Cancer Research UK. Cancer Awareness Measure (CAM) Coding sheet
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1 UK Data Archive Study Number National Awareness and Early Diagnosis Initiative: Cancer Awareness Measures, Humber and Yorkshire Coast Cancer Network, 2010: Special Licence Access Cancer Research UK Cancer Awareness Measure (CAM) Coding sheet (for use with SPSS or EXCEL) This survey instrument (CAM) was developed by Cancer Research UK, University College London, Kings College London, and University of Oxford in
2 Below is a format for recording the data of the CAM so that it is suitable for depositing in the data archive. We are currently making arrangements to deposit the data at the UK Data Archive and will provide instructions on how to do this at a later date. You can see that as well as numbers for coding the data, we are also providing a set of correct variable names (e.g. LumpC). Please use these variable names when recording your data. For every question it is possible to code data as refused. Use this code when the participant actively chooses not to respond. Where appropriate there is a code for don t know, please see relevant questions below. For all other missing data just leave a blank. Please store the data in either EXCEL or SPSS for transfer to the archive. There is a template EXCEL and SPSS data file available, if you require it. We have not provided guidance about how the CAM should be scored, but we are happy to give advice and can provide syntax files for coding in SPSS. Contact details: Dr Alice Simon: [email protected]
3 There are many warning signs and symptoms of cancer. Please name as many as you can think of: Variable names: SymptomO1 to SymptomO18 Please create 18 variables labelled 1, 2, 3 etc up to 18. Each symptom must be recorded as a new variable using the coding frame below. For example if the first response is weight loss code as 9 in SymptomO1. If the second response is bleeding code as 3 in SymptomO2 etc To code a variable that is not on the list code as Other (code 17) and write the variable verbatim in: SymptomO17 or SymptomO18. This can be done for 2 other variables. Warning sign Code Lump/swelling 1 Pain 2 Bleeding 3 Cough/hoarseness 4 Change in bowel/bladder habits 5 Difficulty swallowing Change in appearance of a mole 7 Sore that does not heal 8 Weight loss 9 Tiredness/fatigue 10 Nausea/sickness 11 Generally unwell Bruising 13 Loss of appetite 14 Blurred vision 15 Feeling weak 1 Other 17 Nothing 18 Refusal 98 Don t know 99 The following may or may not be warning signs for cancer. We are interested in your opinion:
4 Question followed by corresponding SPSS/Excel Variable Name Do you think an unexplained lump or swelling could be a sign of cancer? LumpC Do you think persistent unexplained pain could be a sign of cancer? PainC Do you think unexplained bleeding could be a sign of cancer? BleedingC Do you think a persistent cough or hoarseness could be a sign of cancer? CoughC Do you think a persistent change in bowel or bladder habits could be a sign of cancer? BowelC Do you think persistent difficulty swallowing could be a sign of cancer? SwallowingC Do you think a change in the appearance of a mole could be a sign of cancer? MoleC Do you think a sore that does not heal could be a sign of cancer? SoreC Do you think unexplained weight loss could be a sign of cancer? WeightC Scoring Yes No Don t know If you noticed an unexplained lump or swelling how soon would you contact your doctor to make an appointment to discuss it? Variable name: LumpTime 1-3 days 4- days 1 week 2 weeks 1 month weeks
5 If you had unexplained pain how soon would you contact your doctor to make an appointment to discuss it? Variable name: PainTime 1-3 days 4- days 1 week 2 weeks 1 month weeks If you had unexplained bleeding how soon would you contact your doctor to make an appointment to discuss it? Variable name: BleedingTime 1-3 days 4- days 1 week 2 weeks 1 month weeks If you had a cough or hoarseness how soon would you contact your doctor to make an appointment to discuss it? Variable name: CoughTime 1-3 days 4- days 1 week 2 weeks 1 month weeks If you noticed a change in bowel or bladder habits how soon would you contact your doctor to make an appointment to discuss it? Variable name: BowelTime 1-3 days 4- days 1 week 2 weeks 1 month weeks If you had difficulty swallowing how soon would you contact your doctor to make an appointment to discuss it? Variable name: SwallowingTime 1-3 days 4- days 1 week 2 weeks 1 month weeks
6 If you noticed a change in the appearance of a mole how soon would you contact your doctor to make an appointment to discuss it? Variable name: MoleTime 1-3 days 4- days 1 week 2 weeks 1 month weeks If you had a sore that did not heal how soon would you contact your doctor to make an appointment to discuss it? Variable name: SoreTime 1-3 days 4- days 1 week 2 weeks 1 month weeks If you had unexplained weight loss how soon would you contact your doctor to make an appointment to discuss it? Variable name: WeightTime 1-3 days 4- days 1 week 2 weeks 1 month weeks If you had a symptom that you thought might be a sign of cancer how soon would you contact your doctor to make an appointment to discuss it? Variable name: CancerSignTime 1-3 days 4- days 1 week 2 weeks 1 month weeks Sometimes people put off going to see the doctor, even when they have a symptom that they think might be serious. These are some of the reasons people give for delaying. Could you say if any of these might put you off going to the doctor? Scoring Question followed by SPSS/Excel variable name Yes often Yes sometimes No Don t know I would be too embarrassed 4
7 Embarrassed I would be too scared Scared I would be worried about wasting the doctor s time WorryTime My doctor would be difficult to talk to DifficultTalk It would be difficult to make an appointment with my doctor Appointment I would be too busy to make time to go to the doctor Busy I have too many other things to worry about WorryMany It would be difficult for me to arrange transport to the doctor s surgery Transport I would be worried about what the doctor might find WorryFind Scoring Question followed by SPSS/Excel variable name Yes often Yes sometimes No Don t know I wouldn t feel confident talking about my symptom with the doctor Confident Other (please specify) Other 4 Type in verbatim
8 What things do you think affect a person s chance of getting cancer? Variable names: RiskO1 to RiskO2 Please create 2 variables labelled 1, 2, 3 etc, up to 2. Each risk factor must be recorded as a new variable using the coding frame below. For example if the first response is being overweight code as in RiskO1. If the second response is pollution code as 22 in RiskO2 etc. To code a variable that is not on the list code as Other (code 25) and write the variable verbatim in: RiskO25 or RiskO2. This can be done for 2 other variables. Risk Factor Code Smoking 1 Exposure to another person s cigarette smoke (passive smoking) Drinking alcohol 3 Not eating enough fruit and vegetables Eating red or processed meat 5 Being overweight Getting sunburnt/exposure to the sun 7 Older age 8 Family history/having a close relative with cancer/hereditary Infection with HPV (human papillomavirus) Not doing enough exercise/physical activity Diet (unspecified) A high fat diet 13 A low fibre diet 14 Food additives 15 Being underweight 1 Genes/genetics 17 Infection with viruses (Unspecified/Other) Having many sexual partners 19 Taking HRT/the (contraceptive) pill 20 Living near power lines 21 Pollution 22 Risk Factor Code Radiation 23
9 Stress 24 Other 25 Nothing 2 Refusal 98 Don t know 99
10 Medical scientists suggest that these are some of the things that can increase the chance of getting cancer. How much do you agree that each of these can increase the chance of getting cancer? Question followed by SPSS/Excel variable name Strongly disagree Disagree Not sure Agree Strongly agree Smoking any cigarettes at all SmokingC Exposure to another person s cigarette smoke PassiveC Drinking more than 1 unit of alcohol a day AlcoholC Eating less than 5 portions of fruit and vegetables a day FruitC Eating red or processed meat once a day or more MeatC Being overweight (BMI over 25) OverweightC Getting sunburnt more than once as a child SunburnC Being over 70 years old OlderC Having a close relative with cancer FamilyC Infection with HPV (Human Papillomavirus) HPVC Doing less than 30 mins of moderate physical activity 5 times a week ExerciseC
11 Here is a picture of 100 people. Out of 100 people, how many do you think will develop cancer at some point in their life? people out of 100 will develop cancer at some point in their life Record the actual number (0-100) that the respondent gave as the answer in the variable name: Incidence
12 Below are the variable names used in Q9, please turn to the next page for the appropriate coding frame that accompanies these variable names. What do you think is the most common cancer in women? Variable name: Cancer1F NB To code a variable that is not on the list, code as Other (code 19 ) and then write the variable verbatim in: Cancer1otherF or in the appropriate other variable field. Further explanation on next page. (Cancer1otherF) What do you think is the second most common cancer in women? Variable name: Cancer2F (Cancer2otherF) What do you think is the third most common cancer in women? Variable name Cancer3F (Cancer3otherF) What do you think is the most common cancer in men? Variable name: Cancer1M (Cancer1otherM) What do you think is the second most common cancer in men? Variable name: Cancer2M (Cancer2otherM) What do you think is the third most common cancer in men? Variable name: Cancer3M (Cancer3otherM) CODING FRAME ON NEXT PAGE
13 Data archive: Please use the coding frame for men and women below for transfer to the data archive. Example: If the response for the most common cancer in women is lung cancer place code 9 under variable name Cancer1F. Code a response that is not on the list code as Other (code 25 ) and write the variable verbatim in: Cancer1otherF or in the appropriate other variable field. Cancer type Code Bladder 1 Bowel/colorectal/rectal 2 Brain 3 Breast 4 Cervical/cervix 5 Kidney Leukaemia 7 Liver 8 Lung 9 Lymphoma 10 Melanoma 11 Mesothelioma (protective lining of the lung, stomach, heart) Multiple myeloma 13 Non-Hodgkin s lymphoma 14 Oesophagus/gullet/food pipe 15 Oral/mouth/oropharynx/lips/tongue 1 Ovarian 17 Pancreatic 18 Prostate 19 Skin 20 Stomach 21 Testicular 22 Throat 23 Uterus/endometrial/womb 24 Other 25 Refusal 98 Don t know 99
14 Is there an NHS breast cancer screening programme? Variable name: BreastScreening Yes No Don t know If yes, at what age are women first invited for breast cancer screening? For the age component of this question, please record the actual age the respondent gave as the answer in the variable name. Variable name: BreastAge Age in years Refused Don t know Is there an NHS cervical cancer screening programme (smear tests)? Variable name: CervicalScreening Yes No Don t know If yes, at what age are women first invited for cervical cancer screening? For the age component of this question, please record the actual age the respondent gave as the answer in the variable name Variable name: CervicalAge Age in years Refused Don t know Is there an NHS bowel cancer screening programme? Variable name: BowelScreening Yes No Don t know If yes, at what age are people first invited for bowel cancer screening? For the age component of this question, please record the actual age the respondent gave as the answer in the variable name Variable name BowelAge Age in years Refused Don t know
15 Please put the following things in order of how much you think they contribute to cancer in the UK: Lifestyle (e.g. smoking, diet, physical activity) Chance Aging Environmental factors (e.g. pollution, radiation) Genetic inheritance (e.g. runs in the family) 1. (Most important) (Least important) Data archive: Please use the following coding frame for transfer to the data archive Contributing factor Corresponding variable name in EXCEL/SPSS data file Code Most Second Third Fourth Least 11i. Lifestyle Lifestyle 11ii. Chance Chance 11iii. Aging Aging 11iv. Environment 11v. Genetic inheritance Environment Genetic Demographic Questions Coding 1. What is your age? Variable name: Age
16 2. What is your gender? Variable name: Gender Male Female Which of these best describes your ethnic group? Variable name: EthnicGroup To code an ethnic group that is not on the list code as Other (code 1) and write the variable verbatim in: OtherEthnic White Mixed Asian or Asian British White British White Irish Any other White backgroun d 1 White and Black Caribbean 2 White and Black African 3 White and Asian Any other Mixed background Black or Black British 4 Indian 8 Black Caribbean 5 Pakistani 9 Black African Bangladesh i 7 Any other Asian background 10 Any other Black background 11 Chinese/othe r Chinese Other What is your marital status? Variable name: MaritalStatus Single/never married Married/living with partner Married separated from spouse Divorced Widowed Civil partnership 5. What is the highest level of education qualification you have obtained? Variable name: HighestEducation To code an ethnic group that is not on the list code as Other (code 7) and write the variable verbatim in: OtherEducation
17 1 Degree or higher degree 5 O Level or GCSE equivalent (Grade A - C) 2 Higher education qualification below degree level O Level or GCSE (Grade D - G) 3 A-levels or highers 7 Other. 4 ONC/BTEC 8 No formal qualifications. Please tick the box which best describes your living arrangement: Own outright Own mortgage Rent from Local Authority/Housing Association Rent privately Squatting Other (e.g. living with family/friends) 7. What is your Postcode? Variable name: Postcode Please record the respondents postcode by writing it in the variable field labelled Postcode 8. Are you currently: Variable name: Employed 1 Employed full-time 5 Full-time homemaker 2 Employed part-time Retired 3 Unemployed 7 Student 4 Self-employed 8 Disabled or too ill to work 9. Does your household own a car or van? Variable name: Car No Yes, one Yes, more than one Have you, your family or close friends had cancer? (please tick all that apply) You CancerYou Yes 1 No 2 Close Friend CancerCloseFriend Partner CancerPartner Yes 1 No 2 Other Friend CancerOtherFriend Yes 1 No 2 Yes 1 No 2
18 Close family member CancerCloseFamily Other family member CancerOtherFamily Yes 1 No 2 Not sure CancerNotSure Yes 1 No 2 Do not wish to answer CancerRefusal How many years have you been living in the UK? Variable name: YearsUK. What is the main language spoken at home? Variable name: Language To code an ethnic group that is not on the list code as Other (code 7) and write the variable verbatim in: OtherLanguage 1 English 5 Sylheti 2 Urdu Cantonese 3 Punjabi 7 Other.. 4 Gujarati
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