Single Wave Study
General Information
Title
Life after the diagnosis of non-Hodgkin lymphoma 2004
Project Number
3.1
Abstract
The questionnaire focuses on health and health complaints related to non-Hodgkin lymphoma, use of care and satisfaction with care.
Longitudinal Type
Single Wave Study
Begin date
01-11-2004
End date
31-05-2005
Topics
Researcher
Floortje Mols, Lonneke van de Poll - Franse
Publisher
IKNL Profiles study
Copyright
Copyright IKNL Profiles study
Funding Organization
Beunke Fund for Lymphoma Research
Interzol clinical study group for Heamato-oncology
Foundation for the Promotion of Academic Training and Research in Health Care (SWOOG)
Interzol clinical study group for Heamato-oncology
Foundation for the Promotion of Academic Training and Research in Health Care (SWOOG)
Codebooks and other materials
View Documentation
Codebook in English
Variables
| Variable name | Variable Label | Variable Type |
|---|---|---|
| nhl04a01pat_id | Patiënt identifier | preloaded |
| Nhl04a01gend | Gender | preloaded |
| nhl04a01timediag | Time passed since diagnosis | constructed |
| nhl04a01catageques | Age category at time of study | constructed |
| nhl04a01catincage | Age category at time of diagnosis | constructed |
| nhl04a01stage | Stage of disease | preloaded |
| nhl04a01grade | Grade of tumor | preloaded |
| nhl04a01response | Response | derived |
| nhl04a01morf | Morfology of the tumor | preloaded |
| nhl04a01syst | Systemic therapy | preloaded |
| nhl04a01surg | Surgical treatment | preloaded |
| nhl04a01radioth | Radiotherapy | preloaded |
| nhl04a01ther_oth | Other therapy | preloaded |
| nhl04a01ther_no | No therapy | preloaded |
| nhl04a01unknown | Treatment unknown | preloaded |
| nhl04a01comb | Combination of treatments | preloaded |
| nhl04a01ses | SES value (Social Economic Status) | preloaded |
| nhl04a02q01 | What is currently your marital status? | directly measured |
| nhl04a02q02 | Do you currentely have a steady partner? | directly measured |
| nhl04a02q03 | Do you have children? | directly measured |
| nhl04a02q04 | Do you live in the same house with your child(ren)? | directly measured |
| nhl04a02q05 | Did cancer affect the relationship with your (former) partner? | directly measured |
| nhl04a02q06 | Indicate below which is your highest education level | directly measured |
| nhl04a06q01 | I have no job | directly measured |
| nhl04a06q02 | I am looking for a job | directly measured |
| nhl04a06q03 | I am a student | directly measured |
| nhl04a06q04 | I am a housewife/man | directly measured |
| nhl04a06q05 | I am disabled | directly measured |
| nhl04a06q06 | I am retired | directly measured |
| nhl04a06q07 | I work 1-16 hours a week | directly measured |
| nhl04a06q08 | I work 17-32 hours a week | directly measured |
| nhl04a06q09 | I work 33-40 hours a week | directly measured |
| nhl04a06q10 | I work more than 40 hours a week | directly measured |
| nhl04a06q11 | Nothing has changed | directly measured |
| nhl04a06q12 | I have been retrained due to cancer | directly measured |
| nhl04a06q13 | I have quit working due to cancer | directly measured |
| nhl04a06q14 | I am working more hours due to cancer | directly measured |
| nhl04a06q15 | I am working less hours due to cancer | directly measured |
| nhl04a06q16 | I am disabled due to cancer | directly measured |
| nhl04a06q17 | I have retired early | directly measured |
| nhl04a06q18 | I have been fired due to cancer | directly measured |
| nhl04a06q19 | Did you have trouble finding (additional) health insurance, because of cancer? | directly measured |
| nhl04a06q20 | Do you have experienced problems with getting life insurance, because of cancer? | directly measured |
| nhl04a06q21 | Did you have experienced problems with getting mortgage, because of cancer? | directly measured |
| nhl04a05q01 | How many times did you have contact with your general practitioner in the past 12 months? | directly measured |
| nhl04a05q02 | How many times did you have contact with your specialist in the past 12 months? | directly measured |
| nhl04a05q03 | How many of these contact moments had to do with cancer or the aftermath of cancer? | directly measured |
| nhl04a05q04 | Do you still have follow up appointments? | directly measured |
| nhl04a05q05 | What do you or did you, in general, think about the follow up appointments? | directly measured |
| nhl04a05q06 | Did you have a need for care after the treatment of your illness? | directly measured |
| nhl04a05q07 | Did you receive care after the treatment of your illness? | directly measured |
| nhl04a05q08 | Psychologist | directly measured |
| nhl04a05q09 | Sexologist | directly measured |
| nhl04a05q10 | Social worker | directly measured |
| nhl04a05q11 | Pastoral care | directly measured |
| nhl04a05q12 | General practitioner | directly measured |
| nhl04a05q13 | Dietist | directly measured |
| nhl04a05q14 | Physiotherapist | directly measured |
| nhl04a05q15 | Recovery and Balance | directly measured |
| nhl04a05q16 | Creative therapy | directly measured |
| nhl04a05q17 | Oncological nurse | directly measured |
| nhl04a05q18 | Peer group | directly measured |
| nhl04a05q19 | How was the aftercare of your illness in general? | directly measured |
| nhl04a05q20 | What do you think, in general, of the healtcare that you reveived from the moment you were diagnosed with cancer up to today? | directly measured |
| nhl04a32q01 | Do you currently suffer much from your illness? | directly measured |
| nhl04a07q01 | Do you have, or did you have in the past 12 months: asthma, chronic bronchitis, COPD | directly measured |
| nhl04a07q02 | Do you have, or did you have in the past 12 months: Heart condition | directly measured |
| nhl04a07q03 | Do you have, or did you have in the past 12 months: High blood pressure | directly measured |
| nhl04a07q04 | Do you have, or did you have in the past 12 months: Stroke | directly measured |
| nhl04a07q05 | Do you have, or did you have in the past 12 months: Kidney disease | directly measured |
| nhl04a07q06 | Do you have, or did you have in the past 12 months: Diabetes | directly measured |
| nhl04a07q07 | Do you have, or did you have in the past 12 months: Malignancies | directly measured |
| nhl04a07q08 | Do you have, or did you have in the past 12 months: Arthritis | directly measured |
| nhl04a07q09 | Do you have, or did you have in the past 12 months: Skin condition | directly measured |
| nhl04a07q10 | Do you have, or did you have in the past 12 months: Liver disease | directly measured |
| nhl04a07q11 | Do you have, or did you have in the past 12 months: Thyroid disease | directly measured |
| nhl04a07q12 | Do you have, or did you have in the past 12 months: Other condition | directly measured |
| nhl04a07q13 | I don’t have any of these diseases / conditions | directly measured |
| nhl04a07q14 | Do you use medication for the disease(s) that you have indicated in the previous question? | directly measured |
| nhl04a19q01 | In general, would you say your health is | directly measured |
| nhl04a19q02 | Compared to one year ago, how would you rate your health in general now? | directly measured |
| nhl04a19q03 | Vigorous activities, such as running, lifting heavy objects, participating in | directly measured |
| nhl04a19q04 | Moderate activities, such as moving a table, pushing a vacuum cleaner, swimming | directly measured |
| nhl04a19q05 | Lifting or carrying groceries | directly measured |
| nhl04a19q06 | Climbing several flights of stairs | directly measured |
| nhl04a19q07 | Climbing one flight of stairs | directly measured |
| nhl04a19q08 | Bending, kneeling or stooping | directly measured |
| nhl04a19q09 | Walking more than a mile | directly measured |
| nhl04a19q10 | Walking several blocks | directly measured |
| nhl04a19q11 | Walking one block | directly measured |
| nhl04a19q12 | Bathing or dressing yourself | directly measured |
| nhl04a19q13 | Cut down on the amount of time you spent on work or other activites | directly measured |
| nhl04a19q14 | Accomplished less than you would like | directly measured |
| nhl04a19q15 | Were limited in the kind of work or other activities | directly measured |
| nhl04a19q16 | Had difficulty performing the work or other activities (for example, it took extra effort) | directly measured |
| nhl04a19q17 | Cut down the amount of time you spent on work or other activities | directly measured |
| nhl04a19q18 | Accomplished less than you would like | directly measured |
| nhl04a19q19 | Didn’t do work or other activities as carefully as usual | directly measured |
| nhl04a19q20 | During the past 4 weeks, to what extent has your physical health or emotional problems interfered with your normal social activities with family, friends, neighbors or groups? | directly measured |
| nhl04a19q21 | How much physical pain have you had during the past 4 weeks? | directly measured |
| nhl04a19q22 | During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)? | directly measured |
| nhl04a19q23 | Did you feel full of pep? | directly measured |
| nhl04a19q24 | Have you been a very nervous person? | directly measured |
| nhl04a19q25 | Have you felt so down in the dumps that nothing could cheer you up? | directly measured |
| nhl04a19q26 | Have you felt calm and peaceful? | directly measured |
| nhl04a19q27 | Did you have a lot of energy? | directly measured |
| nhl04a19q28 | Have you felt downhearted and blue? | directly measured |
| nhl04a19q29 | Did you feel worn out? | directly measured |
| nhl04a19q30 | Have you been a happy person? | directly measured |
| nhl04a19q31 | Did you feel tired? | directly measured |
| nhl04a19q32 | 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 |
| nhl04a19q33 | I seem to get sick a little easier than other people | directly measured |
| nhl04a19q34 | I am as healthy as anybody I know | directly measured |
| nhl04a19q35 | I expect my health to get worse | directly measured |
| nhl04a19q36 | My health is excellent | directly measured |
| nhl04a19s01 | General health scale | derived |
| nhl04a19s02 | Physical functioning scale | derived |
| nhl04a19s03 | Role functioning – physical scale | derived |
| nhl04a19s04 | Bodily pain scale | derived |
| nhl04a19s05 | Vitality / Fatigue scale | derived |
| nhl04a19s06 | Social functioning scale | derived |
| nhl04a19s07 | Role functioning - emotional scale | derived |
| nhl04a19s08 | Mental health / well being scale | derived |
| nhl04a19s09 | Physical component summary scale | derived |
| nhl04a19s10 | Mental component summary scale | derived |
| nhl04a33q01 | Fatigue | directly measured |
| nhl04a33q02 | Appetite changes | directly measured |
| nhl04a33q03 | Aches or pain | directly measured |
| nhl04a33q04 | Sleep changes | directly measured |
| nhl04a33q05 | Constipation | directly measured |
| nhl04a33q06 | Nausea | directly measured |
| nhl04a33q07 | Menstruation | directly measured |
| nhl04a33q08 | Neuropathy | directly measured |
| nhl04a33q09 | Rate your overall physical health | directly measured |
| nhl04a33q10 | How difficult is it for you to cope today as a result of your disease and treatment? | directly measured |
| nhl04a33q11 | How good is your quality of life? | directly measured |
| nhl04a33q12 | How much happiness do you feel? | directly measured |
| nhl04a33q13 | Do you feel like you are in control of things in your life? | directly measured |
| nhl04a33q14 | How satisfying is your life? | directly measured |
| nhl04a33q15 | How is your present ability to concentrate or to remember things? | directly measured |
| nhl04a33q16 | How useful do you feel? | directly measured |
| nhl04a33q17 | Has your illness or treatment caused changes in your appearance? | directly measured |
| nhl04a33q18 | Has your illness or treatment caused changes in your self concept (the way you see yourself)? | directly measured |
| nhl04a33q19 | Initial diagnosis | directly measured |
| nhl04a33q20 | Cancer treatments (i.e. chemotherapy, radiation, or surgery) | directly measured |
| nhl04a33q21 | Time since my treatment was completed | directly measured |
| nhl04a33q22 | How much anxiety do you have? | directly measured |
| nhl04a33q23 | How much depression do you have? | directly measured |
| nhl04a33q24 | Future diagnostic tests | directly measured |
| nhl04a33q25 | A second cancer | directly measured |
| nhl04a33q26 | Recurrence or spreading (metastatis) of your cancer | directly measured |
| nhl04a33q27 | Dying | directly measured |
| nhl04a33q28 | How distressing has illness been for your family? | directly measured |
| nhl04a33q29 | Is the amount of support you receive from others sufficient to meet your needs? | directly measured |
| nhl04a33q30 | Is your continuing health care interfering with your personal relationships? | directly measured |
| nhl04a33q31 | Is your sexuality impacted by your illness? | directly measured |
| nhl04a33q32 | To what extent do you have worries about your fertility? | directly measured |
| nhl04a33q33 | To what degree has your illness and treatment interfered with your employment? | directly measured |
| nhl04a33q34 | To what degree has your illness and treatment interfered with your activities at home? | directly measured |
| nhl04a33q35 | How much isolation do you feel is caused by your illness or treatment? | directly measured |
| nhl04a33q36 | How much financial burden have you incurred as a result of your illness and treatment? | directly measured |
| nhl04a33q37 | To what extent do you have worries about family members getting cancer? | directly measured |
| nhl04a33q38 | How important to you is your participation in religious activities such as praying, going to church? | directly measured |
| nhl04a33q39 | How important to you are other spiritual activities such as meditation? | directly measured |
| nhl04a33q40 | How much has your spiritual life changed as a result of cancer diagnosis? | directly measured |
| nhl04a33q41 | How much uncertainty do you feel about your future? | directly measured |
| nhl04a33q42 | To what extent has your illness made positive changes in your life? | directly measured |
| nhl04a33q43 | Do you sense a purpose/mission for your life or a reason for being alive? | directly measured |
| nhl04a33q44 | How hopeful do you feel? | directly measured |
| nhl04a27q37 | Consequences for my partner | directly measured |
| nhl04a27q38 | Consequences for my children | directly measured |
| nhl04a34q01 | Size of the chosen sticker | directly measured |
| nhl04a34s01 | Distance in millimeters from the center of the sticker to the center of the yellow circle | derived |
| nhl04a33q45 | To what extent have you been bothered by “survival guilt� (that is, you felt guilty because you survived and others have not) | directly measured |
| nhl04a33s01 | Physical well-being scale | derived |
| nhl04a33s02 | Psychological well-being scale | derived |
| nhl04a33s03 | Social well-being scale | derived |
| nhl04a33s04 | Spiritual well-being scale | derived |
| nhl04a33s05 | Quality of life total scale | derived |
| nhl04a27q01 | Do you use the internet? | directly measured |
| nhl04a27q02 | How often do you use the internet? | directly measured |
| nhl04a27q03 | Sending and receiving e-mail | directly measured |
| nhl04a27q04 | Searching for information | directly measured |
| nhl04a27q05 | Participating in chat groups | directly measured |
| nhl04a27q06 | Asking questions to experts | directly measured |
| nhl04a27q07 | Participating in user groups | directly measured |
| nhl04a27q08 | Do you use the internet with regard to information about cancer and the consequences of cancer? | directly measured |
| nhl04a27q09 | Your doctor | directly measured |
| nhl04a27q10 | An internet doctor | directly measured |
| nhl04a27q11 | Peers | directly measured |
| nhl04a27q12 | Members of a discussion group | directly measured |
| nhl04a27q13 | Cancer | directly measured |
| nhl04a27q14 | Possible treatments | directly measured |
| nhl04a27q15 | Possible alternative therapies | directly measured |
| nhl04a27q16 | Where to find a good doctor | directly measured |
| nhl04a27q17 | What the best hospital is | directly measured |
| nhl04a27q18 | What patient groups have to offer | directly measured |
| nhl04a27q19 | Which activities there are in the region for patients | directly measured |
| nhl04a27q20 | Which trials/studies there are | directly measured |
| nhl04a27q21 | Treatment guidelines | directly measured |
| nhl04a27q22 | Peer groups | directly measured |
| nhl04a27q23 | What you can do yourself | directly measured |
| nhl04a27q24 | Consequences for my partner | directly measured |
| nhl04a27q25 | Consequences for my children | directly measured |
| nhl04a27q26 | Cancer | directly measured |
| nhl04a27q27 | Possible treatments | directly measured |
| nhl04a27q28 | Possible alternative therapies | directly measured |
| nhl04a27q29 | Where to find a good doctor | directly measured |
| nhl04a27q30 | What the best hospital is | directly measured |
| nhl04a27q31 | What patient groups have to offer | directly measured |
| nhl04a27q32 | Which activities there are in the region for patients | directly measured |
| nhl04a27q33 | Which trials/studies there are | directly measured |
| nhl04a27q34 | Treatment guidelines | directly measured |
| nhl04a27q35 | Peer groups | directly measured |
| nhl04a27q36 | What you can do yourself | directly measured |
Questions
Questionnaire: Life after the diagnosis of non-Hodgkin lymphoma
The questionnaire was originally conducted in Dutch.
Browse Life after the diagnosis of non-Hodgkin lymphomaResponse Information
Response Overview
The questionnaire was submitted to 360 patients of 18 years and older. 294 patients completed the questionnaire (reponse rate 82%).
Because of the risk of traceability of individuals 5 records have been removed from the dataset.
The risk was determined to be too high for variable nhl04a01catageques:
- 2 records in category 1: <= 15 years
- 3 records in category 2: >15 years and <=20 years
These records have been removed completely, not only for this variable but for all variables.
Collection Events
Period
01-11-2004 to 31-05-2005
Sample
Patients diagnosed with non-Hodgkin lymfoma between 1989 and 1998 in the southern region of the Netherlands
Collection Mode
paper-and-pencil survey
Fieldwork Note
A reminder was sent once to non-respondents.
Publications
Quality of Life Among Long-term Non-Hodgkin Lymphoma Survivors Cancer; Floortje Mols,
et al.
Health-related quality of life and health care utilisation among older long-term cancer survivors: A population-based study European Journal of Cancer; Floortje Mols,
et al.
Suffering in long-term cancer survivors: An evaluation of the PRISM-R2 in a population-based cohort Quality of Life Research; Vicky Lehmann
et al.
Increased health care utilization among long-term cancer survivors compared to the average Dutch population: A population-based study International Journal of Cancer; Floortje Mols,
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.