Data Archive | StudyUnits

Single Wave Study

General Information

Title

Life after the diagnosis of Hodgkin lymphoma 2004

Project Number

3.2

Longitudinal Type

Single Wave Study

Begin date

01-11-2004

End date

31-05-2005

Topics

Hodgkin lymphoma

Researcher

Floortje Mols, Lonneke van de Poll - Franse

Publisher

IKNL Profiles study

Funding Organization

Interzol clinical study group for Heamato-oncology
Foundation for the Promotion of Academic Training and Research in Health Care (SWOOG)
Beunke Fund for Lymphoma Research

Codebooks and other materials

View Documentation

Codebook in English

Codebook hl04a_EN_1.0.pdf

Variables

Variable name	Variable Label	Variable Type
hl04a01pat_id	Patient identifier	preloaded
hl04a01gend	Gender	preloaded
hl04a01timediag	Time passed since diagnosis	constructed
hl04a01lftcatageques	Age category at time of study	constructed
hl04a01lftcatincage	Age category at time of diagnosis	constructed
hl04a01stage	Stage of disease	preloaded
hl04a01grade	Grade of tumor	preloaded
hl04a01syst	Systemic therapy	preloaded
hl04a01surg	Surgical treatment	preloaded
hl04a01radioth	Radiotherapy	preloaded
hl04a01ther_oth	Other therapy	preloaded
hl04a01ther_no	No therapy	preloaded
hl04a01unknown	Treatment unknown	preloaded
hl04a01comb	Combination of treatments	constructed
hl04a01ses	SES value (Social Economic Status)	preloaded
hl04a01response	Response	derived
hl04a02q01	What is currently your marital status?	directly measured
hl04a02q02	Do you currently have a steady partner?	directly measured
hl04a02q03	Do you have children?	directly measured
hl04a02q04	Do you live in the same house with your child(ren)?	directly measured
hl04a02q05	Did cancer affect the relationship with your (former) partner?	directly measured
hl04a02q06	Indicate below which is your highest education level	directly measured
hl04a06q01	I have no job	directly measured
hl04a06q02	I am looking for a job	directly measured
hl04a06q03	I am a student	directly measured
hl04a06q04	I am a housewife/man	directly measured
hl04a06q05	I am disabled	directly measured
hl04a06q06	I am retired	directly measured
hl04a06q07	I work 1-16 hours a week	directly measured
hl04a06q08	I work 17-32 hours a week	directly measured
hl04a06q09	I work 33-40 hours a week	directly measured
hl04a06q10	I work more than 40 hours a week	directly measured
hl04a06q11	Nothing has changed	directly measured
hl04a06q12	I have been retrained due to cancer	directly measured
hl04a06q13	I have quit working due to cancer	directly measured
hl04a06q14	I am working more hours due to cancer	directly measured
hl04a06q15	I am working less hours due to cancer	directly measured
hl04a06q16	I am disabled due to cancer	directly measured
hl04a06q17	I have retired early	directly measured
hl04a06q18	I have been fired due to cancer	directly measured
hl04a06q19	Did you have trouble finding (additional) health insurance, because of cancer?	directly measured
hl04a06q20	Do you have experienced problems with getting life insurance, because of cancer?	directly measured
hl04a06q21	Did you have experienced problems with getting mortgage, because of cancer?	directly measured
hl04a05q01	How many times did you have contact with your general practitioner in the past 12 months?	directly measured
hl04a05q02	How many times did you have contact with your specialist in the past 12 months?	directly measured
hl04a05q03	How many of these contact moments had to do with cancer or the aftermath of cancer?	directly measured
hl04a05q04	Do you still have follow up appointments?	directly measured
hl04a05q05	What do you or did you, in general, think about the follow up appointments?	directly measured
hl04a05q06	Did you have a need for care after the treatment of your illness?	directly measured
hl04a05q07	Did you receive care after the treatment of your illness?	directly measured
hl04a05q08	Psychologist	directly measured
hl04a05q09	Sexologist	directly measured
hl04a05q10	Social worker	directly measured
hl04a05q11	Pastoral care	directly measured
hl04a05q12	General practitioner	directly measured
hl04a05q13	Dietist	directly measured
hl04a05q14	Physiotherapist	directly measured
hl04a05q15	Recovery program	directly measured
hl04a05q16	Creative therapy	directly measured
hl04a05q17	Oncological nurse	directly measured
hl04a05q18	Peer group	directly measured
hl04a05q19	How was the aftercare of your illness in general?	directly measured
hl04a05q20	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
hl04a32q01	Do you currently suffer much from your illness?	directly measured
hl04a07q01	Asthma, chronic bronchitis, COPD	directly measured
hl04a07q02	Heart condition	directly measured
hl04a07q03	High blood pressure	directly measured
hl04a07q04	Stroke	directly measured
hl04a07q05	Kidney disease	directly measured
hl04a07q06	Diabetes	directly measured
hl04a07q07	Malignancies	directly measured
hl04a07q08	Arthritis	directly measured
hl04a07q09	Skin condition	directly measured
hl04a07q10	Liver disease	directly measured
hl04a07q11	Thyroid disease	directly measured
hl04a07q12	Other condition	directly measured
hl04a07q13	I donâ€™t have any of these diseases / conditions	directly measured
hl04a07q14	Do you use medication for the disease(s) that you have indicated in the previous question?	directly measured
hl04a19q01	In general, would you say your health is	directly measured
hl04a19q02	Compared to one year ago, how would you rate your health in general now?	directly measured
hl04a19q03	Vigorous activities, such as running, lifting heavy objects, participating in	directly measured
hl04a19q04	Moderate activities, such as moving a table, pushing a vacuum cleaner, swimming	directly measured
hl04a19q05	Lifting or carrying groceries	directly measured
hl04a19q06	Climbing several flights of stairs	directly measured
hl04a19q07	Climbing one flight of stairs	directly measured
hl04a19q08	Bending, kneeling or stooping	directly measured
hl04a19q09	Walking more than a mile	directly measured
hl04a19q10	Walking several blocks	directly measured
hl04a19q11	Walking one block	directly measured
hl04a19q12	Bathing or dressing yourself	directly measured
hl04a19q13	Cut down on the amount of time you spent on work or other activites	directly measured
hl04a19q14	Accomplished less than you would like	directly measured
hl04a19q15	Were limited in the kind of work or other activities	directly measured
hl04a19q16	Had difficulty performing the work or other activities (for example, it took extra effort)	directly measured
hl04a19q17	Cut down the amount of time you spent on work or other activities	directly measured
hl04a19q18	Accomplished less than you would like	directly measured
hl04a19q19	Didnâ€™t do work or other activities as carefully as usual	directly measured
hl04a19q20	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
hl04a19q21	How much physical pain have you had during the past 4 weeks?	directly measured
hl04a19q22	During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)?	directly measured
hl04a19q23	Did you feel full of pep?	directly measured
hl04a19q24	Have you been a very nervous person?	directly measured
hl04a19q25	Have you felt so down in the dumps that nothing could cheer you up?	directly measured
hl04a19q26	Have you felt calm and peaceful?	directly measured
hl04a19q27	Did you have a lot of energy?	directly measured
hl04a19q28	Have you felt downhearted and blue?	directly measured
hl04a19q29	Did you feel worn out?	directly measured
hl04a19q30	Have you been a happy person?	directly measured
hl04a19q31	Did you feel tired?	directly measured
hl04a19q32	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
hl04a19q33	I seem to get sick a little easier than other people	directly measured
hl04a19q34	I am as healthy as anybody I know	directly measured
hl04a19q35	I expect my health to get worse	directly measured
hl04a19q36	My health is excellent	directly measured
hl04a19s01	Physical function scale	derived
hl04a19s02	Role functioning â€“ physical scale	derived
hl04a19s03	Role functioning â€“ emotional scale	derived
hl04a19s04	Vitality / Fatigue scale	derived
hl04a19s05	Mental health / well being scale	derived
hl04a19s06	Social functioning scale	derived
hl04a19s07	Bodily pain scale	derived
hl04a19s08	General health scale	derived
hl04a19s09	Mental component summary scale	derived
hl04a19s10	Physical component summary scale	derived
hl04a33q01	Problem: Fatigue	directly measured
hl04a33q02	Problem: Appetite changes	directly measured
hl04a33q03	Problem: Aches or pain	directly measured
hl04a33q04	Problem: Sleep changes	directly measured
hl04a33q05	Problem: Constipation	directly measured
hl04a33q06	Problem: Nausea	directly measured
hl04a33q07	Problem: Menstruation	directly measured
hl04a33q08	Problem: Neuropathy	directly measured
hl04a33q09	Rate your overall physical health	directly measured
hl04a33q10	How difficult is it for you to cope today as a result of your disease and treatment?	directly measured
hl04a33q11	How good is your quality of life?	directly measured
hl04a33q12	How much happiness do you feel?	directly measured
hl04a33q13	Do you feel like you are in control of things in your life?	directly measured
hl04a33q14	How satisfying is your life?	directly measured
hl04a33q15	How is your present ability to concentrate or to remember things?	directly measured
hl04a33q16	How useful do you feel?	directly measured
hl04a33q17	Has your illness or treatment caused changes in your appearance?	directly measured
hl04a33q18	Has your illness or treatment caused changes in your self concept (the way you see yourself)?	directly measured
hl04a33q19	Distressing: Initial diagnosis	directly measured
hl04a33q20	Distressing: Cancer treatments (i.e. chemotherapy, radiation, or surgery)	directly measured
hl04a33q21	Distressing: Time since my treatment was completed	directly measured
hl04a33q22	How much anxiety do you have?	directly measured
hl04a33q23	How much depression do you have?	directly measured
hl04a33q24	Fear: Future diagnostic tests	directly measured
hl04a33q25	Fear: A second cancer	directly measured
hl04a33q26	Fear: Recurrence or spreading (metastatis) of your cancer	directly measured
hl04a33q27	Fear: Dying	directly measured
hl04a33q28	How distressing has illness been for your family?	directly measured
hl04a33q29	Is the amount of support you receive from others sufficient to meet your needs?	directly measured
hl04a33q30	Is your continuing health care interfering with your personal relationships?	directly measured
hl04a33q31	Is your sexuality impacted by your illness?	directly measured
hl04a33q32	To what extent do you have worries about your fertility?	directly measured
hl04a33q33	To what degree has your illness and treatment interfered with your employment?	directly measured
hl04a33q34	To what degree has your illness and treatment interfered with your activities at home?	directly measured
hl04a33q35	How much isolation do you feel is caused by your illness or treatment?	directly measured
hl04a33q36	How much financial burden have you incurred as a result of your illness and treatment?	directly measured
hl04a33q37	To what extent do you have worries about family members getting cancer?	directly measured
hl04a33q38	How important to you is your participation in religious activities such as praying, going to church?	directly measured
hl04a33q39	How important to you are other spiritual activities such as meditation?	directly measured
hl04a33q40	How much has your spiritual life changed as a result of cancer diagnosis?	directly measured
hl04a33q41	How much uncertainty do you feel about your future?	directly measured
hl04a33q42	To what extent has your illness made positive changes in your life?	directly measured
hl04a33q43	Do you sense a purpose/mission for your life or a reason for being alive?	directly measured
hl04a33q44	How hopeful do you feel?	directly measured
hl04a33q45	To what extent have you been bothered by â€œsurvival guiltâ€? (that is, you felt guilty because you survived and others have not)	directly measured
hl04a33s01	Physical well-being scale	derived
hl04a33s02	Psychological well-being scale	derived
hl04a33s03	Social well-being scale	derived
hl04a33s04	Spiritual well-being scale	derived
hl04a33s05	Quality of life total score scale	derived
hl04a27q01	Do you use the internet?	directly measured
hl04a27q02	How often do you use the internet?	directly measured
hl04a27q03	Sending and receiving e-mail	directly measured
hl04a27q04	Searching for information	directly measured
hl04a27q05	Participating in chat groups	directly measured
hl04a27q06	Asking questions to experts	directly measured
hl04a27q07	Participating in user groups	directly measured
hl04a27q08	Do you use the internet with regard to information about cancer and the consequences of cancer?	directly measured
hl04a27q09	Your doctor	directly measured
hl04a27q10	An internet doctor	directly measured
hl04a27q11	Peers	directly measured
hl04a27q12	Members of a discussion group	directly measured
hl04a27q13	Cancer	directly measured
hl04a27q14	Possible treatments	directly measured
hl04a27q15	Possible alternative therapies	directly measured
hl04a27q16	Where to find a good doctor	directly measured
hl04a27q17	What the best hospital is	directly measured
hl04a27q18	What patient groups have to offer	directly measured
hl04a27q19	Which activities there are in the region for patients	directly measured
hl04a27q20	Which trials/studies there are	directly measured
hl04a27q21	Treatment guidelines	directly measured
hl04a27q22	Peer groups	directly measured
hl04a27q23	What you can do yourself	directly measured
hl04a27q24	Consequences for my partner	directly measured
hl04a27q25	Consequences for my children	directly measured
hl04a27q26	Cancer	directly measured
hl04a27q27	Possible treatments	directly measured
hl04a27q28	Possible alternative therapies	directly measured
hl04a27q29	Where to find a good doctor	directly measured
hl04a27q30	What the best hospital is	directly measured
hl04a27q31	What patient groups have to offer	directly measured
hl04a27q32	Which activities there are in the region for patients	directly measured
hl04a27q33	Which trials/studies there are	directly measured
hl04a27q34	Treatment guidelines	directly measured
hl04a27q35	Peer groups	directly measured
hl04a27q36	What you can do yourself	directly measured
hl04a27q37	Consequences for my partner	directly measured
hl04a27q38	Consequences for my children	directly measured
hl04a34q01	Size of the chosen sticker	directly measured
hl04a34s01	Distance in millimeters from the center of the sticker to the center of the yellow circle	derived

Questions

Questionnaire: Quality of life Hodgkin lymphoma

The questionnaire was originally conducted in Dutch.

Browse Quality of life Hodgkin lymphoma

Response Information

Response Overview

The questionnaire was submitted to 164 patients of 18 years and older. 132 patients completed the questionnaire (reponse rate 80%).

Collection Events

Period

01-11-2004 to 31-05-2005

Sample

Patients diagnosed with 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 the respondents.

Publications

Better quality of life among 10–15 year survivors of Hodgkin’s lymphoma compared to 5–9 year 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.

Dissertation: Physical and psychological well-being among long-term cancer survivors ; F. Mols