
ml08a19q30 | How much of the time during the past 4 weeks have you been a happy person? | directly measured |
ml08a19q31 | How much of the time during the past 4 weeks did you feel tired? | directly measured |
ml08a19q32 | During 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 |
ml08a19q33 | I seem to get sick a little easier than other people | directly measured |
ml08a19q34 | I am as healthy as anybody I know | directly measured |
ml08a19q35 | I expect my health to get worse | directly measured |
ml08a19q36 | My health is excellent | directly measured |
ml08a19s01 | General health | derived |
ml08a19s02 | Physical function | derived |
ml08a19s03 | Role functioning - physical | derived |
ml08a19s04 | Bodily pain | derived |
ml08a19s05 | Vitality / fatigue | derived |
ml08a19s06 | Social functioning | derived |
ml08a19s07 | Role functioning - emotional | derived |
ml08a19s08 | Mental health / well being | derived |
ml08a19s09 | Physical component summary | derived |
ml08a19s10 | Mental component summary | derived |
ml08a07q01 | Do you have, or did you have in the past 12 months: asthma, chronic bronchitis, COPD | directly measured |
ml08a07q02 | Do you have, or did you have in the past 12 months: heart condition | directly measured |
ml08a07q03 | Do you have, or did you have in the past 12 months: high blood pressure | directly measured |
ml08a07q04 | Do you have, or did you have in the past 12 months: stroke | directly measured |
ml08a07q05 | Do you have, or did you have in the past 12 months: kidney disease | directly measured |
ml08a07q06 | Do you have, or did you have in the past 12 months: diabetes | directly measured |
ml08a07q07 | Do you have, or did you have in the past 12 months: malignancies | directly measured |
ml08a07q08 | Do you have, or did you have in the past 12 months: arthritis | directly measured |
ml08a07q09 | Do you have, or did you have in the past 12 months: skin condition | directly measured |
ml08a07q10 | Do you have, or did you have in the past 12 months: liver disease | directly measured |
ml08a07q11 | Do you have, or did you have in the past 12 months: thyroid disease | directly measured |
ml08a07q12 | You haven't had any of the above in the past 12 months. | directly measured |
ml08a25q01 | I learned something about life because of having had cancer | directly measured |
ml08a25q02 | Having had cancer makes me feel unsure about my future | directly measured |
ml08a25q03 | I worry about my future | directly measured |
ml08a25q04 | I am afraid to die | directly measured |
ml08a25q05 | I feel like time in my life is running out | directly measured |
ml08a25q06 | Having had cancer has made me realize that time is precious | directly measured |
ml08a25q07 | ving had cancer has strengthened my religious faith or my sense of spirituality | directly measured |
ml08a25q08 | I do not take my body for granted since the cancer | directly measured |
ml08a25q09 | Having had cancer has made me more concerned about my health | directly measured |
ml08a25q10 | I am more aware of physical problems or changes in my body since having had cancer | directly measured |
ml08a25q11 | I worry about my health | directly measured |
ml08a25q12 | I worry about the cancer coming back or about getting another cancer | directly measured |
ml08a25q13 | New symptoms (aches, pains, getting sick or the flu) make me worry about the cancer coming back | directly measured |
ml08a25q14 | I am concerned that my energy has not returned to what it was before I had cancer | directly measured |
ml08a25q15 | I am bothered that my body cannot do what it could before having had cancer | directly measured |
ml08a25q16 | I worry about how my body looks | directly measured |
ml08a25q17 | I feel disfigured | directly measured |
ml08a25q18 | I sometimes wear clothing to cover up parts of my body I don’t want others to see | directly measured |
ml08a25q19 | Having had cancer has made me take better care of myself (my health) | directly measured |
ml08a25q20 | Having to pay attention to my physical health interferes with my life | directly measured |
ml08a25q21 | I feel a sense of pride or accomplishment from surviving cancer | directly measured |
ml08a25q22 | I learned something about myself because of having had cancer | directly measured |
ml08a25q23 | I am angry about having had cancer | directly measured |
ml08a25q24 | I feel guilty for somehow being responsible for getting cancer | directly measured |
ml08a25q25 | I feel that I am a role model to other people with cancer | directly measured |
ml08a25q26 | Having had cancer has made me feel old | directly measured |
ml08a25q27 | I feel guilty today for not having been available to my family when I had cancer | directly measured |
ml08a25q28 | Having had cancer has been the most difficult experience in my life | directly measured |
ml08a25q29 | I wonder why I got cancer | directly measured |
ml08a25q30 | It is important for me to know why I got cancer | directly measured |
ml08a25q31 | Having had cancer turned into a reason to make changes in my life | directly measured |
ml08a25q32 | Because of cancer I have become better about expressing what I want | directly measured |
ml08a25q33 | Because of cancer I have more confidence in myself | directly measured |
ml08a25q34 | Having had cancer has given me direction in life | directly measured |
ml08a25q35 | I place a higher value on my relationships with family or friends than I did before having had cancer | directly measured |
ml08a25q36 | I feel a special bond with people with cancer | directly measured |
ml08a25q37 | Because I had cancer I am more understanding of what other people may feel when they are seriously ill | directly measured |
ml08a25q38 | Having had cancer has made me more willing to help others | directly measured |
ml08a25q39 | I feel that I should give something back to others because I survived cancer | directly measured |
ml08a25q40 | Having had cancer keeps me from doing activities I enjoy (examples: travel, socializing, recreation, time with family) | directly measured |
ml08a25s01 | IOC physical: health awareness | derived |
ml08a25s02 | IOC physical: body changes | derived |
ml08a25s03 | IOC psychological: positive self-evaluation | derived |
ml08a25s04 | IOC psychological: negative self-evaluation | derived |
ml08a25s05 | IOC existential: positive outlook | derived |
ml08a25s06 | IOC existential: negative outlook | derived |
ml08a25s07 | IOC social: life interferences | derived |
ml08a25s08 | IOC social: value of relationships | derived |
ml08a25s09 | IOC meaning of cancer | derived |
ml08a25s10 | IOC health worry | derived |
ml08a25s11 | IOC higher order positive scale | derived |
ml08a25s12 | IOC higher order negative scale | derived |
ml08a21q01 | I make contact easily when I meet people. | directly measured |
ml08a21q02 | I often make a fuss about unimportant things. | directly measured |
ml08a21q03 | I often talk to strangers. | directly measured |
ml08a21q04 | I often feel unhappy. | directly measured |
ml08a21q05 | I am often irritated. | directly measured |
ml08a21q06 | I often feel inhibited in social interactions. | directly measured |
ml08a21q07 | I take a gloomy view on things. | directly measured |
ml08a21q08 | I find it hard to start a conversation. | directly measured |
ml08a21q09 | I am often in a bad mood. | directly measured |
ml08a21q10 | I am a closed kind of person. | directly measured |
ml08a21q11 | I would rather keep other people at a distance. | directly measured |
ml08a21q12 | I often find myself worrying about something. | directly measured |
ml08a21q13 | I am often down in the dumps. | directly measured |
ml08a21q14 | When socializing, I don\'t find the right things to talk about. | directly measured |
ml08a21s01 | social inhibition | derived |
ml08a21s02 | negative affectivity | derived |
ml08a21s03 | type D personality | derived |
ml08a40q01 | Is melanoma a disease that runs in your family? | directly measured |
ml08a40q02 | Does your scar from the melanoma hurt? | directly measured |
ml08a40q03 | Does your scar from the melanoma itch? | directly measured |
ml08a40q04 | Do you have a numb feeling around your scar from the melanoma? | directly measured |
ml08a40q05 | Is there swelling around your scar from the melanoma? | directly measured |
ml08a40q06 | Is there swelling in your arm or leg due to the surgery? | directly measured |
ml08a40q07 | In 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 |
ml08a40q08 | In 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 |
ml08a40q09 | In 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 |
ml08a40q10 | In 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 |
ml08a40q11 | In 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 |
ml08a40q12 | In 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 |
ml08a40q13 | In 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 |
ml08a40q14 | In 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 |
ml08a40q15 | In 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 |
ml08a40q16 | When do you apply sunscreen? | directly measured |
ml08a40q17 | How often do you apply sunscreen? | directly measured |
ml08a40q18 | What factor sunscreen do you use? | directly measured |
ml08a05q01 | Who diagnosed your melanoma? | directly measured |
ml08a05q02 | Who removed your melanoma? | directly measured |
ml08a05q03 | How many times did you have contact with your general practitioner in the past 12 months? | directly measured |
ml08a05q04 | How many of these contact moments had to do with your melanoma or the aftermath of your melanoma? | directly measured |
ml08a05q05 | How many times did you have contact with your specialist in the past 12 months? | directly measured |
ml08a05q06 | How many of these contact moments had to do with your melanoma or the aftermath of your melanoma? | directly measured |
ml08a05q07 | Do you still have follow up appointments for your melanoma? | directly measured |
ml08a05q08 | Do you still have or did you have follow up appointments with your General Practitioner? | directly measured |
ml08a05q09 | Do you still have or did you have follow up appointments with a dermatologist (skin doctor)? | directly measured |
ml08a05q10 | Do you still have or did you have follow up appointments with a (plastic) surgeon? | directly measured |
ml08a05q11 | Do you still have or did you have follow up appointments with a internist or oncologist? | directly measured |
ml08a05q12 | Do you still have or did you have follow up appointments with someone else? | directly measured |
ml08a05q13 | During these follow up appointments, how often did you have to undress fully so that your whole body could be examined? | directly measured |
ml08a05q14 | During these follow up appointments how often was your scar of the melanoma examined? | directly measured |
ml08a05q15 | During these follow up appointments how often was there felt for nodes? | directly measured |
ml08a05q16 | After your were diagnosed with melanoma, how many non-malignant birthmarks were preventatively (precautionary) removed? | directly measured |
ml08a05q17 | Did you discuss with your dermatologist how often you have to come back from this moment on? | directly measured |
ml08a05q18 | Do you feel comfortable with this follow up scheme? | directly measured |
ml08a05q19 | In general, how do or did you feel about the follow up appointments? | directly measured |
ml08a05q20 | Did you get extra care after the treatment of your melanoma from a psychologist? | directly measured |
ml08a05q21 | Did you get extra care after the treatment of your melanoma from a social worker? | directly measured |
ml08a05q22 | Did you get extra pastoral care after the treatment of your melanoma? | directly measured |
ml08a05q23 | Did you get extra care after the treatment of your melanoma from a General Practitioner? | directly measured |
ml08a05q24 | Did you get extra care after the treatment of your melanoma from a physiotherapist? | directly measured |
ml08a05q25 | Did you get extra care after the treatment of your melanoma from alternative or complementary therapy? | directly measured |
ml08a05q26 | Did you get extra care after the treatment of your melanoma from an oncological nurse? | directly measured |
ml08a05q27 | Did you get extra care after the treatment of your melanoma from a peer group? | directly measured |
ml08a05q28 | Did you get extra care after the treatment of your melanoma from a medical specialist (for example a dermatologist, internist, surgeon)? | directly measured |
ml08a05q29 | Did you want extra care after the treatment of your melanoma? | directly measured |
ml08a05q30 | In general, how did you feel about the health care you received from the moment you were diagnosed with melanoma until today? | directly measured |
ml08a26q01 | During your current disease or treatment, how much information have you received on the diagnoses of your disease? | directly measured |
ml08a26q02 | During your current disease or treatment, how much information have you received on the extent (spread) of your disease? | directly measured |
ml08a26q03 | During your current disease or treatment, how much information have you received on the possible causes of your disease? | directly measured |
ml08a26q04 | During your current disease or treatment, how much information have you received on whether the disease is under control? | directly measured |
ml08a26q05 | During 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 |
ml08a26q06 | During your current disease or treatment, how much information have you received on the procedures of the medical tests? | directly measured |
ml08a26q07 | During your current disease or treatment, how much information have you received on the results of the medical tests you have already received? | directly measured |
ml08a26q08 | During your current disease or treatment, how much information have you received on the medical treatment (chemotherapy, radiotherapy, surgery or other treatment modality)? | directly measured |
ml08a26q09 | During 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 |
ml08a26q10 | During your current disease or treatment, how much information have you received on the expected benefit of the treatment? | directly measured |
ml08a26q11 | During your current disease or treatment, how much information have you received on the possible side-effects of your treatment? | directly measured |
ml08a26q12 | During your current disease or treatment, how much information have you received on the expected effects of the treatment on disease symptoms? | directly measured |
ml08a26q13 | During your current disease or treatment, how much information have you received on the effects of the treatment on social and family life? | directly measured |
ml08a26q14 | During your current disease or treatment, how much information have you received on the effects of the treatment on sexual activity? | directly measured |
ml08a26q15 | 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)? | directly measured |
ml08a26q16 | During your current disease or treatment, how much information have you received on rehabilitation services (e.g. physiotherapy, occupational therapy)? | directly measured |
ml08a26q17 | During your current disease or treatment, how much information have you received on aspects of managing your illness at home? | directly measured |
ml08a26q18 | During your current disease or treatment, how much information have you received on possible professional psychological support? | directly measured |
ml08a26q19 | During your current disease or treatment, how much information have you received on different places of care (hospitals / outpatient services / home)? | directly measured |
ml08a26q20 | 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..)? | directly measured |
ml08a26q21 | Have you received written information? | directly measured |
ml08a26q22 | Have you received information on CD or tape / video? | directly measured |
ml08a26q23 | Were you satisfied with the amount of information you received? | directly measured |
ml08a26q24 | Do you wish to receive more information? | directly measured |
ml08a26q25 | Do your wish that you had received less information? | directly measured |
ml08a26q26 | Overall had the information you have received been helpful? | directly measured |
ml08a26q27 | Do you use the internet? | directly measured |
ml08a26q28 | Did you use the internet to find information about melanoma? | directly measured |
ml08a26s01 | information about the disease | derived |
ml08a26s02 | information about medical tests | derived |
ml08a26s03 | information about treatments | derived |
ml08a26s04 | information about other services | derived |
ml08a26s09 | satisfaction with the information received | derived |
ml08a26s12 | overall the information has been helpful | derived |
Questions
Questionnaire: Life after the diagnosis of melanoma
The questionnaire was originally conducted in Dutch
Browse Life after the diagnosis of melanomaResponse 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
Publications
Personality is associated with health status and impact of cancer among melanoma survivors European Journal of Cancer; Floortje Mols
et al.
Melanoma patients receive more follow-up care than current guideline recommendations: a study of 546 patients from the general Dutch population Journal of the European Academy of Dermatology and Venereology; C. Holterhues
et al.
Impact of Melanoma on Patients’ Lives Among 562 Survivors: A Dutch Population-Based Study Archives of Dermatology; Cynthia Holterhues
et al.
Melanoma survivors are dissatisfied with perceived information about their diagnosis, treatment and follow-up care British Journal of Dermatology; O. Husson
et al.
Multiple primary cancer survivors have poorer health status and well-being than single primary cancer survivors: a study from the population-based PROFILES registry Psycho-Oncology; Melissa S.Y. Thong
et al.
Variation in fatigue among 6011 (long-term) cancer survivors and a normative population: a study from the population-based PROFILES registry. Support Cancer Care; Husson O
et al.
Does fear of cancer recurrence differ between cancer types? A study from the population-based PROFILES registry. Psycho-oncology; van de Wal M.
et al.